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Dementia Action Week (not such a bad idea after all)

Like the best-selling author Wendy Mitchell, I’m not a great believer in awareness weeks, whatever they’re for.  Those with dementia live it every minute of every day of every week of every month of every year, not one week of the year.  Yes, focussed weeks provide a platform, a reason to write and talk about a topic, but I’d rather use my words for something more concrete, not a nebulous concept.

However, this week I’ve been given pause for thought because so many pieces on dementia (many of them a direct result of Dementia Action Week or #DAW) have caught my attention.

First up was an item on Radio 4’s Today programme (42mins in) which reported that for the first time ever a person with dementia had given live evidence to Parliament’s Select Committee on Health and Social Care.  A red letter day indeed.

John O’Doherty has vascular dementia.  During a session held to consider how best those with dementia and their carers should be supported, he told the cross-party committee that he had gone from a job in the finance department of his local authority, responsible for hundreds of thousands of pounds, to being unable to pick out the right money to pay for his shopping.

“It got to the stage where I’d changed from the person to go to, to the person to avoid,” said John.

Jonathan Freeman, whose mother had dementia, described years of bureaucracy and delay as the authorities refused to help with the soaring costs of her care.  Even after an assessor agreed that she qualified for help with care costs, a review panel – who had never met Jonathan’s mum and hadn’t participated in the assessment – decided that she didn’t qualify.

Paul Bristow MP wondered if the system was geared not towards granting Mr Freeman’s mother the support she needed but towards finding reasons not to give that support.   Mr Freeman agreed.

“It was very, very clear to me that any possible excuse not to provide mum with the financial support that was her right, was used,” he said.

Hearing his words brought back the anger, frustration and grief I’d experienced as I battled for years to gain support for both my mum, with her dementia, and my dad whose strokes left him needing two live-in carers.  I wrote about my travails in the national press and on Radio 4 I said I agreed with Andrew Dilnot’s proposals for a cap on the maximum amount that an individual is forced to pay for his or her care to avoid the unlucky few (such as my mum and dad) facing catastrophic costs of over £100,000.

That was in 2011.  Ten years on and nothing much has changed.  Which is a scandal.

But some things have changed in the last decade, not least those with dementia being asked to give live evidence to a parliamentary committee.

The number of excellent, often award-winning films and plays centred around dementia, and tv shows with dementia plotlines, has risen swiftly.  This is the soft power of culture at work, not only raising awareness but educating people and busting some of the myths that linger around this misunderstood and feared condition.

On Thursday my neighbour’s 21-year-old daughter came to talk to me about her post-graduate radio assignment.  Her chosen topic, dementia: not least because it was Dementia Action Week.  So there’s a quick win.  We chatted for almost an hour and her knowledge of the condition and empathy towards those unlucky enough to live with it were very impressive.

Wendy Mitchell

Finally, I can’t let the week pass without a mention of one of my favourite people.  Wendy Mitchell’s powerful blog, Which Me Am I Today, never fails to wow me.  Her views are as incisive as only those of someone with dementia can be – and her witty writing is superlative.

She kicked off on Monday with a blog entitled, “We believed we could … and we did!”  Which just about sums up her own take on life.  In it she describes how the community interest company Innovations in Dementia was awarded National Lottery funds to set up Dementia Enquirers, a new approach to research that is led and controlled by people living with dementia.

Dementia Enquirers by Tony Husband

The cartoonist Tony Husband (a fantastic – and fantastically talented – man with the unique distinction of appearing on my Well I Know Now podcast twice) came up with an image for the Enquirers. Which, as Wendy says, illustrates  that “leading” the research doesn’t necessarily mean being behind the wheel.

As Wendy explains in her blog:

“Every component of a car helps you get from A to B. Someone may be the headlights, coming up with the direction, the ideas we take, others the wheels making sure it happens, down to the nuts and bolts holding it all together – every component vital.

“Even the professional lead researchers delegate work to be done by others and we were no different.

“The difference in our research was that WE chose the subjects that WE thought were important.  WE decided how to go about it.  WE invited others through our door to support and help”.

How totally brilliant. And (I believe, though correct me if I’m wrong) how very different from a decade ago.

Here are some of the projects that the Enquirers … well … enquired into: Thred, Liverpool considered how urban and rural transport systems could people diagnosed with dementia live independently for longer; Minds and Voices, York looked into the pros, cons and particular needs of those living alone with dementia, and those living with a care partner; the Beth Johnson Foundation, Stoke on Trent delved into whether class, ethnicity or intellect affected the dementia pathway.  There were many more.

Despite the challenges thrown down by Covid, the Enquirers met via Zoom to launch the findings of their two years of hard work.  Wendy, in ways that are far beyond me, managed to embed into her blog the interactive scrolling report of her own Minds and Voices group in York.  I can only look on in awe at the achievements of Wendy and her peers.

Wendy – being Wendy – blogged every day of #DAW and Thursday’s was another example of how things have changed for the better in the last few years.  She related a visit from Laura Williams, Dementia Project Coordinator at Yorkshire Ambulance Service NHS Trust, who had earlier spoken to the Minds and Voices group to find out about them and see how the ambulance service could help people with dementia.

The pair of them were filmed as Laura asked Wendy pre-prepared questions such as: what were the early signs that led to your diagnosis, why is it so important to see the person not the dementia, what do Yorkshire Ambulance need to be mindful of when treating a person living with dementia, why are carers are so important, and what it is like to live with dementia.   And, as ever when Wendy’s involved, there is a lovely, smiley picture of them both to illustrate the piece.

So, having headed into Dementia Action Week with my usual scepticism, I’ve ended it more hopeful and upbeat about life.  Which, I have to say, is very often how my dementia work – whether  blogging, speaking or podcasting – affects me.   Which must say something very special about the people I meet.

Laura Williams & Wendy Mitchell

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My Life Films

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

Jorg Roth is the founder of My Life Films, a charity that makes professional quality, bespoke autobiographical films of people with dementia, for no charge to them or their families.   The films are skilfully edited, divided into short chapters depicting important periods of the individual’s life, so that he or she doesn’t have to concentrate for too long, and set to a soundtrack of their favourite music.

Roth came to dementia not as a carer or medic, or a professional from the social care world, but as a successful film maker with a wealth of experience. He’s a creative with a commercial approach to dementia.  But don’t switch off at the sound of what he himself calls the “C word”.

Commercialism, he says , can be good.  He knows that if people with dementia don’t rate, like and use his product, it won’t fly.  For him, the user experience is king.   And the users of his product, his customers and consumers, are those living with the condition.  As they might put it:  nothing about us without us.

The making of the film, the collecting of old photographs, memories and stories of its subject, is as rewarding as the highly watchable result.  Since the charity was set up seven years ago it’s produced 300 films that have benefitted hundreds of individuals, families and carers.  For, as well as the longer film, the feature-length event as it were, My Life Films also produces a short five minute, narrated version of the person’s life for formal carers so that they can get to know and really understand who it is they’re caring for.

The finished film is premiered in the presence of its star and their family and friends.  The impact on all involved is extraordinary and very moving.  Some of you may remember my podcast with Mike Parish whose partner of 45 years, Tom Hughes, has dementia.  Mike commissioned a My Life Film for Tom and says that every time Tom watches it he’s transfixed.

“The personalised music captures his attention in a way that TV burbling in the background wouldn’t,” says Mike.  “And it’s a treasure forever.”

A My Life Film bring families together, gives friends an understanding of dementia they might never have had, and is now impressing the medical profession.  A recent study at St George’s NHS Mental Health Trust in London concluded that My Life Films can lessen the behavioural and psychological symptoms of those with dementia and improve their quality of life, as well as enhancing relationships between carers and those they care for and reducing medication.  Another evaluation by Hampshire County Council revealed the same beneficial consequences.

More recently, during lockdown, Jorg and his team have set up My Life TV, aka Netflix for people with dementia, with on-demand programmes as varied as specially designed quizzes, singalongs, chair yoga, nature programmes, archive news and shows.   Individuals and care homes can sign up for monthly subscriptions.  The modest fees help finance the My Life Films.

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The Three Musketeers

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

For my series finale I have not one, not two, but THREE guests – I see them as dementia’s answer to the three musketeers. 

They are the Bard of Barnsley aka Ian McMillan, a man with so many titles it’s difficult to know which to choose, but I’ll plump for poet, comic & broadcaster;  internationally acclaimed photographer Ian Beesley; and last but by no means least, one of the UK’s most prolific & best-loved cartoonists, not to mention previous Well I Know Now guest, Tony Husband. 

They are all highly creative, very successful & on a mission to help those with dementia lead happier, easier, more fulfilled lives. Their latest collaboration is a colourful one with a powerful past that stretches back to the 18th century when trades unions were illegal and women’s votes were a long way off. 

They joined me to chat about the The Unfurlings.  A series of richly & traditionally embellished banners which they created with people living with dementia to illustrate the best – & worst – aspects of how we as a country and a society treat those with the condition. 

Brought together in 2018 through a series of what sound like fairly riotous workshops in Exeter, the trio – along with people with dementia – compiled comments, poems, cartoons & photographs to help the public better understand what it’s really like to live with the condition.  

And in that same year, the first banner was created with Yorkshire dementia & empowerment project, or DEEP, who were campaigning for those living with dementia to be better served by public transport.  The Right to a Grand Day Out, as it’s called with a nod to Wallace & Gromit, was unfurled in the middle of the rush hour at York station, with Ian McMillan reading his poems.  Which is altogether a wonderful image.

Many more banners followed – from the Young Dementia Leeds Cottingley Crew marching forward together against dementia to the Budding Friends Allotment Project in Exeter digging for memory & growing stories, the Hamari Yaadeen South Asian dementia café in Leeds & Bradford’s Face It Together group who work with local businesses to make facilities such as cash machines more accessible.

What links them all is colour, humour, understanding, warmth, local knowledge & a sense of shared history.  Banners traditionally represented hope for the future, they showed what ordinary people could achieve when they united in a common cause. 

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Lenny the Dementia Friendly Barber

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

Lenny White, the world’s first dementia-friendly barber, lives in Northern Ireland where, at the time of recording, the date for the reopening of salons and spas had yet to be announced but it will surely be very soon. Before the pandemic hit, Lenny took his skills – and all the trappings of his cut-throat profession – around the UK and as far afield as America and Canada, setting up shop in two care homes in New York and cutting, pampering and wet shaving Auschwitz survivors in Montreal.

Lenny’s customers are all special. All live with disabilities or are vulnerable in some way, and he concentrates his considerable energies and passion on those with dementia. It seems a strange occupation for a man who worked in sales for 20 years. But from a young age Lenny has always enjoyed getting to know people; he was just 17 when he first worked in a care home as a kitchen porter.  Even then he liked to wander into the wards and strike up conversations.

So when, in 2015 he found himself re-evaluating his life after a divorce, he decided to return to the care sector, first as a carer and then as a care home barber. He’d realised that there wasn’t enough to occupy men living there; while many homes boasted women’s hairdressing salons, complete with soft, feminine (usually pink) touches, few if any had barbers.

Lenny completed a barber’s course while still working part-time in sales and started working in Kingsland Nursing Home in Bangor, as both a carer and barber. When he posted some of his pictures and stories online they caught the attention of the Alzheimer’s Society, who suggested that he attend a dementia-friendly course. He duly did, thus officially becoming Lenny the Dementia-Friendly Barber and utilising to great effect his twin skills of caring and grooming – there’s a particular way to cut the hair of people confined to beds and wheelchairs.

Before Covid locked us all down Lenny was visiting well over 50 care homes, as well as hospitals and day care centres, returning every six weeks with his mobile salon, setting up his candy-striped pole, his juke box full of Frank Sinatra and Dean Martin, his old-fashioned posters and paraphernalia, scenting the air with a spritz of cologne and Old Spice aftershave and treating his all-male customers to the full barbering experience.

“Men love getting together with other men and having a bit of a banter”, says Lenny. “Just because someone has dementia it doesn’t mean they have to lose out on things like this, in a sensory environment”.

Lenny’s learnt a lot from people living with dementia, explaining that he meets them, “where they’re at”, slowing himself down and becoming more patient. And he regards it as a privilege to get to know the individuals and their families, sometimes giving head massages and haircuts to men nearing the very end of their lives.

In 2017 Lenny’s inspirational, pioneering work was recognised by the Northern Ireland Alzheimer’s Society when he was honoured for his outstanding contribution at the Dementia Friendly Awards.

For Lenny though, the rewards and support definitely work both ways. “These men are waiting for me and I love looking after them,” he says. “But I don’t think they realise how much they are looking after me; they definitely help me – I’ve found a purpose in looking after them. I just treat them as a friend. Dementia doesn’t even come into it; I just see them for who they are”.


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Rosanne’s Story

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

Rosanne Corcoran is a carer – or to use her American word, a caregiver.  She is also a daughter, wife, mother and podcaster.  This week she spoke to me from her home in Philadelphia, USA .   Her dad died when she was 16 and she’s very close to her 92-year-old mum. 

For the past 12 years, since her mum was diagnosed with, first mild cognitive impairment and then Alzheimer’s, Rosanne has been her main carer, and in 2015 her mum moved in with her and her family.  Before she had to give it up, her career was in real estate. 

To put it bluntly, in her own words, she is a full-time, sandwich-generation dementia caregiver and she’s exhausted.    And that was before Covid struck;   before she lost the caregiver who came in for four hours a day so she could run errands;  before her younger daughter’s high school closed. 

For months now Rosanne has barely left the house; when she does she hurries home for fear of bringing the virus back with her.  She doesn’t think her mum Rose, who needs help with all her everyday needs, would survive were she to catch it.

Last November, Rosanne wrote an open letter “To Dementia” for Next Avenue, an influential US website on ageing.  In it she describes how the disease has taken a beautiful, independent, light of a woman and turned her into someone whose world has been shrunken to one room.   

“I am consumed with worry and fear and guilt and sadness and anger over watching my mother slip away, all the while trying to stay involved in my children’s lives,” she writes. 

Yet Rosanne still manages to be upbeat.  “At least my children learn about what’s important in life; at least my mother knows she is loved; at least we have dinner together; at least we can laugh”. 

Like me, she’s found a creative outlet in writing and podcasting.  Each month she writes, records, edits and produces Daughterhood the Podcast on the Whole Care Network: where her guests have ranged from Teepa Snow, one of the world’s leading educators on dementia care to our own Tommy Dunne, a Liverpudlian who was diagnosed with Alzheimer’s at the age of 58.

Speaking to Rosanne about her roles as carer, mother and podcast host was a delight.   She’s warm, honest, knowledgeable and – despite her mum’s sleep patterns ensuring she rarely gets to bed before the sun comes up (the day we spoke it was 3.15am) – fluent and charming.   But why take my word for it?  Tune in to any of the podcast platforms above to hear her fabulous mid-Atlantic voice.   

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Homely Homes for Life

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

George Coxon is the owner and director of two small care homes in Devon. Pottles Court, which has to have the best care home name EVER, and Summercourt, both of which live by the philosophy of homely homes for life. 

When George and I talked he told me, in no uncertain terms, that people who come to live in Pottles Court and Summercourt do just that: they arrive and move in. They’re not admitted, a word more suited to hospitals. How very refreshing.

In fact George Coxon seems altogether refreshing. For a start he’s unusual in the care sector in that he came to it from the NHS; if people do make the transfer, it’s normally the other way round. He trained first as a mental health nurse and then as a specialist community psychiatric nurse before buying his first care home in 2005 while continuing to work in the NHS until 2012. Now he’s making it his business to help bring about integration of the two services through his roles on various trusts, boards and networks.

In a Ted talk a couple of years ago George asked his audience to think of words which, for them, conjured up the single most important element of care home life. Top of George’s own list was the word Kind. Closely followed by Keen, Safe, Fun, Curiosity and Fresh, from fresh ideas to that inviting, fresh scent that we’d all like to greet us when we visit our mum in a care home, and so often doesn’t.

To hear the list of words that inform George’s attitude to care homes is to understand the man. For him, guarding his residents’ fun is as important as guarding their safety. The final word on his list is Time. Too often, says George, there’s a polarity between busy care home staff and bored residents.

The pandemic has been nothing short of a catastrophe for so many care homes. For Pottles Court and Summercourt, where personal care is just one small part of everyone’s lives and the emphasis is on fun, it was a huge blow. George told me the crucial factors for people living in his care homes are: having things to look forward to, having time to reflect on the past, receiving and giving affection, and feeling useful. During the Covid crisis they were denied them all.

“People were bunkered,” George says. “It felt punitive. We normally have a calm, easy-going atmosphere and in many ways when life was limited for safety reasons, that caused more harm”.

He admits that last year was challenging in terms of communication and documentation, and says the key to meeting those challenges is good teamwork.

“Care homes,” he says, “touch every base. I can unquestionably say with absolute sincerity that work in progressive, energised care homes provides a special kind of buzz and thrill to those associated with them. There is nothing like the satisfaction you get from life in a great care home – as a resident, a worker or an owner”.


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You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

Dadland, the 2016 Costa book prize winner, was described by one of the judges as the most unconventional biography she had ever read.  And it is.  It is also extraordinarily beautiful, moving, funny and haunting.  

It tells the story of Lieutenant Colonel Tom Carew, a dashing maverick and daredevil hero of the second world war who was awarded both the Distinguished Service Medal and the Croix de Guerre.  In 1943 he joined Churchill’s Special Operations Executive, becoming an undercover guerrilla agent in first France and later Burma.

As well as being a natural rebel made for this role, the three-times married Carew is father to four.  He’s an exciting – if challenging – dad.  Who wouldn’t want to boast to their schoolfriends that their Secret Service dad had been described in the Times of India as Lawrence of Burma? 

It wasn’t until his final years that Carew’s daughter found, up in his attic, a haul of yellowing letters, diaries and papers.  Through them she painstakingly pieces together the details of his remarkable life.  The heart-breaking twist is that even as she’s discovering her dad, he’s succumbing to dementia.  He’s leaving her. 

Keggie Carew

She is Keggie Carew.   And in this week’s podcast she talks to me about her dad and his dementia, about the twists and turns of family life, about forgiveness and about that strange, intangible thing called love.  All themes that are skilfully woven into Dadland as its mesmerising narrative flits about in time. 

“We sit together in the garden and watch the sun set across the pasture,” she writes of her and her father.  “Insects rise, the day’s last rays snagging their gossamer wings .. He is completely immersed in it.  I watch him watching. He is far away.  We sit together, floating in and out of each other’s consciousness .. His world is fading.  Coming and going in front of his own eyes; each name hazy, each face a blur of memory.  Every house he lived in, every girl he loved, slip-sliding away.  Night is beginning to surround him.  He stands helplessly, ears ringing with noises he cannot understand, words that don’t make sentences, sounds that don’t make words, faces that are completely new to him, places that he knew so well until yesterday.  The hourglass has slowed and quickened simultaneously.  And yet.  The idea of one day him not being in the world seems an impossibility”. 

Keggie’s powerful debut work is imbued with the sadness of losing such a man and of him losing himself.  How could someone so fearless and dazzling have come to this is its constant underlying refrain.  It’s an exploration not only of Tom Carew, but of how we all change and develop through life, yet remain fundamentally the same, and about how our parents’ ways – their talents and flaws – flow inexorably into us no matter how hard we push back. 

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A Footballing Legend

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

In this week’s episode John Stiles talks to me about his father, who died of dementia, aged 78.   Nobby Stiles was a legend.  It’s an overused phrase.  But he was.  I know nothing about the sport he played – he was a footballing great – but even I know his name.  Anyone over a certain age can’t fail to.

My mum adored him. She didn’t watch much football either.  But she loved the cheeky chappy with his famous gap-toothed grin who, having played every minute of England’s victorious 1966 World Cup, celebrated his team’s 4-2 win over Germany by dancing a jig on the Wembley pitch with the trophy in one hand and his false teeth in the other. 

Norbert Peter Stiles was born in Collyhurst a working class suburb of Manchester.  The son of an undertaker and a machinist, he followed Manchester United, played for England Schoolboys at the age of 15 and, in 1959, fulfilled his childhood dream and joined his beloved team as an apprentice. 

The midfielder earnt his first team debut a year later and was an energetic tackler, feeding his forward line of Bobby Charlton, George Best and Denis Law, helping them win the First Division title and catching the eye of England manager Alf Ramsey. 

Stiles debuted for his country against Scotland at Wembley in April 1965.  But his aggressive ball-winning technique didn’t please everyone.  “I got slaughtered in the papers, absolutely slaughtered,” Nobby said, but he never let the criticism put him off. 

And nor did the England manager, who threatened to resign when the sports governing body demanded that he drop Stiles for the 1966 World Cup quarter-final against Argentina following a robust challenge in the final group game against France.  Ramsey would later say that he had five world-class players and Nobby, a great reader of the game, was one of them. 

A national star then, but also a hero in his home city of Manchester.  Stiles made almost 400 appearances for the Red Devils, helping them win two league titles as well as the European Cup in 1968.  

His later managerial career never equalled his success on the field – John says his  dad was too nice to be a manager – and he had some low times.

Others though, saw his strengths.  United invited him to be team coach and in the early ‘90s he nurtured the likes of Ryan Giggs, Gary Neville and David Beckham from the academy to the first team.  

But in 2002 Nobby suffered a heart attack and a year later, aged 61, he began to show signs of what was later to be diagnosed as a mixture of vascular and Alzheimer’s dementia.  As his health worsened so too did his finances and he was forced to sell his World Cup winner’s medal and other memorabilia.  At one point his bank card was declined at a cashpoint for insufficient funds. It seems almost unbelievable that it should come to this for such a sporting great. 

Following Nobby’s death in 2020 the Stiles’ family are speaking publicly about dementia’s terrible toll on not just an individual but a family – and about the unfairness of a system that sees those with other diseases being given free NHS care while those with dementia have to pay.

Having long suspected that Nobby’s dementia was caused by the innumerable headings he made during his career, the family made the brave decision to donate his brain to research into the links between the disease and the sport. In an emotional Zoom call , neuropathologist Dr Willie Stewart, confirmed their fear.  

The Stiles family may have been vindicated, but they are angry.  Because way back in 2002 West Bromwich striker Jeff Astle was named as the first British footballer known to have died from repeatedly heading the ball – and yet until recently no research has been done into the link. 

“That’s almost 20 years of players – men and women – at risk with no restrictions.  Unprotected.  Uninformed”, says Nobby’s son John, himself a former professional footballer.  “There is a cancer in football of denial and defence. These players need help and they need it now.  And there’s been virtually no help. That’s a disgrace”. 


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Cycling Away From Dementia

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

My guests on this week’s podcast are two people who met by chance in a cycling shop in Suffolk.  It was 2018 and one of them, Deb, had recently moved to the market town of Saxmundham, which she admits she’d never heard of and could barely pronounce when she and her husband took early retirement to move there. 

The second is Peter, a Suffolk man through and through who took over his father’s timber business and for whom the trees and woods of his county are as familiar as old friends and family.  He’s also a man who loves cycling and who, aged 50, was diagnosed with dementia.  Yes, that’s right.  Fifty.

Deb knew no one in her new neighbourhood.  And very little about dementia, other than holding the common and mistaken belief that it only came with old age, liver spots and false teeth.   Peter, slim, fit, and living with Alzheimer’s when she meets him, not only blows apart this myth but offers to show her some local cycling routes. And so an unlikely friendship begins. 

Like all the best friendships it’s mutually reciprocal, hugely rewarding for both, and based on trust.  It’s been captured in a remarkable book, brilliantly entitled Slow Puncture.  It tells of their year together and in doing so, lays bare Peter Berry’s tumultuous Alzheimer’s journey in his words.  So they are co-authors but it is Deb Bunt who has written it.  Peter simply can’t.  What’s more he will never read it.  He will never, in fact, read his own story. 

For Peter who, in the early days of his diagnosis, came seriously close to suicide not once but twice, cycling becomes his salvation.  “With every turn of the pedals I cycled away from dementia and became the man I used to be and not the man I was fast becoming,” he says. 

Having ridden his trusty old Claud Butler from Aberystwyth to Aldeburgh, raising £6,000 for Young Dementia UK, he plans a new challenge, this time with his new pedalling partner, Deb.  It is to traverse the four counties of East Anglia and, to give it an extra twist, Peter will cover the miles perched one and a half metres above the ground on a penny farthing.  Of course he will.  He’s Peter Berry.

The more the pair cycle together over the months, the more the trust builds between them and the more Deb learns, not just about Peter and his dementia monster, his ways of coping and his hidden demons, but about herself.   

Peter shows her the joys to be found in living in the moment and of celebrating the journey for what it is even if you lose your way and end up, as it were, in Orford instead of Framlingham.  “It is perhaps a cruel paradox that Peter’s dementia, which is chipping away at his world and shrinking it, has created a whole new world for me,” Deb writes. 

While in his turn, in his inimitable way, Peter tells her that while the condition’s taken so much from him – his income, his self-esteem, his future, he has taken a lot from it.  “I live every day; I enjoy every day even if I might forget it moments later.  They say you only live once, but that’s rubbish: you only die once.  You live every day.  And that’s what I fully intend to do”.   Perhaps now’s a good moment to mention that the sub-title of their book, Slow Puncture, is Living Well With Dementia.

Peter and Deb were wonderful guests: down-to-earth, funny and with some wise observations not only about dementia, but life.  Do listen to them, I hope you’ll find it half an hour or so well spent.   

Slow Puncture: Living Well With Dementia is available from Amazon, simply click here. 

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The Magical Power of Music

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

International soprano Lesley Garrett has delighted the world’s biggest audiences for over 40 years – from London’s Royal Opera House to America’s Hollywood Bowl. She’s performed with every leading orchestra as well as with the likes of Bryan Ferry and the Eurythmics, with whom she sang on the eve of the millennium, and has produced over a dozen best-selling albums. She’s also a familiar face on our television screens, presenting and appearing in countless shows.

Lesley encountered dementia when a close relative succumbed to it and says that even when her aunt became so ill that she couldn’t remember her own children’s names, “the sound of music she adored, sung by someone she adored had a tremendous effect on her. She would open her eyes, shake, and tears would pour down her face”.

So moved was Lesley by this experience that she became patron of a charity dedicated to improving the lives of people with dementia through music. It’s called Lost Chord, and it is because of our shared passion to bring music into the lives of those with this incurable condition that she and I came together for this podcast. I hope you enjoy listening to it as much as I enjoyed recording it.

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Bringing the Inside Out

“She doesn’t understand

It breaks my heart

As if someone pulled my heart out

It’s heart wrenching

It’s how she puts her hand to the window”.

A few lines which, just a year ago, would have been sad, but abstract and inscrutable.  Now, the last line tells us all we need to know.  These are the words of a relative visiting a loved one in a care home.  In Covid times.

Even if we haven’t been personally affected, the media is full of these stories – from care workers, daughters and wives, husbands and sons and brothers.  But as we all know, their tales are filtered, put in the context of a particular narrative, a certain newspaper’s agenda, a politician’s policy, an organisation’s standpoint.

Now the charity Living Words , whose founder Susanna Howard appeared on my first podcast series, has produced a book containing nothing but the words of 65 people living in, working in and visiting care homes across the country until the end of November last year.   Entitled Bringing The Inside Out, this is exactly what it does.


“Horrible/They can’t/I can’t join in/With them/See them/Be part of it/But I can’t/Have calls/And windows/But it’s not the same/What they call it?/The key/Just the key/An ordinary key/To keep me together …”

These are the understandably confused thoughts of someone with dementia who lives in a care home.  To read them is to feel their longing and nagging fear.  Emotions we’ve all been living with this past year to some extent, but heightened, exaggerated.

Some 70 per cent of care home residents live with dementia.  Professor Sube Banerjee, who introduced the UK’s first dementia strategy in 2009, puts the figure as high as 90 per cent.  Imagine how terrifying and strange the situation must seem to those souls.  There is a section of the book called “Untethered”.  It’s a word Nicci Gerrard, best-selling author and co-founder of John’s Campaign, used on my podcast to describe her father when he had dementia, and I think it’s a good word in this context.

Here is another quote from Bringing The Inside Out:

“She’s trying to get me through the glass/She banged her head trying to kiss me/And she says, “Oh, blackened me nose! Blackened nose!”/and she rubbed her nose/I said, “Oh Mum!”/And she grinned at me/She was trying to kiss me/Oh she’s a little sweetie”.

This charming passage, poem almost, really touched me.  There’s a vibrancy about it.  By including only the actual words uttered, the result is very different from a normal account which is threaded with the views and thoughts, conscious and unconscious, of the recorder – be they journalist, doctor or other professional.  Even friends and relatives imbue words with something of themselves; I do it all the time.   I’m doing it now.

Bringing The Inside Out is raw, uncut.  And like many rough proofs and unedited film footage, it is powerful because of that.  It is real.

Take this.  Entitled “Floating Around” it starts, “Bloody Awful/I would like to go home/And sit forever/But I don’t know where home is”.

Some of the poems (if I may call them that) have named authors, others are anonymous.  None of them tell you whether they were said by someone living in the care home (with or without a dementia), a carer or a relative.  However, you can look this up in the index at the back – though the words themselves usually make this pretty clear.

Susanna Howard, founder of Living Words

In her introduction Susanna explains that Living Words uses a technique called Listen Out Loud, in which the speaker speaks, the writer writes and the way that the words land on the page represents how the person has said them.  The language isn’t filtered, intentionally or unintentionally, in any way.

Vic Rayner, executive director of the National Care Forum, describes the book as “a living witnessing of words” and says its contents highlight the importance of relationships and the sense of community that lies at the heart of great care.

The words of Margarita Warburton, which make her role quite clear, exemplify Vic’s sentiment:

“I think, I feel and I see this double isolation/not just in my own home/also, in the workplace./Because families can’t visit our residents,/all the support and energy is from us.

“But I really love what I do.

For this type of work, you need to have the heart, the soul”.

Sebastian Crutch, the professor of neuropsychology at the Dementia Research Centre, University College, London, writes in his foreword,

“Within these pages, the stories of those too often marginalised in our society are given space to breathe, and the true human cost of this pandemic may be found”.

He is right, and I would urge everyone to take a minute or two to leaf through this gem of a book and hear, from their own lips, the thoughts and fears, the hope, despair and love of everyone who’s contributed.

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Listening is Key

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

In 1998 Sarah Reed was an award-winning creative producer and single mother of two, when two events shattered her world.

The first was a brush with death when a burst appendix left her unconscious for nine hours in A & E, followed by a four-day stint in intensive care.  She spent the next three weeks recovering in a hospital ward overlooking a large London cemetery, an experience that made her realise that we’re all a long time dead, and left her questioning, as she puts it, “pretty much everything about my life”.

Four weeks later her dad called to say that her mum, Mary, had been diagnosed with Alzheimer’s disease.

Before the diagnosis she and her mum hadn’t been that close; Sarah had left their home in Faversham, Kent for art school at 16, since when her life had been busy, revolving around her demanding film work and bringing up her children.

Over the next decade, as Mary’s dementia progressed, a newfound bond developed between them.  “We learnt a new, more grown-up confidence with one another”, says Sarah.  In 2000 Mary moved into a care home.

Sarah soon realised that while kindly and well-meaning, the staff had little or no communication training – and her frustration developed into a passion to try to help carers provide better care.

Her mum was forced to move care homes twice and as Sarah’s knowledge of dementia grew she began to realise that staff couldn’t hope to develop a relationship with their charges if they didn’t know anything about them, and in order to find out about them they needed to be able to communicate with them.  Sarah resolved to do something about this.

At a personal level she compiled an album of photographs from her mother’s early childhood through to her years as a great grandmother.  When Mary saw the album she glowed with pleasure – although confused by the present, her mum was brought alive by the past.

And thus the idea for Sarah’s award-winning Many Happy Returns Chatterbox Cards was conceived.  Painstaking research into not just dementia, but compassion, philosophy and reminiscence therapy, led to cards skilfully designed to prompt conversations with older people.  Two thousand cards based around the 1940s were launched in 2008.  The sets sold out in three months.  Today, some 9,000 sets of 1940s and ‘50s cards can be found in care settings, libraries, schools and private homes around the UK.

Sarah went on to develop interactive communication workshops to help care staff communicate more meaningfully with residents.  She believes that “Good communication sits at both the heart and pinnacle of good care”.

Mary died in 2009, aged 92.   Dementia may have taken her mum from her, but Sarah tells me that it also, in a way, gave back.  “Caring for a loved one helps teach you a love you did not know was possible”, she says.  “It’s a feeling of understanding, forgiveness and, eventually, closure”.

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RIP Dame Barbara Windsor

Barbara Windsor in 2010, Wikimedia Commons

I woke up this morning to the news that Dame Barbara Windsor has died aged 83. She was a national treasure.  And never more did this petite figure with the big heart and the golden smile live up to the accolade than when, in her final years, she let the world know that she had dementia.

Diagnosed with Alzheimer’s six years ago, in 2018 she and her husband Scott Mitchell went public with the news.    In so doing they delivered us all  a huge service, helping to diminish the stigma around a cruel and much misunderstood condition that now afflicts close on one million people in the UK.

So in memory of this wonderful woman, and in tribute to both her long career spanning the Carry On films and Eastenders, and her courage in speaking out, I’m reposting a little of what I wrote back in 2014 to thank her and her husband.

At the time Scott said they’d decided to go public so that if, when she was out and about, Barbara acted uncharacteristically, people would know why and “accept it for what it is”.

This is so, so important.  When entertainment royalty such as Dame Barbara Windsor speak out about their dementia it makes headlines, generates discussion, raises awareness, and increases knowledge, of a hugely feared condition.

In less than 48 hours Scott Mitchell’s announcement about his wife’s dementia projected the topic into everyone’s lives.  All the national newspapers carried the story, many with double-page spreads.  Radio 4’s PM programme ran a lengthy interview with Formula 1 racing legend Sir Jackie Stewart, whose wife Helen has frontotemporal dementia.

He spoke informatively, fluently, personally and courageously about what Helen’s illness has meant for them in ways that will resonate with thousands of families up and down the country.  He described how, because of the wealth he’s accrued, he can afford specialist nurses for his wife whereas others, less affluent, less fortunate, cannot. Staggered to discover that there is no cure, Sir Jackie has launched a charity, Race Against Dementia, to fund research into the condition.

On the BBC Breakfast television show a panel including author Wendy Mitchell, who lives with Alzheimer’s, discussed Barbara Windsor’s diagnosis.  In just a few minutes several key points were beamed into households the length and breadth of the land.  The main, crucial, message being that with more knowledge of the condition, the public could better appreciate how it affects those who have it and show them more tolerance, more patience, more understanding.

Wendy Mitchell with her daughters Gemma & Sarah

I don’t know if she’s fully aware of it, but Wendy Mitchell is a journalist’s dream.  She speaks in near perfect (and unusually sensible) soundbites.  I say this – I hasten to add – in a spirit of awe and appreciation.  It is one of those things that seems so easy yet is very, very hard to achieve, particularly on live television in front of 1.5m viewers.

“Dementia is like a cruel game,” she said.  “Some days it throws a curved ball at you but because I’m such an optimistic person  I say that tomorrow might be better.  If you dwell on the sadness of bad days, it is a day lost of happiness”.   A day lost of happiness.  Her inversion of the words merely adds to the power of the sentiment.

Wendy’s fellow panellist Simon McDermott sprang to the nation’s attention two years ago when he uploaded YouTube videos of his father Ted (who has Alzheimer’s) singing in the car.  The films soon went viral and the Songaminute Man was born.

In an echo of the devastating condition itself – whereby a single diagnosis has an overwhelming impact, on not just one individual but an entire family – when a celebrity and his or her loved ones decide to go public with a dementia diagnosis, the benefits ripple outwards, causing a cumulative, positive effect.

It is all part of the soft power of culture.  Slowly but surely as more and more of those in the spotlight choose to speak out – think of author Terry Pratchett, actress Prunella Scales (who, together with her husband Timothy West, featured in seven television series about the couple’s canal boat trips following her diagnosis), Sir Jackie Stewart and his wife Helen – the public’s knowledge and awareness of dementia grows, silence gives way to understanding, fear subsides, stigma fades.

The famous have a platform and unrivalled power to use their well-trained voices.  But dementia – as anyone who has it or whose loved ones have it, knows only too well – is also very personal, involving complex, competing emotions.  It takes a brave person to talk out.

Which is just what Dame Barbara was.   She died at 8.35pm on 10 December at a London care home.  Her husband Scott said that the actress’s final weeks were “typical of how she lived her life … full of humour, drama and a fighting spirit until the end”.   

All we can say is thank you Babs, for everything.

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Mike & Tom. A love story.

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

Mike Parish and Tom Hughes have been together for 45 years.  Theirs is a love story, and I’ve found researching their lives, witnessing the tenderness, concern and pride that flows between them – very moving.  And a reminder of the beauty to be found in us flawed human beings.

But their story also has an ugly side.  For much of their lives these two men have been the victims of prejudice, rejection, violence even.  One of them still bears the visible scars.  The unseen, emotional cuts run deeper still and have lingering consequences.

Five years ago Tom was diagnosed with dementia.  He can no longer speak, he loses his way.  Mike, his lover of almost half a century, holds his hand to guide him.  The painful irony is that for decades into their relationship this couple daren’t hold hands in public because they’re of the same sex .

Now, in different ways, they find themselves yet again confronted with discrimination. It’s not aggressive this time, or even intentional.  But it’s there, in the preconceptions voiced as they attend countless medical and social care appointments, where they are routinely assumed to be father and son or a carer and his charge.  In constantly explaining who and what they are they face a sort of endless coming out.

I would love to have chatted to both of them, but Tom is now non-verbal and in these strange Covid-19 times it simply didn’t work when we tried to include him in the podcast.  It is so sad, but it reveals the stark truth about dementia: it’s a progressive disease, and there’s no getting round that.

But as Mike and I talk, Tom is never far away.  Mike says he and Tom are true soul mates, telling me about the Greek myth that lies behind the phrase – that we humans were originally created with four arms, four legs and a head with two faces.  But Zeus split us in two, so we’re all searching for our other half.  To complete us.

“When the two halves meet there is an unspoken understanding of one another, they’re unified and know no greater joy,” says Mike.  “This was what we both felt when we met, and still do”.

It was in 2008 that Tom, an NHS pensions manager with an astute mathematical brain, began to experience memory problems.  Five years earlier he’d been diagnosed with HIV but medication had kept him well.  However by 2011 his worsening symptoms, including trouble understanding new tasks, forced him to retire.

There were other signs that things weren’t quite right: teaspoons continually went missing (it transpired Tom was throwing them away), while bottles of handwash kept appearing, at one point there were 23 under the sink.  Finally, when they went out to a restaurant and Tom ordered only for himself, Mike knew he could no longer ignore the signs, and in 2015 Tom was diagnosed with HIV-associated neurocognitive disorder, or HAND, a very rare form of dementia.  Soon afterwards Mike gave up his job with the fire brigade to care for him, experiencing what he describes as a tsunami of shock and grief.

It’s been through telling their story that he and Tom have found a way to move on.  They started by sharing their experiences with dementia support groups and were soon invited onto national television and radio, and to speak at universities, hospitals, care homes.  Being a same-sex couple experiencing dementia proved relatively rare and Mike felt a responsibility to reach out to others.  It turned out to be of huge benefit to all.

“There’s a powerful positive outcome from storytelling,” says Mike.  “It comes from the hope that what you’re doing may help others and it also gives a sense of normalisation, validation and the strength to carry on”.

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Kate Lee, daughter & CEO

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

My guest on this week’s Well I Know Now podcast is the chief executive of the Alzheimer’s Society, Kate Lee.

As well as being a CEO, Kate’s a wife, mother and daughter. Her 80-year-old mum’s vascular dementia is now so advanced that she lives in a nursing home and can’t talk; the only way Barbara can show her daughter that she loves her is to hold her hand. At the moment, of course, along with thousands of others, these two can’t hold hands, or meet, or hug or be together in any meaningful way, at all.

A few weeks ago Barbara’s husband of almost 60 years was persuaded to go and visit her so that he could wave through a window. I saw a short video of this on Twitter and was very moved – the accompanying tweet from Kate said, “On a freezing morning, with our backs to the wind, we waved and shouted to mum through a window”.

So it’s quite obvious that the woman heading up the Alzheimer’s Society brings a very personal perspective to her new role.  Since taking up her post just a few days before the country went into its first Covid lockdown in March, she’s not been afraid to talk about what she and her family are going through in the national media and social media.

We talked a lot about her own family’s story, about the challenges of being both the daughter of someone living with dementia and the CEO of the UK’s biggest, most influential organisation in the dementia sector, about the realities of the condition (which aren’t always quite as they’re portrayed in the movies), about the tricky role of a close relative who lives some distance from his or her loved one and isn’t a primary carer but wants to help.

And of course we talked about how the Alzheimer’s Society has responded to the coronavirus pandemic, particularly the vexed issue of care home visiting, and her vision for the organisation’s post-Covid future.

Visit the Alzheimer’s Society online here:

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Nicci Gerrard

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

Author, journalist and campaigner Nicci Gerrard is a pocket dynamo of warmth and energy.  She speaks quickly, words tumbling out of her mouth, compelling us to see things in new and different ways.

In 2014 she co-founded John’s Campaign with Julia Jones. Its aim is simple: “that the carers of those with dementia should have the same rights as the parents of sick children to accompany them to hospital” and its inspiration came from her late father, the doctor and scientist John Gerrard.

For ten years John, who had a deep love of nature, lived well with dementia. “He was”, says Nicci, “going gradually into the darkness”.  But this ended with a “sudden rupture” when John went into hospital with leg ulcers and remained there for five weeks. Strict visiting hours, plus an outbreak of norovirus, meant that this man, who’d entered healthy, mobile, articulate and contented, emerged skeletal, immobile, inarticulate, unable to recognise people he’d lived with for decades.

John’s experiences and the resulting campaign led Nicci to explore dementia practically, through talking to doctors, carers and those living with it, and more profoundly, in philosophical, almost existential ways.

The result is her quite beautiful book, What Dementia Teaches us About Love. “What happens when memories are lost? Who are we then?” she writes. “If we are out of our mind, where have we gone? If we have lost the plot, what happens to the story we are in?”

Most recently, as Coronavirus has swept across the globe and the doors of this country’s 21,000 care homes have clanged shut, John’s Campaign has turned its attention to those who live in them, 70 per cent of whom have dementia. Their relatives have been unable to visit them for months, leaving these vulnerable people bewildered and heartbroken because they think they’ve been abandoned by those they love.

Which is why John’s Campaign asked the Government to review the guidance around care homes. Family carers, say Nicci and her fellow campaigners, are not visitors but vital to the health and selfhood of people with dementia, and should be recognised as such, and given the same protection, testing and status as key workers.  Government guidance was updated in the middle of October but John’s Campaign said at the time that this only made things worse and they are not giving up the fight.

“In the name of infection control, great harm is being inflicted,” Nicci wrote in the Guardian. “People can die of heartbreak.”

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Dr Jennifer Bute

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

In the face of some adversity Dr Jennifer Bute has a tremendous appetite for life and thirst for knowledge, and a passion for sharing that knowledge with others.  Sharp, intelligent, down to earth and modest, she became Hampshire’s first female Fellow of the Royal College of General Practitioners when she was already succumbing to Alzheimer’s disease.  She also possesses a wonderfully dry sense of humour.

Dr Bute regards the dementia with which she was diagnosed in 2009 not as a life-shattering disaster but a gift – to use her words, “a glorious opportunity”.  She is a remarkable individual with a strong Christian Faith.

She says that her condition has enriched her life because she now knows the condition, not just as a professional, or as a relative (her father also lived with dementia) but from the inside.  In 2018 her book, Dementia From The Inside, A Doctor’s Personal Journey of Hope, was published and is available from Amazon in paperback and Kindle

Her website contains a myriad of resources, including information on the fascinating Japanese Memory Groups that she runs at the dementia-inclusive retirement village where she lives in Somerset.  Dr Bute also has a Facebook page, again called Glorious Opportunity  And for more about her you can also read an earlier blog I wrote about her here: 

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The Professor of Hope

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

Professor Sube Banerjee is that rare beast: an esteemed clinician and academic with a tremendous way with words and bucketloads of empathy.

Last year he was appointed Executive Dean of Plymouth University’s cross-disciplinary Health Faculty, where along with his many other responsibilities, he jointly heads up Radio Me, a ground-breaking project that uses artificial intelligence to tailor live radio to an individual’s needs.

Previously, while Professor of Dementia and Associate Dean at Brighton and Sussex Medical School, he led research into the quality of life and care of those with dementia. “We have to focus on what individuals can do”, he says, “not what they can’t.  Kindness is the core.  And hope.  I sell hope”.

Professor Banerjee also pioneered a world-leading education programme called Time for Dementia, in which healthcare students regularly visit and talk to families of people with dementia to gain a deeper understanding of the long-term impact of the care that they themselves – as future doctors, nurses, occupational therapists, physios – will deliver.

In 2008, he led the development of the country’s first national dementia strategy – a huge step towards changing the way the condition is viewed, by both Government and public.  The professor was determined that it should be crafted and informed by those who really understand dementia, that is the people living with, and affected by it.  Today, this approach is becoming more common.  In 2008-2009, it was nye on revolutionary.

He describes dementia as the prime exemplar, globally, of the complexity of challenges facing health services of all sorts.  I totally agree, which is why I was so keen to talk to this warm, articulate professional.  I hope you enjoy listening to him as much as I enjoyed (virtually) meeting him.

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Jenni Dutton’s Dementia Darnings

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunesAcastSpotifyGooglePodtail or Castbox.

Jenni Dutton’s tender, unsqueamish relationship with her mum has much to teach us as a society.  Somehow she found the wisdom and humanity to look steadfastly at what it is to be a failing mind in a wasting body and feel nothing but compassion, love and joy”.

Jenni Dutton’s mum portrayed in her Dementia Darnings

Not my words, but those of Nicci Gerrard, best-selling author and co-founder of John’s Campaign.  They sum up perfectly what the multi-media artist has achieved through her extraordinary Dementia Darnings – a series of large portraits of her mother created through running stitch and based on photographs from different stages of her life, including her final years with vascular dementia.

The idea for the Dementia Darnings came when Somerset-based Jenni became her mum’s carer, changing her, washing her hair, becoming more intimate with her.  Jenni wanted to support her mother while also continuing her own life, her work, her art.  When she realised that her mum still recognised loved ones through their photographs she realised that this could be the way.

Jenni Dutton’s mum when young

The pieces have an ethereal, fragile beauty – from some of them hang loose, trailing tails of wool that evoke the unravelling of the brain, losing one’s thread, mending and repair, the knots and tangles of Alzheimer’s disease, and the many and varied strands of life.

“I’m exploring loss,” says Jenni, who constantly questioned the meaning and motivation behind the Darnings.  Was she creating them to describe her mum’s slow deterioration, to honour it, to cause controversy?  Was she exploiting her mum?  She decides that if the work is done with compassion and love, that must surely be okay.

“As family members die or lose their memory, photos are all we have” she writes in the diary she kept as she worked.  “Their importance cannot be qualified, the image becomes the truth of our past.  And the work is about me too, and my place within the family as my mother fades.

“At the moment this work is the constant thread that binds my life together, stops it falling apart”.

Jenni Dutton’s mum as her dementia progresses

When her mum goes to live in a care home, Jenni feels bereft and wonders, “How will I unpick my life from my mum’s life?”  She takes photos of her mum in the care home as her dementia progresses and she becomes more frail.  Continuing the Darnings, Jenni realises, is a way to keep the two of them close.  “By working as hard as I do, it gives my life some validity, and also keeps my mum valued”.

The Dementia Darnings have been exhibited around UK, Dublin, the Hague and China, and will be shown in the US and Australia in 2022.   Their impact on those who came to see them before the Covid pandemic was profound and universally positive.

“Your Darnings to me are like a picture of love”, says a man called Phil.  “They reflect the gaze I think we all want to feel on us – accepting, not demanding, neither clinging hold of nor rejecting. I have often thought that in the process of dying that is what I want more than anything, but it goes just as much for living as well”.

Jenni’s mum died in 2015, aged 92.  Jenni describes this as the most profound experience of her life.  “No pain and no fight – just a glorious amount of gloriousness”.

Jenni is now working on a similar series about her own ageing called, wonderfully, The Absurd Sewn Selfies.  Having been so anxious about whether the Dementia Darnings exploited her mother she decided to turn her focus onto herself, a subject over which she need have no such qualms.

Though, very sadly, we can’t see the Dementia Darnings in the flesh (or wool) at the moment, I can’t urge you strongly enough to visit Jenni’s website:

Jenni Dutton in her Absurd Sewn Selfies

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We Will Remember Them

My dad Arthur Kelly & his Second World War medals

Jack sits by the river in his garden.   The shadows are lengthening and a silver disc of moon has appeared in the sky.

Trees stir and on the damp twilight air he scents the smokey-grey sharpness of a bonfire.  He can’t smell it without remembering.  He’s never spoken of it to anyone – not even Kate.   In 56 years of marriage he couldn’t find the words.

He remembers now.   It was moonless.   They’d stopped, 800 yards off shore.  Raid over, the searchlights dim.   All quiet.   Waiting.   A single, stray strobe arked slowly over.  “Keep off there, keep off.”   Jack whispered his prayer.   But the light touched the water, swept left to right and caught them in its beam.

Jack shifts in his chair.  His thin, 87-year-old buttocks hurt.   This morning he went to church with his daughter Lucy and her son Tom.  Only day of the year he goes.  He doesn’t believe in God.   But he believes in honouring those who never made it home.  He wore his medals to the service, including the Africa Star for that suicidal mission.

Soon as the searchlight hit them, the guns opened.   A shell exploded in the fo’c’s’le.  Jack stumbled up the ladder, lifted the hatch and, gagging on the acrid smoke, saw it.   Saw the indescribable, unforgettable, horror of it.  A pile of bright pink, hairless, skinless meat.

He had to get to the other side of the deck.  He didn’t know what to do.  He did the only thing possible.  He walked on top of his mates.  His heavy boots slipping and crushing and smashing over roasted men.

This morning, a stranger came up to his wheelchair at the cenotaph on the village green.  “Thank you,” she said.   Two words.  Loaded and powerful as mortars.   Lucy didn’t seem to realise what the woman meant.   But Jack did.

Lucy protested at Greenham Common and marched on Parliament when Prime Minister Blair took the country to war with Iraq.   Good on her!   Although Jack’s never said it, he’s always been proud of fierce little Lucy and her firebrand ways, despite disagreeing with many of her views.

In the distance, Jack sees a shape making its way down the path from the house.

The ship’s cook caught it in the next blast.  One second the burly chap was mid-sentence beside him, the next he was facedown.   When Jack turned him over his warm, liver-red intestines slithered onto the deck.   War is inhuman.  It’s unjust, random and brutal.  Lucy’s right of course.

He realises that it’s his grandson approaching.   Jack’s fond of Tom, who’s in his final year at school and destined for university.  He’s grown closer to him since his parents split up, and the two sit and talk.  By the time Tom wheels Jack up to the house, it’s dark and Lucy’s calling impatiently.

After supper the men disappear into Jack’s study.  When Lucy looks in she sees Tom holding a small box.  She knows what’s inside.  “Time we were off,” she says sharply, but Tom has some news.

Lucy can’t believe what she’s hearing.  She tries her best to change Tom’s mind, but it’s too late: he’s made his decision.  Jack keeps quiet.  He’s too tired to argue, and understands too well a mother’s fear for her son.    As Tom and Lucy leave she rounds on her father.  “You and your war stories – look what you’ve done!”

Once Tom starts his training, Lucy returns to full-time teaching.   She visits her father less often.  She blames it on work, but Jack suspects she’s never forgiven him for “turning” Tom.   He says nothing.   He’ll soon be gone anyway; he can feel it in his bones.

Tom’s leading his battalion in Basra when he hears the news.  He brings forward his leave to go to the funeral.   Among the mourners are a handful of war veterans.  They watch Tom, tall in his uniform, and know he’s one of them.

Lucy stays strong all day.  Then, when the prayers have been said and the hymns sung, she comes to sit beside the river in her father’s garden.  In her hand are Jack’s medals.  She’s never looked at them properly before, never touched their ribbons or felt their weight.   Grief, which she thought she’d exhausted, catches her unawares.  More than anything else, she realises, these pieces of metal, these war honours, are him.

Replacing the medals as the light begins to fade, she spots, tucked under the velvet lining, a piece of paper.   It’s a letter.

She doesn’t notice Tom approaching until his shadow falls across her.   He sees what she’s reading and sits down beside her, waiting for her to finish.    Lucy looks up.  “He never told me,” she says,  “that you argued that night.”

Tom’s surprised.  “I assumed you knew.”

“He was protecting you from my anger,” says Lucy.   “Giving you cover, just as you’d expect him to.”

Tom sighs.  “He tried so hard to talk me out of joining up.  He’d experienced war and he hated it.   And once I’d seen what he’d seen, done what he’d done, I understood why.  I wrote to him from Iraq to let him know he was right.”

“Yet you still do it, “ says Lucy, her voice urgent with worry.  “Still fight – still put yourself in danger every day.  Why do you do it?”

Tom wants to explain, but he can’t find the words, any more than Jack could.   He shakes his head.  “You, of all people, should know mum – you were his daughter, you’re my mother.”

A shaft of low, golden light touches the water and catches them in its beam.  The sun’s going down.

Lucy holds out her hand.  “He’d want you to have these.”

Tom’s not sure.   He knows what his mother thinks of war.

But Lucy insists.    For she realises now, at the end of Jack’s day, that nothing she can say or do will change her son.  He’s his own man – as strong-willed as her and as brave and determined as the father she’s just buried.   He’s flesh of her flesh.   A soldier.   It’s in his blood.  He can’t escape it, and neither can she.   All she can do, as she gives him Jack’s medals, is whisper her prayer.


I wrote this story some years ago for the Sunday Express. It’s based on my dad’s account of the Siege of Tobruk, where he saw action in 1941, and on something that happened at the last Remembrance Sunday Parade he was able to attend.  It was 2007; a stranger came up to dad as he sat in his wheelchair, medals proudly displayed on his chest, bent down and said simply, thank you. 

I think we’ve all become a little more reflective during the Covid pandemic so please forgive me for posting this personal blog today, in memory of my dad and all those who fought for our freedom. 

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Human Connections

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: Apple iTunesAcastSpotifyGooglePodtail or Castbox.

To launch my second series of Well I Know Now podcasts I talked to the multi-award-winning star of stage, screen and television Glenda Jackson.

Her career is remarkable, not only for its dizzying success, its longevity (she was playing King Lear on Broadway last year), its unparalleled range (she took time off from acting to be a Member of Parliament for 23 years) but its beginnings. If it hadn’t been for the intervention of her Boots manager, who asked Cheshire County Council to pay for RADA , the teenage Miss Jackson might never have become an actor.

I interviewed her to talk about her BAFTA-winning role as Maud in the BBC film of Elizabeth is Missing. This intriguing whodunnit, based on the excellent novel by Emma Healey which I reviewed here, also provides a deft exploration of dementia and the strains that it places on family life.  Glenda plays Maud who, while in the early stages of dementia, sets out to find her missing friend Elizabeth and in so doing solves a 70-year-old murder mystery.

The actress and I chat about why she took on the role; how we as a society can no longer ignore dementia; the financial, emotional and practical challenges facing those who live with it and their families and the part that the state plays in all this. 

We also talk about ageing, which Glenda believes fractures and frays the gender boundaries – a fascinating idea which I’ve not previously encountered.  And the way in which an ideal society has parallels with one of those magical pieces of theatre that completely captures its audience – both are bigger than the sum of their parts, require everyone involved to play their role and generate a positive, reciprocal energy. 

The daughter of a bricklayer and a cleaner, the girl from the Wirral has come a long way and never lost touch with her roots, her work ethic or her humour.

NB At the time of posting this blog the podcast wasn’t available on Apple through a laptop – though bizarrely it was on an Iphone! – so if you can’t find it on Apple try any of the others. It IS there!

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Where Memories Go

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: Apple iTunes, Acast, SpotifyGoogle, Podtail or Castbox.

For my series finale I chat to Sally Magnusson, distinguished broadcaster, journalist, author and founder of the music and dementia charity Playlist for Life.  It’s a podcast filled with music, memories and laughter.  Sally was a truly wonderful guest.  I’d met her before and in 2014 I wrote this review of her inspirational book about her mother Mamie Baird and how, right up until the very end of her life with dementia, Mamie loved to sing familiar songs.

When her mother developed the condition Sally started writing about her in an attempt to hold onto the wonderful woman she adored . Where Memories Go – why dementia changes everything” is a memoir so beautifully written that at times it reads like a love letter from a daughter to a mother.

It is also, as its title suggests, something else altogether: a journalist’s investigation into what it means to be old and infirm in today’s society – more particularly, what it means when a family is touched by one of the cruellest, most misunderstood conditions of our day.

In bringing together the two halves of the story Sally Magnusson has achieved a remarkable feat.  She has humanised, personalised in a way I’ve not encountered before (and I’ve read a fair bit about dementia) one family’s hard, heart-breaking, occasionally funny, roller-coaster ride with this pernicious disease.

Being a journalist, she’s also tracked down medical experts, asked them searching questions about the what, why, when and how of dementia and relayed her findings in the easiest, most comprehensible fashion.

The book is a celebration not only of her mother Mamie Baird, the charismatic slip of a girl from Rutherglen who bewitched a young Icelandic reporter (later to achieve fame through Mastermind) and went on to make writing her career, but also of words – of the tools of the trade that Mamie refuses to relinquish to an implacable foe.  It should be read by anyone with a love of language or an interest in dementia, or – as in my case – both.

“I tap late into the night, eager to round up your slippery self before it slides into yet another shape,” says Sally, attempting to retain a mother on whom the condition is already fairly advanced.  “If I can only pin you by the bullet point, secure you with headings, trap you in words, corral you within a list, then perhaps I can hold you beside me here for ever, the mother who clapped her hands to see the snow at night, who has lost so much of her self but not yet, not yet, the thrill of being alive.  So I write my list.  And somehow it happens that I find myself talking to you”.

In this way, with her fluid, lyrical prose Sally pulls us into Mamie’s life and her family’s story – and offers up a philosophy for a better world.

“Dearest mother, as I watch your own sparky intellect flounder and your very identity dissolve before my eyes, I am beginning to conclude that dementia holds a dagger to the heart of Western morality. It confronts us with profound philosophical as well as scientific questions about what it means to be human. It challenges our social complacency and our financial priorities. It compels us to ask whether we have any right to call ourselves a civilised society at all”.

When Mamie is admitted to hospital with a broken hip, her stay reveals hard-pressed nurses with little or no dementia training, ill-equipped to communicate with their patients and inured to their needs, a place riddled with the “endemic thoughtlessness that stems from not seeing the individuals behind the zimmers”.  The very opposite, of course, of the oft-repeated mantra of person-centred care.

When she is discharged, her daughters vow that their mother will never go into hospital again.  Yet Sally knows enough of dementia to recognise that these are wider symptoms of a pernicious condition that affects not just those who have it but their loved ones and carers.  “In fact, I am even starting to wonder if this might be a disease that turns all but the most saintly carer into a kind of monster in the end … something I will have cause to consider in the months to come when I stare into my own mirror”.

Despite this, it is obvious that the Magnussons are fundamentally happy and optimistic people who, to quote Robert Louis Stevenson, “up the rude, unbieldy track/O’life, gang gaily”.  Rather than dwelling on the darkness of dementia or sticking to rigid chapters of information, Sally’s writing soars and glides with the natural rhythm of a born writer, from facts and figures to tender emotions.

Her book holds some of the clearest accounts of what Alzheimer’s does to the brain.  It also explores what it is to be human, what it is to remember – and even shows us, through the microscope of Dr Gunn-Moore, the glittering thread-like cells that could be said to constitute the place where memories go.

Sally marvels at the miraculous way in which, even as her mother’s neurons fail – as her strings of Christmas tree lights flicker and die and rob her of her memories – she retains the ability to sing songs from her youth.  In an attempt to discover why, Sally flies to New York and visits, in a run-down area of the Bronx, the Institute of Music and Neurologic Function.

Dr Concetta Tomaino has the answer.  It is down to the numerous elements involved – rhythm, melody, harmony, pitch – when the brain processes music.  Because of this, many different parts are used, including the primary ones that only stop when we die.

“It’s like when you have a tip of the tongue phenomenon,” the doctor explains.  “You would remember if you just had an extra clue.  Well, music, because it involves so many brain areas, is actually providing multiple clues”.

Dr Oliver Sacks, who co-founded the institute with Connie Tomaino, has another image.  “The past, which is not recoverable in any other way, is embedded in the music as if in amber”.

Sally, the writer, her mother’s daughter, puts it like this: “The past embedded in amber.  Music, the one thing dementia cannot destroy”.

And it doesn’t, not for Mamie.  Up until the final stages of her life in April 2012 when she is lying in bed, little more than what someone once mercilessly described as “a breathing cadaver”, she is whispering the words of a song, “For you and me, for us and we/All the clouds have rolled away”.

Sally’s description of this intimate scene gets to the nub of what, in a deeper sense, her book is about.   The self.  And society’s view and treatment of this precious, intangible thing.

Dementia famously strips a person of his or her identity.  Where Memories Go explores whether this sense, this taste, of being oneself and remaining oneself, retaining one’s identity, can withstand dementia.   Its author has viewed the question through the eyes of philosophers, through the theories of neuroscientists and quantum physicists, through the beliefs of theologians and, inevitably, through the words of poets.

Now, sitting with her mother as she nears her end, Sally muses that anyone seeing her “would surely imagine there was nothing more to this inert form than hollows and shadows and bones poking through polished skin.  They would never have guessed that you were inside.  You, the woman with a head crammed with songs.  You, the mother who has remained a mother.  You, the lover of words who has continued to conjure them from somewhere until almost the very end”.

Yet of course she’s still there, the person she was, the woman she was, the mother she was – inside.  Everyone is.

“You are Mamie” says her daughter, “the only one there has been or ever will be.  You are you.”

This is the profound and universal message of Sally Magnusson’s exquisitely written personal story and you and I, whoever we are, would do well to remember it.


In 2013 Sally founded Playlist for Life, a charity enabling the families and caregivers of someone with dementia to create a playlist of uniquely meaningful music on an iPod and offer it at any time of the day or night.

Where Memories Go is published by Two Roads Books.

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Why My Care Matters

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: Apple iTunes, Acast, SpotifyGoogle, Podtail or Castbox.

My guest on this week’s Well I Know Now podcast is witty, articulate, energetic and pragmatic.  She’s a doer, not a moaner.  When her late husband’s dementia meant that he could no longer tell his carers what he wanted or needed, Zoe Harris came up with a simple yet very effective way to overcome the challenge. 

The result, some years later, is her stable of highly successful enterprises, all designed to help those for whom communication is difficult to convey their wishes.   These range from Care Charts UK and My Care Matters to My Future Care.  It was a delight to chat with Zoe, who I’ve come to know well through my dementia work – and she still managed to surprise me with some of her stories. 


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Barbara Pointon

Barbara and Malcolm Pointon

My family and I owe an enormous debt of gratitude to Barbara Pointon MBE, who has died aged 80.  And it’s not just us who have cause to thank her.  Thousands of families across the UK have benefited from the landmark case that this Cambridge music lecturer won in 2004, establishing the right for state-funding health care known as NHS continuing heathcare (CHC) to be provided to people in their own homes.

In 1991 Barbara retired from her job to look after her husband Malcolm when he was diagnosed with Alzheimer’s aged 52.  After seven years of caring for him at home, Barbara reluctantly moved him into a care home, paid for by Cambridgeshire health authority.

But after just two years, shocked at her husband’s deterioration, Barbara brought him home again. At this point, in 2000, the health authority said that it would no longer pay for Malcolm’s care because it was deemed to be social care, not requiring a nurse, and would therefore be means-tested.

Barbara took advice from the Alzheimer’s Society and appealed against the decision.  Eventually, the health service ombudsman upheld her complaint, ruling that the CHC assessment had not taken sufficient account of Malcolm’s needs, and also that the care he received from his wife was equal to that he would have received in hospital.   The judgement meant, crucially, that being cared for at home by a family member was no longer a barrier to receiving CHC.  The Pointons were awarded CHC funding of £1,000 a week.

Their story was told in two ITV documentaries, Malcolm and Barbara: A Love Story in 1999 and Malcolm and Barbara: Love’s Farewell in 2007, the year Malcolm died.  Barbara said they agreed to take part in order to “blow the doors and windows open” on dementia, which at the time was even more feared and misunderstood than it is today.

In this they undoubtedly succeeded.  As Kate Lee, chief executive of the Alzheimer’s Society said of Barbara’s death, “Her willingness to share her story on film made a huge impact on the national conversation around dementia, reassuring countless people that they weren’t alone in their experiences”.

Hearing that Barbara had died – poignantly, she too developed dementia in 2018 – took me back fifteen years to when I cited her case in my long battle to gain CHC for first my dad, who suffered a series of strokes that left him bedridden, immobile, being fed by a tube in his stomach, and then my mum, who lived with dementia for over a decade, the last few years of which she too was confined to bed, immobile, unable to speak and being fed pureed food by her carers.

Rereading the complicated ombudsman’s report into Malcolm’s case, I was reminded of the “diagnostic support tool” – a tick-box form in which various categories such as mobility, nutrition, communication are scored from “no needs” to “severe.”   As you might imagine, when I completed this I scored both my parents’ needs as severe in several categories.

I remembered how often it was reiterated to me that CHC was awarded only when someone was judged to have a “primary health need”, not a social care need – as a result of which, so I was told, there was no way my mum, with her dementia, would receive it.  I successfully argued for both my parents that just because their health needs were being well met – my dad’s carers lived in his flat, mum was cared for in a nursing home – didn’t negate the fact that they both had severe, primary health needs, and as such they both qualified for CHC, dementia or not.

But more than anything else, reading about Barbara and her years of caring for Malcolm while battling the NHS – the very system designed to help them – I remembered the relentless, soul-crushing misery of it all.  The overwhelming helplessness, the anger, grief and never-ending frustration came flooding back.

The CHC case that Barbara won for her husband not only ensured that people could receive state funds for care delivered in their home, but was an important step towards the NHS recognising that those with dementia have health needs, met through healthcare that is free at the point of delivery, not merely social care needs that are means-tested.  In other words, that dementia is no more a natural part of ageing than cancer or heart disease, but a health condition.  Malcolm Pointon was 52 when he developed it – 40,000 people under the age of 65 live with dementia today.

As Dr Nori Graham, vice-president of the Alzheimer’s Society said, “Barbara was absolutely key in the establishment of the right of carers of people living with dementia to receive free NHS care at home.  The right to continuing healthcare funding at home only came about because of Barbara’s relentless fight for it”.

This brave, determined woman fell and broke her hip in May and died some weeks later, during lockdown, which meant that her family had not been able to see her face to face for well over two months.  A sad ending to an extraordinary individual to whom thousands of us owe so much.

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Well I Know Now

You can hear my podcast, Well I Know Now, by clicking on any of the links below:

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It’s six years since I started my dementia blog and I’ve lost count of the number of times I’ve found myself saying, “I wish I’d known that then, when mum was alive”.  Indeed, the main objective of all that I write and say about dementia is to share my newfound knowledge so that other families going through what mine did, are better informed.

So when it came to choosing a theme for my new weekly podcast series, which you can listen to by clicking on the arrow above, was simple.  I’d ask each guest to tell me the three things that their dementia experience – whether as someone living with it, a relative, carer or professional – has taught them.  To say what they know now that they didn’t before – about the condition itself, about themselves, about life, about anything and everything.

In these unsettling times, with dementia the main underlying condition of Covid-19 deaths (accounting for one in five of coronavirus-related fatalities),  I want this series to spread some light.  I know that may seem a tough ask.  But this podcast is – I promise – uplifting and informative, humorous even, offering listeners the chance to hear some comforting, friendly voices.    It’s my first attempt at hosting pods so please excuse any rookie mistakes, but I know that my wonderful guests will more than make up for my lapses.

Next up: what to call the podcast?  I’m an English graduate, and I love a female author.  So I turned to my all time favourite, Jane Austen.  Elegantly waspish, surely she’d have something to say?  But no.  I couldn’t find any pertinent pearls in her Regency drawing rooms.  Iris Murdoch?  The genius who herself succumbed to dementia must have a quote for me. Sadly not.  And then I stumbled across an utter gem from, of all people, Sylvia Plath.

The American, who took her own life so tragically young, isn’t someone whose work I know well.  But tucked away in her early journals, written when she’d just started at Smith College, Massachusetts, is a description of a snowfall.  It is, she says, like any other snow, but from a different window, a different perspective, “and there lies the singular charm of it”.

She writes of “scatter-brained flakes” circling down in aimless swoops and spins, and though she has a Botany exam in two hours declares that she “must stop a little, and look”, which she does, beautifully detailing what she sees.  She is living in the moment.  Which, as so many of those with dementia tell me, is a rare upside of their condition, as profound as it is surprising.

“Well I know now,” Plath records in 1950.  “I know a little more about how a simple thing like a snowfall can mean to a person”.

I’d found my title.

I hope you like it.  I have to say it’s proved a very rich seam.  There is so much knowledge out there, if only everyone who needs it right now knew how and where to tap into it.  Which is where my podcast comes in.

Every one of my guests has stories to tell that will either resonate with listeners or  inform them, reassuring those who have recently been diagnosed with dementia  – and, importantly, their loved ones – that they are not alone, that there is life, albeit a different life, after diagnosis.

In the first episode Nula Suchet recounts the devastating shock of discovering that her husband has developed Pick’s disease at 57. She talks of her numb disbelief transmuting into a fierce determination to hold onto the man she loves for as long as she can in all the ways that she can.  She is a compelling, passionate speaker and a warm, generous woman with much to give and many valuable insights to share.

Precisely because of her husband’s dementia, Nula meets the broadcaster John Suchet, whose wife Bonnie also has Alzheimer’s disease and in time, after both their spouses have passed away, John and Nula marry.  So her story, while very moving, ends – surprisingly and joyously – with hope.

Second in the series is a couple some of you may know.  I thought I did, but I was bowled away by Chris Roberts’ selfless wisdom and foresight, and deeply touched at his wife Jayne’s love for him.   Chris, for anyone who doesn’t know, was diagnosed with vascular dementia and Alzheimer’s disease a decade ago when he was just 50.

You’d be hard-pressed to tell this from the podcast.  This is of course largely down to Chris and no doubt he was tired at the end of our lengthy chat. It is also because Jayne subtly, with an ever so gentle touch, looks out for him.

It is also down to my fantastic sound engineer Gareth.  I had recorded three face to face interviews when coronavirus forced us into lockdown.  My Iphone was no longer going to cut it.  If I wanted to persevere with the series I needed something altogether more technical, complicated and, let’s be honest, totally beyond me.

By phone, Gareth talked me through the online purchase, installation and mastering of a nifty piece of kit that enables me to record guests down the line from their homes.  Because of his dementia Chris, fluent and clever as he is, often forgot to speak into his mobile and at times I could barely hear him.  But Gareth’s expertise produced the final, high quality version that you will all hear.

Next up …. but no, I must maintain an element of suspense.  Needless to say, I have some cracking guests – from carers and relatives who have turned their experiences into enterprises and charities to authors and professionals, all with an interest in dementia.

I hope you enjoy listening to the series as much as I’ve enjoyed recording it.  And if you do, please rate, review and subscribe on whichever platform you’re using to help spread the word, thereby reducing the stigma and increasing the knowledge around dementia.   As well as listening through my blog, the podcast is also available on Apple ITunes, Acast, and Spotify (where, for the moment, you have to search Pippa Kelly).   Finally, and very cheekily, if you do listen and you rate it, could you rate it (see what I did there?) and subscribe.   Thanks.

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Reframing Dementia

83-year-old Shiwa Sawano grew up on a farm & loves to work outdoors; Photo Robin Hammond

I came across Robin Hammond’s photographs on Instagram.   It was the extraordinary, earthy beauty of the portraits that first drew me to them.  Every face captured in his lens is old.  And you know, even as you take in the wisdom of their eyes or the dignified curve of their nose, that everyone has a story to tell.

Each person, it turns out, has dementia.  Swipe right and you discover an object that means something to them: a saw, a book of poems, an agricultural implement.   Beside every portrait is a short commentary on the individual’s life, his or her story.

Take 83-year-old Shiwa Sawano (left).  She lives in a group home on Japan’s northernmost island of Hokkaido.  When she first arrived she used a stick to walk and hardly ever smiled.  But now she laughs, smiles and keeps herself busy.

“I am happiest when I’m working in the field,” she says.  “Because I grew up in a farm. Work is fun.  I like to work”.

Some 36 people with dementia live in group homes in the Sapporo and Eniwa areas of Hokkaido.   Food and general care are provided, but residents are encouraged to maintain the routines of daily life, whether that be through gardening, preparing meals, food shopping or cleaning.  Some gain a sense of financial independence by selling vegetables that they have grown.

Fumiko Ito, 69, ran a restaurant with her husband for 30 years; Photo Robin Hammond

Fumiko Ito was just 19 when she met her future husband in a bar.  “He was sitting behind me and he pushed me from behind and said hi – I fell in love at first sight”.

The two of them ran a restaurant for 30 years and then, seven years ago, her husband died of cancer and Fumiko’s health declined.   However since she’s moved into the Eniwa group home for those with dementia her condition has improved; she says this is because she no longer feels lonely, she has friends around her and she has a role to play.   She prepares food, cleans house, sometimes take care of the other guests and is at her happiest when enjoying good food with friends.

The small, group care homes form part of Japan’s pioneering Orange dementia programme launched in 2015 to provide more specialists, improve early diagnosis and expand community-based care.

Japan, which has the oldest population in the world (36 million of its citizens are 65 or over), is living through its third era of dementia.  The first, the era of the cure, occurred in the 1980s, when those with the condition were placed in care homes and given medication.

The second, the era of care, came in the ‘90s, when people lived their lives supported by others.  Though laudable in its aims, the pioneering treatments of this era – music, reminiscence and art therapies – were foisted on care homes without any thought being given to what their residents might actually want.

Akiko Furuta, 82, was a rice farmer before she retired & lives in the group home with her husband; Photo Robin Hammond

The third phase is known as the era of reciprocity: people are regarded not as care givers and care receivers but as treasured partners.  In Japan today, 5 million people live with dementia.  Emphasis is placed on everyone sharing their lives, on those with and without dementia influencing and being influenced, inspiring and being inspired.  The approach is not one way or unilateral, but equal.

I discovered all this through Karin Diamond’s excellent Churchill Fellowship film report about her trip to Japan.  She mentions the small, group homes where staff ensure that they know the history of each individual resident by visiting places of significance to them in their earlier life.  Her accounts tell of the ebb and flow between residents and staff.

“Humanity is fostered in the warmth of interpersonal relationships,” she says.

Karin is the artistic director of Re-Live, an award-winning charity based in Cardiff that provides an inspirational programme of life story theatre work and training courses for those with, and involved with, dementia, for veterans with post-traumatic stress and people with terminal illnesses.   One of its missions is to “Create theatre that challenges stigma and changes the way we see each other”.

Which brings me back to Robin.  The 45-year-old describes himself as a photo-journalist and storyteller.    For a decade he has focussed on mental health, disabilities and human rights, always trying to connect to the issue through the person, to gain what he calls a “person-centred understanding”.  Take a look at his website or his Instagram account to see some of his projects and more of his incredible photographs.

When the Guardian commissioned him to provide images for a story on dementia he travelled to Japan and admits that initially he saw the condition rather than the person.

“But through their conversations I started to see the people.  I realised that they had rich histories just like you and me”.

81-year-old Yoko Mikio used to maintain Japanese rail tracks & wrote poetry all his life; Photo Robin Hammond

Throughout his life 81-year-old Yoko Mikio wrote poetry but then his dementia made it too difficult.  “There is a small forest blooming in front of me,” reads one of his poems, “as one of the ways my youthfulness is soothed”.  His wife Ryoko explains that when he was younger Mikio expressed his frustration with life through poetry, which comforted him.

Mikio still thinks he is at work maintaining the Japanese railways even though he retired 35 years ago.  Nowadays he always carries a book of poems in which one of his was published.

“When I see the forest and I see the trees moving by the wind I feel the energy of nature, then I feel I also have to do something other than just sitting here all day,” he says.

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Turtle Song

Sometimes when I sit down to write my blog I realise that words on a page simply won’t cut it.  People need to be there, see the magic, hear the joy.  So it is with Turtle Song, an initiative through which those living with dementia, their loved ones and carers, join forces with Royal College of Music graduates, professional musicians and music students to create a song cycle which they then perform live to family and friends.

The best way to understand the brilliance of this project is to watch it in action.  In the short, three minute film below you witness the stimulation, companionship, happiness and purposeful satisfaction that creating and singing songs over the course of ten weeks brings to all those involved in the group.  To quote the song being sung, “We are finding our voice”.

You see Philip, arm protectively around his wife Jenny, who was diagnosed with dementia five years ago.  Their favourite song of the cycle is “Touch”.  “It means so much,” says Philip, with just a hint of a crack in his voice.

In another clip from a BBC documentary (below) Philip reminds Jenny that one of the songs the group has written recalls the day they bought her engagement ring.  As he says this Jenny laughs, and the love of this tall, bespectacled man for his petite, blonde wife is given away by the look on his face.  Not the first giddy rush of emotion, but the deep, enduring love of a married couple who have weathered the vagaries of life so far and intend to go on doing so, dementia or not.

“Just talking about it on the way here in the car I get the smiles,” says Philip. And Jenny smiles again.  There is something positive, joyful and life-affirming about a couple singing together when one of them has dementia.

For Maggie Kavanagh, whose husband Peter was diagnosed with frontal young temporal dementia three years ago when he was just 58, joining the Oxfordshire Turtle Song group has meant still feeling part of the human race.

“In the difficult times it has been like a beacon on a light house,” she tells me from lockdown in Bicester.

Seeing Peter being so willing to join in with the singing and dancing – he never danced before his dementia – and being immediately accepted without judgement, makes Maggie happy.  She enjoys the warm-ups, the vocal exercises and watching other carers and people with dementia having fun.

Turtle Song is just one strand of Turtle Key Arts, a ground-breaking production company with a mission to ensure access to the arts.  For all.  That means people with disabilities, people who are disadvantaged or socially excluded, those with autism or dyslexia, and those with dementia.  Participation lies at the heart of everything they do, as does collaboration with various partners, including the prestigious English Touring Opera and the Royal College of Music, as well as the Amici Dance Company, who integrate disabled and non-disabled performers in their productions, and Ockham’s Razor, an aerial theatre company.

Turtle Key Song was founded by Alison King, whose mother was diagnosed with dementia in her early 60s.  When Alison took her to a day centre she discovered that the average age was 85 – her mum simply didn’t fit in.   So Alison set about opening up arts opportunities to improve the quality of life for those who are side-lined, ignored or stuck at home.

Now in its 12th year, there are 28 Turtle Song projects running in various parts of the country and, until Covid struck, the group in Oxford were holding their weekly sessions in collaboration with English Touring Opera, the Royal College of Music, Oxford University students and YoungDementia UK.  Undaunted by the lockdown, they continued to meet up each week via Zoom and recently came together online to give their final performance for family and friends, which you can watch here.

Will Prior, an Oxford university music student working on the project, says that although the final Zoom rehearsal session was very different from meeting in person, it was bizarrely heart-warming.

“There’s something rather special about seeing a group of people you’ve been getting to know for the past three months dancing round their living rooms without a care in the world, whilst belting out songs that you wrote together”.

Now, in a welcome positive twist, Turtle Key Arts’ artistic director Charlotte Cunningham sees a new online legacy for the project.  With Turtle Songs due to run in Reading, Manchester, Bishop Auckland and London between now and next spring there is potential for virtual Turtle Song sessions in which participants from past projects could join in regularly online to sing their own songs or those created by other groups.

“The Oxford experiment has shown us that with good planning and support from our end, it is a real possibility,” says Charlotte.

Anyone who knows me won’t need reminding of my belief that the BBC could – and should, given its public service remit – provide a weekly radio singing programme to bring people, particularly those who are isolated and those with dementia, together.   Not just during this current crisis, but in perpetuity.

But as this hasn’t happened – yet – it is good to see that, truly terrible as the coronavirus pandemic is, it is proving that the virtual world can bring together people who would otherwise never be able to meet so that they can sing, socialise and have fun.  Perhaps there is a glimmer of light at the end of the lockdown tunnel for those with dementia and their families and carers – and others too.

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Love in the time of Covid-19. A daughter’s story.

A recent tweet brought the world up to date with what’s been going on in @suzysopenheart’s world.  It is typically outward looking and, as the twitter handle suggests, open hearted, yet with hints of the gritty realities involved when caring for someone you love in these troubled coronavirus times.

At 8pm my new care shift helping Mum to bed will have just finished. I will definitely be joining in #clapforourcarers #clapforNHS but also thinking about family carers who are having to cope often alone & with no support, PPE or training. #WeAreInThisTogether” 👏 👏 👏

Suzy Webster (aka @suzyopenheart) cares for her 73-year-old mum who has dementia and recently took the decision to reduce her mum’s domiciliary carers, and thus her risk of contracting Covid-19, by taking on the evening shift herself.

Suzy, her husband Andrew and their two young daughters aged 11 and 14 also share their house with Suzy’s parents.  For a glimpse into their world a year ago, take just a couple of minutes to watch this little film of Suzy and her mum.  It’s guaranteed to lift your spirits.

It was first suggested in 2012 that Suzy’s parents should move from Somerset to come and live with them and their two daughters Elsie and Anna, then aged six and three, in Chepstow.

Suzy’s dad Gordon wasn’t sure.  “You’ve got your own family Suzy,” he said.  “You are my family,” his daughter replied.  This straightforward approach, based on profound love, governs the 43-year-old’s actions.  She and Andrew found a house divided in two so that her parents could live with them while remaining as independent as possible and they could all, in Suzy’s words, embark on the “dementia adventure” together.

Suzy’s best friend questioned her decision.  “This is for the rest of their lives – are you sure, Suzy?”  Having worked in the care sector since the age of 16, Suzy (who now has roles with Age Cymru and My Home Life, which promotes quality of life in care homes) was quite sure.  An only child, she was well aware that no army of carers would come riding over the hill to help her elderly parents, and that her dad would be placed under such massive stress that they could easily lose him first.

“The only way that we could get through this was if we all moved in together,” she says.  “Their move here was an attempt to save us all.”

Suzy Webster’s parents, Barbara & Gordon, a few years ago

In the early years of living together they made quite a team and there were, says Suzy, many positives.  Her mum Barbara, who has two types of dementia – Alzheimer’s and a rarer form linked to her hydrocephalus (fluid on the brain) – was still walking and could play with the girls.  Gordon was active, and the pair of them often babysat for Suzy and Andrew.  The children got to know their grandparents very well and both girls are now, according to their mum, incredible carers.

But, inevitably, Barbara’s health deteriorated until she needed a wheelchair and hoist. No longer able to cope alone, several months ago Suzy hired carers from a local family-run agency.

Six carers attend in pairs three times a day to help Barbara get up in the morning; they pop in again at 4.30pm and assist her to bed at 7.30pm.  Unfortunately, although the agency try their best, there is very little continuity of carers.  In Suzy’s words, streams of strangers come in and out of the house every day – this can amount to as many as 20 different people a week and wasn’t something that Suzy had envisaged.

“It’s simply what we’re dealt,” she says with characteristic stoicism, adding that one benefit is that her dad loves company and chats to them all.

Then, a month or so ago, coronavirus struck the UK.  The day centre to which Gordon took his wife every week, shut up shop.  The Singing for Fun group Suzy set up was forced to close, her daughters could no longer attend school.  With two people over 70 in the household, the family needed to self-isolate, but Barbara needed carers.  What to do?  It is a dilemma facing thousands of families.

Suzy’s immediate reaction was to take over all of her mum’s care herself.  However Andrew, a hospice chaplain but most of all a caring husband, understood the emotional, mental and physical impact this would have on his wife. So instead he suggested initially dropping just one of the carers’ visits.

They now come twice daily, with Suzy and a carer carrying out the evening routine, which is the easiest because it involves only one movement from chair to bed.  Suzy helps her mum wash and change into her nightdress, apply her Nivea face cream and brush her teeth, and then puts her to bed.

“It is a bit like I used to do with the children.  I watch mum close her eyes and relax into the sleep that she needs”.

Suzy knows that her dad isn’t up to caring for her mum, either physically or emotionally.  So, as she said in her upbeat tweet, she puts on her latex gloves, meets the carer at the door and “goes on shift.”  Once again, behind the stoic face is the poignant role reversal that occurs when child becomes carer to parent.

It’s also worth noting that Monmouthshire county council noticed Suzy’s tweet and said that they would drop off personal protective equipment should Barbara show any symptoms of the coronavirus.

Suzy knows that her mum could die during the pandemic.  There was no choice but to retain some carers which means, by definition, people (sometimes strangers) entering their home every day. All Suzy can do is to ensure, when they visit, that strict precautions are taken with masks, gloves and stringent hygiene checks.

“I can’t protect mum any more than that.  Perhaps it is her time.  Coronavirus has brought lots of things to the surface emotionally and physically.  Day to day I haven’t got time to think, but I’m watching mum grow down just as you watch a child grow up.

“I sometimes look at mum and think, we’ve lost you a little bit more today”.

You may have done Suzy.  In fact, this being dementia, you almost certainly have.  But you, just like all the other family carers out there, are providing the most important things in life:  you’re giving your mum a family, a home and selfless, unconditional love.

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Singing Together (part 2). No Ifs No Buts. For All Of Us.

Amidst the worry and fear of the COVID-19 outbreak something wonderful is happening.  We’re Singing Together.

When Gareth Malone’s Great British Home Chorus launched online this week – 15,000 of us from around the globe joined in live and a whopping 86,000 watched the show afterwards.

Musician James Sills beat Gareth to it when he introduced the Sofa Singers last Friday as a response to self-isolation. Within ten minutes all 500 places on his online weekly sessions were taken.   His mission: to bring people together from around the world to “spark joy and human connection”.

You only need look at this BBC news clip on YouTube to see the joy sofa singing brings to so many people feeling discombobulated, isolated and frightened by the new situation in which they suddenly find themselves.  “I beamed from ear to ear,” says one sofa singer. “It  was a thing of beauty – it really was heart opening”, adds another. 

This is all brilliant.  But let’s not forget that there are people for whom discombobulation and isolation are often the norm: those with dementia and their family carers.  For whom singing could enhance their quality of life.

Yet the sad fact is that a significant percentage of care homes – 70pc of whose residents have dementia – don’t have the WiFi needed to log on to these virtual choirs.

Last summer a survey by revealed that 16pc of staff don’t even know if their care home has WiFi.  Of those homes that do, the service is mixed, with 18pc saying WiFi is only available in communal areas and 45pc saying access is available in both bedrooms and communal areas.  Even if older people living in their own homes have WiFi access , many of them cannot use it or find it confusing or frightening.

Which is why two years ago I campaigned for the BBC to reintroduce its weekly children’s radio programme Singing Together, this time for older people and those with dementia.   The operative word in that last sentence is “radio”.  No WiFi needed, just a good old-fashioned wireless.

The original Singing Together programme was introduced in September 1939 – long before the internet even existed – to bring together schoolchildren evacuated at the outbreak of war.  It ran on the BBC until 1999 – I remember it from my schooldays in the ’70s.

Every Monday at 11am my classmates and I would follow the lead of its presenter William Appleby to sing One Man Went To Mow and Linden Lea, aware that all over the country children just like us were singing the same song at the same time.   I’m pretty much tone deaf but the very act of singing together still gave me a lovely warm glow.

The idea for the corporation to reintroduce the programme wasn’t mine but that of internationally renowned soprano Lesley Garrett .  Miss Garrett made her suggestion at the launch of a report by the Commission on Dementia and Music that proved, beyond doubt, that listening and singing songs enhances the mood, speech, behavioural and psychological symptoms of those with dementia.  The report also revealed, shockingly, that good quality music therapies are available in only five per cent of care homes.

Despite the brilliance of Miss Garrett’s idea, I am afraid it fell on deaf ears.  My letter to the BBC’s Director General signed by key figures in the dementia sector, elicited a polite no.  Lord Hall cited dementia initiatives (such as its free sonic archive of over 16,000 nostalgic clips) to which the corporation is already committed.

But these downloadable noises are nothing compared to the life-enriching benefits that a regular weekly sing-song to the radio would offer those with dementia and their hard-pressed families and carers – as I said in an article I wrote for the Daily Telegraph.

My point was well made – by the BBC itself – when last year it aired Our Dementia Choir, a two-part documentary hosted by Line of Duty’s Vicky McClure demonstrating how singing literally changes lives.  The wife of 67-year-old Chris, who has frontal temporal dementia, said,

“What you’ve given Chris is unbelievable”.

The Coronavirus crisis has brought out the best in the BBC at a time when its funding, structure and national role are under threat.  It is fulfilling its public service remit and coming into its own.

The health and well-being benefits, the popularity and sheer joy to be found in coming together and singing together, particularly in adversity, are there for all to see in Gareth Malone’s Home Chorus – or the Home Malone choir, as he (and I) prefer to call it – and James Sills’ Sofa Singers.

“Join us!” declares the Sofa Singers’ home page.

“Because life is better when we’re singing together”.

For no one is this more true than older, isolated people, those with dementia and their families – many of whom don’t have access to the internet.  The genius of Miss Garrett’s idea lies in its inclusivity and simplicity.  Forget URLs, service providers, superfast fibre (I prefer Bran Flakes), portals and networks – and simply press a button on your radio.  Grandpa in Nottingham can tune in at the same time as his daughter and her family in deepest Devon – to listen and sing.   

There has never been a better time for the nation’s favourite Auntie to ensure her place in our hearts, help to secure her future and brighten all our lives by reintroducing Singing Together.  On the radio.


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Dear Life

An elderly man appears on a hospital’s A & E list one Friday night.   Michael Richardson’s pacemaker has literally exploded out of his chest and he is now cradling it gingerly in his hands, “slithering in blood and pus”.

Dr Rachel Clarke’s first instinct is to shove the thing back inside.  Her second thought is why on earth didn’t this man, who is in his late 80s, seek help earlier instead of waiting until his infection had spread, festered and finally blown up.  The answer, as she so eloquently describes in her book Dear Life, is that “something meant more to Michael than his own heart – that of his wife of fifty years”.  For Mary, it seems, has dementia and Michael is her sole carer.  If he went into hospital, who would care for Mary?

Busy as she is, Dr Clarke sits beside the distraught Michael, listens to his story and coaxes him to tell her about when he first met the vivacious young woman who loved dancing and whisky.  Despite Rachel’s efforts to comfort him nothing can take away Michael’s pain at the thought of his wife being whisked away by social services to an emergency care home where she will almost certainly have to remain, confused and frightened.

For Rachel, however, one incontrovertible fact stands out amidst this pain: today she’s met a man who so loves his wife that he’s prepared to sacrifice his heart for her.

“In the end, when death bears down, there is always this, the love of others.  Greater than nowness, greater than nature, greater than moments of sensory pleasure: the power of human connection”.

A specialist in palliative medicine, Dr Clarke delivers profound messages through simple stories.  Her book opens with dramatist Dennis Potter’s famous description, during a 1994 television interview, of the “whitest, frothiest, blossomest blossom that there ever could be.”  Two months later Potter was dead.  But, as Clarke says, his extraordinary interview with Melvyn Bragg filled viewers’ minds with the sheer theatricality not of dying but of living.

“Death’s imminence, its claim on his future, had given Potter licence to live like a child in the present.  Every second sang”.

Every page of Clarke’s book swoops and soars with humanity.  It is at once a gloriously worked text in the field of palliative medicine and dying, and a love letter to life – embossed, imbued, infused with care.

In it, Clarke reveals her sensitivity and her innate understanding of the healing potential of things other than medical skill.  But, as a doctor , she also knows how quickly her profession can become inured to, detached from, the people they seek to heal – even as they fight to preserve their instinct for kindness.

“I saw doctors and nurses who had barricaded themselves away from the human beings they tended, becoming hardened and withdrawn, simply to survive”.

Yet amidst all this love and loss, Dr Clarke herself never loses compassion.

“Above all, when your focus is people, not body parts, taking time to listen to your patients’ words – seeking truly to understand what matters to them – can have astonishing potency”.

It is all so obvious, really. The title of my very first blog was “People not body parts”, a phrase borrowed from the then Health Secretary Jeremy Hunt.  It was 2014 and Mr Hunt was announcing changes to ensure that an NHS patient was seen as “a person with a name and a family” rather than “a part of the body where things have gone wrong”.  Incredible really that such an announcement was needed.  And have his words been heeded?   I wonder.

Two years later, in 2016, I gave a speech at the NHS Confederation entitled “At the heart of all care is the person”.  I apologised for making what might seem to be a statement of the bleeding obvious, explaining that in the case of my father’s treatment by the NHS, the obvious – the person at the heart of the care – had all too often been forgotten as protocols and systems took centre stage.

Kate Granger, painted by Antonia Rolls for the A Graceful Death exhibition.

Like Dr Clarke, the late, great Kate Granger was a doctor (a consultant in geriatric medicine) who understood the power of small acts of kindness – of human connection.  The knowledge underpinned her “Hello my name is” campaign, encouraging and reminding all healthcare professionals to introduce themselves to their patients.

Dr Granger’s inspiration came when she developed cancer and found herself on the receiving end of NHS care.  During one emergency hospital admission she lay on a trolley in severe pain as various medical professionals approached her.  Not one of them introduced themselves or interacted with her; she said she felt like one of the mannequin arms on which trainee doctors practice their skills.

It was only when Kate met Brian, a porter, that her faith was somewhat restored – he introduced himself and was the first to recognise her pain, wheeling her trolley with extra care.  During the three weeks that Kate remained in hospital, the majority of healthcare professionals failed to introduce themselves.

Behind the simple message of “Hello, my name is” lies a profound truth: that patients are people, that through the small act of sharing names you can bring about a powerful mind change.

Dr Granger knew that scientific medical skill, as all of us involved with dementia know only too well, is only part of the healing, caring process.  Dr Clarke also understands this.  As she writes,

“The spoken word, I had come to realise, could be as delicate and important as any physical intervention, and sometimes equally life-changing”.

These two inspirational doctors remind us all of the importance of kindness, the power of communication, and the absolute necessity of human connection, without which we are – to paraphrase a former Health Secretary, reduced to body parts not people.

Dear Life, published by Little, Brown, is available at book shops and Amazon. 

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The Two Faces of Twitter – a heartwarming Christmas story

My husband, who’s been involved with politics one way or another for over 30 years, looked at his Twitter feed a few days before the general election and said he’d never known such a vitriolic campaign. I wearily agreed.  It’s been an unedifying sight watching politicians and others slugging it out on social media.

In the wake of the Conservative’s win last week, the Mail on Sunday ran a double page spread under the headline, “Toxic Twitter”, claiming it fueled political extremism and debased debate.  Given the 240-character limit of each tweet, this may well be true – pithy one liners hardly make for nuanced arguments.  But fear not, I have no intention of going into the politics of Twitter here.

Instead, in this season of goodwill I bring you unlikely tidings of online comfort and joy.  For Twitter has two very different faces.

Two days before the Mail’s characteristically provocative piece an old pal of mine direct tweeted me (along with three dementia organisations):

“Anyone have any ideas for family Christmas games we might be able to play that can involve and include my father, who has Alzheimer’s disease, please?”

Within minutes the good folk of Twitter – yes, there are lots – came alive with suggestions for my friend Neville, aka @PompeyNev.

“Sitting, hugging, holding, talking, listening. Try throwing a balloon or something very simple. Games aren’t important and can create a great deal of anxiety and insecurity. Just include them in everything and don’t treat them differently,” tweeted @bradboyqld.

Trish Dainton, aka @TDainton, wondered if my friend could look up record charts for when his father was about 20 years old.

“Type (large font) & laminate titles & artists of hits”, she tweeted. “Cut titles into 3 parts. Group/artists into 2. Jumble up the pieces (having kept note of answers) & see how many hits can be found? Take a turn then & play track via Youtube”.

What impressed me was the time and consideration that went into the myriad responses.  People really wanted to help – to share their experience and knowledge.  To make a difference.

@Mycarematters told us that Bradford Hospitals’ Charity has set up an Amazon wish list of games for those living with dementia in their care, which you can see here.  How fabulous is that.

This is the other face of Twitter, the beneficent one that’s not talked about much in the tabloids, who focus their laser-like gaze on how the platform allows bullies to hide behind their screens spouting hateful comments they’d never have the nerve to say to anyone in reality.  Don’t get me wrong, this certainly happens.

Just as it’s true that all social media serves, to use that hackneyed phrase, as an echo chamber.  We choose who to follow, so tend to see our own views reflected back to us in a never-ending hall of mirrors that reinforces our view that we are absolutely, definitely right and everyone else is blatantly wrong.  But one person’s echo chamber can be another’s community, as my pal’s tweet for dementia-friendly Christmas games so vividly illustrated.  The suggestions kept on coming, including this one from John Reed (@johnreedtutis).

“Name that tune would be good.  Suitable for all, you choose the music, make a play list and play one at a time.  Great fun as anyone, dementia or not, can play.  Small prize at end, plus bonus points for singing along.  A great memory jogger too”.

In one of my earliest blogs I described Twitter as a “fabulous global cocktail party” taking place on the Internet, introducing people who would otherwise never meet.  Friendly groups such as #AlzChat and #DiverseAlz gather in this virtual space for regular chats (Mondays and Thursdays at 8pm GMT and 3pm EDT to be precise – simply search for the hashtags and you can join in).

By coincidence the subject of the most recent #AlzChat was the importance of Twitter chats for those living with dementia and their carers.  The topic created a buzz and Tommy Dunne summed up just what the online meet-ups mean to him:

“#AlzChat When no one phones and I’m alone there’s a place that I can go to communicate with people I now know, a place where they will listen and will not judge”.

Tommy, aka @TommyTommytee18, lives with Alzheimer’s.

Researching a Guardian article a few years ago I interviewed the then 65-year-old wife of someone with dementia.  She told me she felt trapped by her husband’s condition, likening her situation to that of a mother with young children, but without contemporaries in the same boat.  Facebook and Twitter help carers to connect with others facing the same daily challenges.  She and I share posts on Facebook, we connect.  Occasionally we – whisper it softly – actually meet.  In person.

Social media has the power to reach the parts that others can’t.  Yes, it’s used to disseminate lies, breed hatred and fear – but to be honest it’s the individuals involved who do that, not the platform itself.

The negative, nasty face of Twitter is well publicised.  But let’s not forget its positive side.  Used well, it stimulates connectivity, forges friendships and is a joyous force for good.  I don’t know about you, but I’m very happy to raise a festive glass or three to that.  Real, ice-cold bubbly ones mind, not your frothy, virtual nonsense.


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The Longest Farewell

The Longest Farewell is a hard book to read.  It is also an important book with a profound and, against all the odds, ultimately hopeful message.

In it, Nula Suchet speaks the unspeakable: she rails against “the bastard dementia” that afflicted her late husband James Black aged 57, leading them both on what she calls “our journey to hell”.  The pages hum with anger, frustration and guilt – yet her tale ends with a magical twist that renews our belief in the power of humans to connect, even in adversity.

In telling their dementia story warts and all, Nula highlights the common themes that crop up so frequently when I speak to those affected by the condition, either directly or indirectly.  There’s the drawn out diagnosis; the impersonal manner of some medical professionals; the diminution of identity.

“Dementia is destroying everything.  My marriage, my dreams, my finances, even myself.  Everything is subsumed by the soul-crushing grind of being a carer to the empty shell that is now my darling James”.

It is raw, uncompromising language, riven with pain.

Even more chilling is her family’s reaction when she and James leave their home in Ireland to find residential care for him in England.   No one says goodbye.  Nula thinks this is because they don’t know what to do or say.  “It is as if he’s become a non-person.  If he had been diagnosed with cancer they would see him as a brave battler, but dementia frightens them”.   I’m sure she’s right.  Dementia used to frighten me, but it no longer does because I have a much better understanding of what it is.

Nula’s love for James sustains her, just – and music is one of the last things she refuses to give up on for her opera-loving husband, who’d been a highly successful television director and writer.  In the early stages of dementia he wept when she played him CDs of Tosca and La Bohème – responding viscerally to one of the greatest joys of his life.

When she takes James to live in a care home she puts on The Marriage of Figaro, his favourite Mozart opera, and immediately he stands up and starts conducting the music, a huge smile on his face.

“I can’t breathe.  I move to wrap my arms around his body and hold him tight so he can’t see me cry.  I want to run out of the room with him and take him far away from the world of care homes and dementia”.

This poignant incident will resonate with anyone who’s had to place a loved one in care.  When my mother was dying of dementia, I witnessed the incredible power of music to connect (and wrote about it here) and am now passionate about spreading the message.  I’m still pursuing my campaign to persuade the BBC to bring back their old radio programme Singing Together, originally aimed at children, this time for older people and those with dementia (see here).

When James’ worsening condition forces her, with reluctance and guilt, to place him in a care home she meets a man who knows just what she’s going through because he is too.  It is the broadcaster John Suchet, whose wife Bonnie has Alzheimer’s, and their shared experience brings them together in “the strangest dance of love and care” which ultimately, following James’ and Bonnie’s deaths, leads to John and Nula marrying.

Nula Suchet

Love, then, squares up to dementia.  It can’t prevent James or Bonnie from suffering or dying, but neither can it be destroyed.  Nula lays bare the devastating impact of James’ Pick’s disease (a rare form of dementia affecting behaviour, emotional control and ability to communicate) not just on him, but on her.

The resulting book is one of coruscating honesty that is well worth a read – but not, I would counsel, if you or a loved one are in the throes of what its author describes as “soul-destroying and utterly frightening years”.  Wait until your personal encounter with the UK’s most feared condition is over.

Occasional moments of magic temporarily ease the pain.  The house is suffused with the scent of sweet peas that James has grown and placed in every room, and when Nula goes to her car she finds little bunches of the flowers on the driver’s seat and dashboard.  “It’s his only way of telling me he loves me,” she says, and you hear her heart breaking.

It is in the care home that Nula meets first Bonnie, with her “strange and ethereal beauty” and then her husband John Suchet, to whom she feels “an instant connection.”  As their friendship develops into something more it is inevitably hard for them both.  Nula is a wife visiting a husband she adores but to whom she hasn’t been able to connect for years; she’s also establishing a relationship with another man.

John Suchet, incidentally, is as convinced of the power of music to enhance the lives of those with dementia as I am.

“Music is medicine to those with dementia, able to bring comfort and joy when nothing else can,” he told me.  “Bonnie smiled and tapped her feet along to Abba when words no longer held any meaning”.

The book never leaves you in any doubt about Nula’s love for James, or John’s for Bonnie.  And towards the end, battered by their experiences, their spouses’ suffering finally over, their burgeoning love almost destroyed by the bastard dementia, Nula and John come together and find peace.

When John Suchet’s book on Mozart is published he dedicates it to the memory of “Mozart lover James Black”.   While Nula ends her work with words of hope. After a decade of flat hopelessness, her creative energy rises again like sap.

“I’ve changed as a person.  The loss of James has made me see life in a different way.  I’m a bigger, better person because of it.  My life now, once again, is about love”.

It is a life-affirming end to an immensely sad and painful story.

The Longest Farewell, published by Seren Books, is available from & Amazon

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Thanks For The Music – why dementia is a team game

An envelope arrived in the post the other day from Southampton university.  In it was a map – a Map of the Tracks.  Intrigued, I unfolded the purple and pink paper to be met by names and places that swept me back to my uni days.

There they all were: Swaythling, Burgess Road (it had a good bakery that sold a mean iced bun), Bitterne Park, The Avenue.  I had a sudden, painful recollection of cycling up Portswood Road, battling against icy winds to get to my Monday morning lecture on Paradise Lost.

More enticing were the questions posed beside these evocative locations.  “What memories do you have?  Do you think of a particular time and place? Is it the union back in the ‘60s?”  Er, not quite – I was still in short socks then.

But imagine my delight at seeing these words: “What about the music of the time?  We want to know which track takes you back every time you hear it”.

Excellent!  And easy too.  Joni Mitchell’s Big Yellow Taxi skids to a halt and I’m in my dingy little room in Montefiore Hall – a large, rundown place in which a handful of other girls and I occupied the only female floor.

Needless to say, I soon found myself a boyfriend.  Jon played Pink Floyd’s Another Brick in the Wall on a non-stop loop as he made endless cheese toasties in a special machine, the likes of which you never see now.  Ian Drury and the Blockheads played at the Gaumont.  I saved up to see them: Ian – and his rhythm stick – were fab-u-lous.

How quickly music summons up your past, as all of us involved in the dementia sector know only too well.

Another Ian – Big Ian Donaghy, care trainer, musician, author, speaker – popped up on my Twitter feed last week asking similar questions to my old alma mater.  “What songs take you to a point in your life and break your heart?”

My answer was swift:

Once in Royal David’s City: mum & I listened to the Nine Lessons & Carols from King’s College on Xmas Eve, day before she died. She had v severe #dementia by then & mainly slept but when she heard it she opened her eyes. Can’t hear it without my heart crumpling”. 

Plenty of other tweeps joined in with their thoughts. 

The Big Man was seeking songs for a choir to sing at the Care Show in Birmingham, where he was a keynote speaker.  This wasn’t an official choir, a Singing for the Brain choir or a community choir, but one that Ian created by dashing around the conference asking anyone and everyone if they’d like to join in his session at ten past two.

Such is the forceful passion of the man that 200 people – care staff, managers, owners, influencers, singers and non-singers, the tuneful and the tone deaf – joined him and his guitar to belt out songs.  Ian’s mantra is “Dementia Is A Team Game” and he’s nothing if not inclusive.  It lies at the heart of all that he does.

Big Ian knows only too well the power of music to connect to those with even severe dementia.   When his mother-in-law Liz died a few months ago aged 66 she’d been living with dementia for several years.  Ian says that right up till the end, when everything else had been taken from her, Liz was still singing.  She had created a playlist with 200 songs, including John Denver’s Annie’s Song and Leaving on a Jet Plane (two of my favourites), which all her carers knew.

At 49, Liz chose all the music for her funeral.  This was very important: the family were able to respect her wishes because they knew what they were – so often loved ones are left guessing.   Whenever a song Liz liked came on the radio, she would say she wanted it at her funeral.  “I used to joke that her funeral would be like Live Aid with a box!” Ian tells me.

In the last year or so Big Ian has made several short, punchy films highlighting his love for music and his passion for bringing it to those with dementia.  One of the most moving involves yet another Ian.  In his mid 60s, he has progressive supranuclear palsy which means he can no longer communicate verbally.

Big Ian visited him at Landermeads care home in Nottingham and, hearing that his namesake used to enjoy Paul Young, decided to play his guitar and coax him to sing a duet.

“It was astonishing,” says Big Ian.  “He had the room in tears.  By the end he was leading the song – there were parts where he came in before me and then, at the end, when he sang ‘Every time you go away, you take a little part of me,’ he tugged at his shirt and motioned at me”.  I’ve watched it and warn you now: you may need a hanky.

Big Ian is right.  Dementia is a team game.  If we all join in it makes a difficult situation better.  At the beginning of the year I wrote a blog about togetherness which struck a cord with readers.  Musing on the way we humans invariably think in terms of “them and us” rather than “we” – those living with dementia versus us or those who are old versus us – I concluded that this division helped breed stigma.

Before my mum was diagnosed with dementia I knew very little about it – I metaphorically crossed the road to avoid it.  Once she developed the condition, my view of it altered irrevocably and very much for the better.

I wrote in my blog:

“She was my mum.  So, she happened to have dementia.  She was still my mum, with her big heart, her eccentric ways and her numerous faults.  At a stroke my attitude changed and any notion of dementia existing somewhere else, over there, in other people’s lives, evaporated.  We are all in this together”.

My words echo Big Ian’s philosophy.   The man’s a musician.  He’s also a showman with a massive heart.  He knows the power of music to break down barriers and connect – hence his impromptu choir.

As he tells me, “If we all join in no one feels uncomfortable.   If we’re all ridiculous, no one’s ridiculous.  It’s like if you and three mates start dancing, then it’s alright because somebody has broken the seal”.

Immediately I’m transported to the uni bar.  It’s a Friday night circa 1981 and I’m grooving round my rucksack of books to Kim Carnes’ Bette Davis Eyes.  Of course I am.   So is everybody else.  Aren’t they?  If they’re not, they should be.

My graduation from Southampton University in 1982, with mum & dad

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Only Connect

I’ve always had a soft spot for John Humphrys, who retired from R4’s Today programme this week after 32 years in the role.  Perhaps it’s because he’s a Welshman and I undertook my postgraduate journalistic training in Cardiff or it could be that, like him or not, he’s undoubtedly a persistent and skilled interviewer.  As many of those paying tribute to him said, in canine terms he’s more of a terrier than the Rottweiller label he’s so often given.

But I think what’s really endeared him to me in these last few years is to hear the hard man of the airwaves reveal sensitivity when interviewing people with dementia and their loved ones.  It’s always more moving when someone you don’t expect to have a soft side, shows it publicly.  Mr Humphrys did so at the end of his final Today programme, his voice cracking as he gave his thanks to the great British public for putting up with him for so long.  It was as unusual as it was moving to hear the great man struggling for words.

Earlier in the programme, the BBC’s director general Tony Hall also mentioned this unexpected, sensitive aspect of his colleague.  The DG wondered aloud if it was down to the haunting impact on Humphrys of the 1966 Aberfan disaster in which 116 children and 28 adults were killed when a colliery waste tip slid down the mountain side onto the village school.  It must have done: the young Humphrys was the first reporter on the scene and he’s subsequently said that throughout his decades of covering wars and disasters all over the world, Aberfan remains the worst.

Pam Schweitzer, founder of the European Reminiscence Network, in action at a Remembering Yesterday, Caring Today event

Of course the ups and downs of our lives make us who we are and shape our responses to different events.  We in the dementia sector are only too aware of this, hence our respect for the power of reminiscence work and music that has had a special place in someone’s life.

Listening to Lord Hall’s words about the retiring interviewer (I’ve just realised the wonderful irony in that phrase), I was reminded of an interview that Humphrys conducted with Denise Stevens, a woman caring for her husband with dementia.

The interview was unusual from the start.  Humphrys began by reflecting on his own father’s dementia and the way, towards the end, he had “turned his face to the wall” and died.  This personal note set the tone for a radio item that had the feel of a conversation between two people with a shared experience, on which we listeners were eavesdropping.

Throughout the piece Humphrys displayed nuanced understanding of the complexities of Denise’s life as someone caring for a loved one with dementia.  He said that of all the voices he’d heard on the subject hers was the most compelling, and that her experience gave her a moral authority.  The interview was five years ago; it moved me to such an extent that I blogged about it here

When dementia touches you personally it changes your attitude towards it.  I mentioned this in my essay on stigma in the latest Alzheimer’s Disease International report, launched yesterday (see p95 of the report).

Questioning whether the media’s role is a help or a hindrance when it comes to diminishing stigma, I argued that the dementia community and the press could benefit each other.  I said it was up to those in the dementia sector to provide the media with strong, human interest stories to inform the general public about the condition and thus help to diminish stigma (which springs from a toxic combination of silence, ignorance and fear).

“Once a condition such as dementia is given a human face, your attitude towards it changes.  Gone is the stigma and fear: mum may be behaving in an unusual way, she may be incontinent or unable to speak properly, but she’s my mum.”  I went on to explain that this phenomenon accounted for the power of celebrities in combatting stigma.  The public think, bizarrely, that they know them.

Which is just one of the reasons why John Humphrys’ interview with Denise Stevens, conducted as it was in front of 7 million listeners, was so important.

Earlier this week I spoke about the power of compelling human stories to bring about change at a health and care leadership event.  Anyone who knows me will be all too familiar with my love of stories (or rambling on, as some might put it).  Preparing for my talk, I thought about why the telling and retelling of human experiences resonates so much with other people and how we might most effectively use this connection to help deliver positive changes, whether in the health and care sectors, the dementia community, or broader society more generally.

We humans connect to each other through our emotions.  As I said to health and care leaders at Frimley leadership and improvement academy, the most common reaction to the talks I give about caring for my parents is, quite simply, thank you.  (My mum had dementia, my dad had a series of strokes that left him bedridden, immobile and being fed by a tube in his stomach).  I think I articulate, and reflect back to them, my audiences’ and readers’ own attitudes and responses to the difficult times they are, or have been, going through.

It’s my skills as a journalist, a communicator, that allow me to do this.   And in so doing I hope to bring about small changes in the way we all think about those with dementia and older people, and how we care for them as a society.

In my early blogs I often used to muse about “joining the dots” – by which I meant discovering people’s stories, making connections and writing them up.  This week, for me, has been all about links: from the BBC’s retiring, irascible, yet sensitive inquisitor and his deep, somewhat surprising empathy for Denise Stevens, to the audiences and readers who express gratitude to me simply because I’ve told them openly, truthfully (and hopefully fluently) about what my family and I went through.

We humans are a sociable, tribal breed.  We love sharing stories.  We love to connect.  All I do is to tap into this natural human desire and then ramble on about it.

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My Inspirations

Of course dementia is terrible – it’s cruel and so far incurable; it’s the condition that those over 55 fear most.  But as a campaigner and writer I feel lucky because the people I meet – those living with dementia, their families and carers, and others involved in the sector – are often so inspirational.   I am humbled by their resilience, their cleverness, their passion, determination and skill.  In my third vlog I pluck out just a few names from the scores upon scores I could mention (to those who don’t feature, huge apologies – but I hope I can interview some of you in future films).    Speaking of which, if there is someone or something – an organisation, charity, drama or enterprise – you think worthy of a vlog, do let me know. 

But for now, here are a few of my inspirations and below, as ever, is the transcript.   Once again, the best way to view the podcast is to click play and then click on the four small arrows bottom right to go to full screen. 


Hello, I’m Pippa Kelly and some of you may know me through my dementia blogs and articles.  In this series of podcasts I’m going to tell you a bit about what’s happening in the dementia world, and I’m going to focus on the very best practice and some of the inspirational people I’ve met along the way. I’m delighted to say that once again, I’m with my old friend Sue Saville, who has very kindly come along to talk to me about the inspirations, both people and organisations, I’ve met through my work.

Sue: It’s great to be with you again. Some people might think that your work with dementia, and writing about this condition, might be quite depressing, but you’ve not always found it so, have you?

Pippa: No, it can be depressing and I don’t like to try and sugarcoat the pill. You’ve got to be honest about what it is and it’s a really cruel and nasty condition, but I’m always very keen to emphasize that there is a life after dementia. It may be a different life and perhaps a limited life, but there is certainly life after a dementia diagnosis.  And the people I meet, who I’m going to talk about today, are people who, for me, show this really well in all sorts of different ways. I’ve broken down the people I’m going to talk about into three categories.

There could only be one choice for the first category and that is of course the people with dementia themselves, the people we’re here to talk about – they are everything that we are here for. The second category is that of people who are affected by dementia indirectly, so that might be a family, or carers – and I’m not only talking about what they do to support the person with dementia, but how sometimes those people will decide that they want to use their experience and do something to make life a bit better for other people with dementia and their families and carers going forward. And then the third category is a cohort of people who I’ve talked about before, and these are the little-known army of people called Admiral Nurses, who are specialist dementia nurses.

Sue: So what about those people, who’s inspired you?

Pippa: Actually, I should preface this whole podcast by giving my apologies to those people I don’t mention because it’s always a bit invidious to pick out certain characters. I have met several people with dementia – we all have of course – but through my writing (and I think perhaps because I am a writer myself) the one person I’m going to choose (and this might be slightly controversial because she’s been in the news already a lot recently) is Wendy Mitchell.

Wendy Mitchell was diagnosed with Alzheimer’s at the age of 58, a young age. Like so many people I meet with dementia she is doing everything she can to show others that there is a life after diagnosis, and she’s telling it as it is too. She has lots of attributes that I think are really important. She uses humour; she uses truth. She wrote a best-selling memoir – it is extraordinary that somebody with dementia is now a best-selling author! Who would have thought that? So, at a stroke, Wendy is diminishing the stigma that still clings to dementia. Stigma comes from people being frightened about something, and ignorant about something, and because they are frightened they don’t talk about it – so the ignorance remains, and then a vicious circle breeds, which leads to stigma. Just by being themselves and putting themselves out there, people like Wendy Mitchell, and so many others I could mention, reduce that stigma. That’s absolutely brilliant.

Sue: Does it in some way break down the fear that the rest of us might have – that there but for the grace of God go our loved ones or go ourselves? Does meeting someone like Wendy break down the fear of what can happen with dementia? She gives you a little light shining inside the reality?

Pippa: Oh absolutely. She gives you tremendous hope but, as I say, without being too “apple pie” about it – she’s very truthful. Her memoir is called Somebody I Used To Know, which is a very clever title. She talks you all the way through her journey with dementia – from the very first inklings that something is wrong (when she trips over a couple of times on her runs) to the practical steps she takes to be able to deal with it once she’s given up work. She describes what she did around the home – taking doors off cupboards, labeling things, using iPhones and iPads as really good reminders, and setting pingers and timers. So in all those very practical ways she provides support for other people.  She also reveals the extent to which her daughters were huge in her life and very helpful. This is often the way of course with family members.

But she also talks about two really important things. One is – as in the title of the book – that occasionally, not too much, but through the book, she has conversations with her younger, pre-dementia self, “somebody I used to know”. And that’s where you see that, for all that it takes away from you (she can no longer go for her runs, she can no longer work – it is a sort of succession of losses), at the same time it gives to you. For example, Wendy used to be a very, very busy person. She worked in the NHS all her life and had her two daughters; she did all sorts of things and lived life at full tilt, very fast – just like lots of us do – with no time to stop and think, and just dwell in the moment. Now that she finds herself with dementia, she talks about that. She says that now, “I stop. And I think. And I live in the moment”. We very rarely do that, and there’s something about that – there is something very positive about that.

And I relate to Wendy as a writer because what she decided to do fairly early on was to write a daily blog.  Now, I know because I’m a blogger (my blogs seem to get sparser and sparser!) that daily blogging takes a lot of effort. And of course because Wendy has dementia her blog has become her paper memory. She wrote her wonderful memoir with a journalist who, when I spoke to her (the journalist, Anna Wharton) she told me that without Wendy’s blog there was no way in the world that they could have written the memoir because, of course, Wendy wouldn’t remember.

So, for all those reasons, I chose Wendy. She’s a very articulate woman and she’s a very, very good writer. But also, in her book, she tells you about the the fear. She doesn’t shy away from that. There is one very strong passage describing how Wendy became so busy that she didn’t blog for two weeks. She has a way of sort of talking through her fingers. Even now, when her speech is a little slower than it was once, she has a wonderful way of talking through her fingers on the laptop. But because she hadn’t blogged for two weeks, when she went back to it, she had completely forgotten what to do. She sat there in front of her laptop and didn’t know what to do. Eventually, she typed something with her fingers and then she saw the envelope icon and a name she vaguely remembered – I think it was Sheila – and she sent an email. The friend who received it saw a lot of gobbledygook so she emailed Wendy back and said Wendy, this is gobbledygook. Wendy then emailed the friend back but what she wrote was still gobbledygook. So the friend had the foresight to tell Wendy to copy what she typed, which she did and then, slowly, the skill came back to Wendy, but she realized that she could never stop doing it again. And in that lies the seeds of what it’s like for everybody with dementia. Because it is such hard work. At one point Wendy says that you have a choice in a way: you can sit at home on your own and just let it all completely overwhelm you and give up, or you can get on with life. And okay, it’s going to be a different life and there is no cure, but you can still have a very full, rewarding life.

Sue: So it sounds like there are lessons to be learnt then from someone like Wendy that might apply to all of us – life lessons, mental health lessons involving routines, and things we can all do with regards to living in the moment.

Pippa: I think so – very much so. It is this way in which – especially with iPhones and things – we do seem to spend a lot of our life just not enjoying the time, the moment, as it is. Often we’re taking a photograph of the moment as it is, rather than actually living the moment as it is.

I think it’s also something to do with facing our own mortality. I remember once writing about a man who discovered he’d only got six months to live but said that in a weird way this was a sort of gift. It sounds odd to say that. But the knowledge made him stop and think. He’d been a very high level executive and he realised that he hadn’t had lunch with his wife for about seven years. And he just thought, hang on a minute, I now know that I have a finite period (which of course we all have, but in his case it was put in sharp contrast). So he decided that he was going to spend his time with his wife, his immediate family – the first inner circle – then the broader family, then the friends and colleagues, and so on. The moments that he cherished – I think he called them golden moments or precious moments – were very, very simple. They involved doing things like rowing across a lake or something, they weren’t dashing about and not living in the moment. I do hear that from quite a lot from people with dementia.

Sue: That’s an interesting point, that none of us gets out of this alive, this life.

Pippa: Yes, it’s finite.

Sue: And that, actually, perhaps we all need to be reminded of that sometimes, and that’s a very beneficial thing.

Pippa: Yes, and another person I did want to mention who lives with dementia, and who will be remembered, is a chap called Chris Roberts. Together with his wife Jayne (and I often talk about people with dementia and their family carers as being like two sides of one coin because they’re almost inextricably linked, and it can be really tough as well for family members) this couple allowed into their home, for a year, a Panorama crew (a cameraman) and that took immense courage. It really draws on your reserves to allow that to happen. There were several moments during the hour-long documentary when you just thought wow – imagine doing that! So, for example, Chris is a lovely person with a great sense of humour, he is very down-to-earth (very like Wendy actually) and when he was asked what he would advise other people to do in his situation he said, “Take life by the danglies and run with it”. It was by far the best quote of the programme. And that kind of sums up Chris – that’s brilliant.

But at the same time there were some really difficult moments to watch. For example, in the night, when Chris was railing against the disease that he has. And you saw Jayne his wife having to barricade the door so that Chris didn’t wander out in the night. Another really strong recollection I have of the programme is when Jayne and Chris go off in their camper-van. Their camper-van, a sort of Winebago, is great because the surroundings are familiar for Chris, which is very helpful, and the two of them tour all over the place in it, going to conferences and all sorts of things – they are both great ambassadors. Anyway, Jayne is asked by somebody off camera whether she’s thought about taking respite care for her or Chris and she says she has but she doesn’t want Chris to go into any sort of home or anywhere just for a week or something. I remember thinking that that was probably because Jayne thought Chris wouldn’t receive such good of care as she gave him at home, or something like that, which is what I commonly hear. But she didn’t say that; she said she didn’t want to do it because she was worried that if Chris went into respite care she wouldn’t want him to come back. She says this on national television.

Sue: That’s very honest.

Pippa: Yes, you’ve got to be truthful. And I think I’ve said this before to you Sue, if you’re going to do something like this, you’ve got to be honest otherwise there’s really no point. But I thought that was searingly honest and took a lot of courage on both their parts.

Sue: And then that brings us to the carers, fundamental really in the support of those with dementia. How important are they?

Pippa: The person I’m thinking of has become a friend of mine actually: she’s Zoe Harris. Her husband Geoff had dementia and she looked after him at home – they had two teenage daughters and it was all very difficult. Then, towards the end, Geoff went into a care home, and Zoe realized that the carers in the care home didn’t know Geoff’s preferences, his likes and dislikes. This was nothing to do with the medical side of his care; it was to do with small things which normally you would just tell somebody. But of course when you’re getting to that stage of dementia, you can’t communicate so well. So, for example, Geoff liked to have his tea black, without milk, but the carers kept changing and they didn’t know that and because Geoff couldn’t communicate, over one weekend he became so dehydrated that he literally couldn’t walk across the room. This was just because it wasn’t known that he took his tea black. It was so simple. And they didn’t know that he liked his chair up against a wall for some reason, otherwise he became agitated. Whatever it might be, they didn’t know these little foibles, or peccadilloes, or preferences, or tastes – how you like to live your life – people don’t know about these things. And so, at a very simple level, with her husband in the care home, Zoe put a chart on the wall with little facts about Geoff, and the care home thought that it was really useful. They asked Zoe if they could replicate the charts and then, before you knew it, Zoe decided to set up something called Care Charts UK, which were simple charts. Then that became an online version and the idea has grown into an organisation called MyCareMatters which involves creating an online profile of the person with dementia. I know that the latest thing Zoe is doing with her MyCareMatters is to enable people to do advanced care planning, moving towards the very end of life. Of course that is also extremely important for people and it really helps everyone, including the family, those who are left behind. It’s very good to plan the way you want to live your final time.

So, you can see that there are all sorts of people who have been affected by dementia – often through a family member – who then decide that they want to make things better.

Sue: And that’s fantastic, when people share best practice which then brings those benefits to the wider audience. And of course, there’s enormous benefit and support from professionals, and you’ve found out much more about this and done some work with some of these professionals who are absolutely central to the care of some of these people.

Pippa: Yes, absolutely. I haven’t worked with them but I’ve written about them. Often, when I ask people if they have heard of these specialist dementia nurses called Admiral Nurses they look at me and I realise that they haven’t and they don’t know that they’re out there and they can provide so much help – it’s unbelievable.

I wrote a piece about Admiral Nurses a while ago and all the families I interviewed – a good 10 or so families I interviewed in depth – told me that these nurses were Godsends, miracle-workers, lifesavers – but the sad fact was that for a long time there weren’t very many specialist dementia nurses (Admiral Nurses) in this country. To put that in context there are four-and-a-half thousand Macmillan nurses in this country, who have sort of the equivalent role in cancer care, and for a long time there were only about one hundred Admiral Nurses. That was for various reasons. 

The important thing about Admiral Nurses is that they focus a lot on the family of the person with dementia, not just on the individual with dementia, and they bring with them a variety of skills. They are really everything from navigators through the journey to really highly qualified nurses – it’s very important that they are nurses, they nearly always have some sort of psychiatric background and a geriatric background. And they are also counselors and advisors. They have so many different roles within what they do. This makes them quite expensive and I think this is partly why their numbers didn’t grow. But a few years ago, some really good evaluation was carried out on the role of Admiral Nurses and it was found that if a family has one of these nurses it reduces the number of acute hospital admissions, so in doing so they save the state money.

Sue: So the health economics kick in.

Pippa: They kick in and then of course, hey-ho, surprise surprise, suddenly their numbers are going up almost exponentially. Having stuck at around one hundred for about 26 years, within the last two or three years they’ve more than doubled – because now their value, not just in human terms, which this was always realised by those who use them, but in economic and financial terms, to the country, is being realised. One of the evaluations took place in Sutton and it was discovered that over the course of one year, one Admiral Nurse saved £300,000. As one council leader (I think it was Sutton Council) said, now that this is known, it is a no-brainer – it is helping at a human level and it saves us money: what not to like?

Sue: To hear about the value that those Admiral Nurses bring is fantastic, and to hear about all the people who inspire you too. But you must have other topics that you’d like to talk about in future podcasts?

Pippa: I have, absolutely, and I’d like to take this opportunity to say to everyone that I’ve done a few podcasts now, they’re out there, and I hope that you’ve enjoyed watching them.  Now I’d love to know what you’d like me to talk about going forward. So do put comments on social media or on my own blog and let me know what you’d like me to talk about and who you’d like me to talk to.

Sue: I look forward to those Pippa. Thank you so much.

Pippa: Thank you Sue.

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Music and Dementia

In my second vlog I share my passion for music and dementia with my childhood friend and distinguished broadcaster Sue Saville.   Join us as we chat about the final precious moments I shared with my mum, why music has such power to connect with people even when their dementia is very advanced and how wonderful organisations and projects are springing up to enhance the lives of those with the condition and their families through music.   I loved talking about this topic – and once again the video is best watched in full screen by clicking on the small four arrow icon, bottom right.   The full transcript is set out below. 

PIPPA: Hello, I’m Pippa Kelly. Some of you may know me through my dementia blogs and articles and in this series of podcasts I’d like to talk to you about what’s happening in the dementia world; I’m going to focus on very best practice and some of the inspirational individuals and organisations I meet along the way.

Today I’m really pleased because I’m going to be talking about one of my great passions: the power of music to connect with people in even the most advanced stages of dementia, and I’m delighted once again to introduce my friend Sue Saville, who’s here to talk to me today. Sue is a very old friend of mine – we’ve known each other for far too many years to mention. She’s also a very respected and distinguished journalist and broadcaster and was for many years ITN’s health correspondent.  So Sue, it’s over to you to ask me some questions about this, one of my really great passions, music and dementia. 

SUE: Well Pippa, it’s lovely to be here with you again and particularly to hear about this passion you have for music and dementia. I understand there’s a personal story behind that?

PIPPA: Yes. Absolutely.  And once again it relates to my mum, who lived with dementia for the last decade of her life. My mum died on Christmas Day a few years ago now and on the Christmas Eve, I received a call to say that she was very ill in her nursing home in Dorking and I should come down from London to see her.   It was Christmas Eve, I was really busy and to be perfectly honest, I nearly didn’t go.  Of course I did go and as I was driving down to Surrey I suddenly remembered that we could listen to the Service of Nine Lessons and Carols from King’s College, Cambridge together. This was probably one of my mum’s favourite things, ever. She loved Christmas.  I arrived in time and turned on the radio. 

Anyone who knows this service will know that it always starts with Once In Royal David’s City, with a lone chorister singing the first verse.   By then, my mum had, for about two months, been lying in bed, immobile, sleeping the whole time, with her eyes shut.  But as the first notes of Once In Royal David’s City came onto the radio she opened her eyes. That’s all she did. She just looked at the white, painted ceiling of her nursing home room but it was very powerful for me. It was very moving because there was a definite connection.   Something definitely happened deep inside her.  We sat there for the hour and listened to the service together and then the following day, Christmas Day, I received a call quite late to say that I needed to come down again.  I drove down as quickly as I could but I arrived just a few minutes too late. My mum had already died, which was terrible. But at least I had this fantastic memory of the time we’d spent together the day before, which was so powerful.  And I’m eternally grateful for that.  Of course at the time I didn’t realise that, quite unwittingly, I’d done a very good thing by listening to music that meant so much to my mum. I had no idea. It was just by luck.

SUE:  Why do you think that this great connection is made with music when other connections in the brain have been lost?

PIPPA:  Well, it’s very interesting Sue.   Two years after my mum died I set up my blog and I began to become far more immersed in the dementia world.  And actually it was thanks to you Sue – I don’t think you know this – because the first outing I had as a blogger was to an event at the House of Lords where Sally Magnusson (the daughter of the late Magnus Magnusson, former presenter of Mastermind) was launching her book, “Where Memories Go”.  In it she talks about her mum Maimie Baird who always loved to sing and the fact that, right up to the very end of her life with dementia Maimie she was able to sing all the words of the songs.  Sally researched why this was and in her book (which is a beautifully written memoir of her mum) she talks about going to visit the late Oliver Sacks, who puts it very well.  He says that the past, which is irrecoverable in any other way, is embedded in music as if in amber, which is a wonderful way of putting it. 

There are a number of reasons why music connects so powerfully.  It’s a bit like a tip-of-the-tongue moment because music connects to various different parts of the brain and there are so many different elements of music – there’s the rhythm, the cadence, the lyrics, the tone etc.  And because of all these different elements, various parts of the brain are used,many neurons are firing and then a connection is made, as it is when you’re thinking of a name and people are firing questions at you – and suddenly that tip-of-the-tongue moment will come and you remember.  And that is what happens with music.  In addition, music connects to the bits of the brain that are the last to be destroyed in somebody with dementia, so they are still working. 

SUE:  And others have taken up this theme of music and its benefits for those with dementia, I believe?  And you’ve come across some of those and work with them?

PIPPA:  Yes, several actually.   One that springs to mind is called Turtle Key Arts.   They use all the arts but they have one sector that is Turtle Song, and I went along to see how it works.  It’s extraordinary because really high level musicians are involved.  They work in collaboration with English National Touring Opera and with the Royal College of Music – so at extremely high levels – and these musicians join with people with dementia and their families and carers, and over the course of 10 weeks they work in collaboration to create a song.  They choose a topic such as holidays, summer, winter or Christmas – but whatever the topic is they all work altogether.  They meet and create a song and then over the 10 weeks they will refine it and then they perform it in front of quite a big audience.  I couldn’t really get my head around the idea until I saw it in action, but it is absolutely collaborative.   The people with dementia contribute just as many ideas about what should be put in the song and the way it should go as the musicians.

SUE: Now, I understand you have a bit of a mission yourself to use music in a way that can really bring benefit to those with dementia and perhaps also other older people, via the radio?

PIPPA:  Yes. Well, this wasn’t my idea. It was at another event at the House of Lords (I don’t spend my entire life at the House of Lords!)  But this was another dementia event to do with music and dementia, and the guest speaker this time with the soprano Leslie Garrett, who gave a wonderful speech. She is patron of a dementia and music charity called The Lost Chord (her auntie Joan had dementia) and at the end of her speech (which was brilliant, she kept bursting into song), as a throwaway remark, Lesley asked if anybody present remembered Singing Together, a radio programme on the BBC. 

SUE:  Which we are far too young to remember ourselves!

PIPPA: Yes, quite.  But, well sadly, I’m not too old and I did remember it.   It was before we met Sue.  I was about eight or nine and I was at school at a convent.  I’ve researched this – I couldn’t remember all about it – but it turns out that on a Monday morning at about 11 o’clock the nun would tell us that we were all going to listen to Singing Together, and she would turn on the radio.  The presenter at the time was William Appleby and he would say a bit about the song (the songs tended to be simple songs with rousing choruses), then he’d sing a couple of bars and tell us to sing it.  So we all sang it – and I can really remember doing that.   And the point was that the programme was introduced way back in September 1939 at the very outbreak of World War II on the BBC’s Schools Service to bring together children who’d been evacuated at the beginning of the war.  The idea was – as the title says – singing together would bring together evacuated children who had been displaced from their families.  Of course, I knew none of this at the time, when I was just eight or nine, but I do remember that sense of community, that you felt that you were all singing together and that all over the country children your age were singing the same words of the same song at the same time.  There was something very sort of “coming together” about it.  And Lesley Garrett’s idea was the BBC should reintroduce the radio program, this time for older people and those with dementia, and I thought that it was a brilliant idea.  Its brilliance lies in its simplicity and I love the echoes of people being sort of displaced from their homes into care homes with the evacuee children during the war. 

SUE:  And they would be the generation who remembers that of course?

PIPPA: The might well be, absolutely.  But the other great thing about the idea is that because it’s a radio programme it doesn’t have to apply to just one sector of the community.   Anybody could listen – it’s for all generations. All you’ve got to do is lean out and press the button on a radio.   Many care homes don’t have very good Wi-Fi and Lesley’s idea is just so simple.  You could have groups coming together, you could have an activities coordinator in a care home making sure that everybody listens or you could just have an old man in his home who wants to listen to the radio and puts his radio on, or you could have mum in a kitchen with a young child who wants to sing at the same time, and they might know that granny up in Derbyshire, who is in a care home or in her home, is also listening. It’s a fantastic connector. 

SUE: And perhaps those benefits could be brought to a wider community, perhaps through something called social prescribing?

PIPPA:  Yes. It’s absolutely social describing.   And this is particularly relevant to dementia because of course, there is no cure. So despite the fact that pharmaceutical companies have spent billions of pounds trying to find a cure, there’s not been much progress, even in terms of mitigating the symptoms.  For some people at some points of dementia, some drugs might just slow it down a little bit, but there’s no cure so dementia is a condition for which social prescribing is absolutely brilliant – whether it be through gardening, the arts, poetry or reminiscence work, but particularly music because there are these neurological reasons why music is such powerful connector. So I’m very pleased that in the current Health Secretary Matt Hancock we do seem to have somebody who believes in social prescribing, who understands the value of other ways of going about things that don’t involve drugs, which is great in terms of dementia.  And yes, if we can push forward and use music in a way that will really help people with dementia I think that will be absolutely wonderful.  We do seem, hopefully, to be doing this, which is absolutely great.   The Government have some other distractions on their mind at the moment but I’m really hopeful about this because I do think that traction is being gained now, so that’s very good.

SUE: Well if I know you Pippa, perseverance is your middle name and with you behind this, the idea should really get some traction. I saw that perseverance when you’ve got your book Invisible Ink through to publication and I’m sure you’ll take this all the way.   It’s been absolutely lovely hearing about this passion and there are others you’d like to talk about as well. I understand?

PIPPA:  Yes. Absolutely. There’s so much to talk about.  For my next podcast I’m going to talk about some of the inspirational individuals I meet along the way with my dementia work.  It’s interesting because often, when people hear what I do, they think it must be very depressing, but actually it’s quite the reverse.  My work can be very uplifting and inspirational – and that’s what I’m going to talk about next time.

SUE: I really look forward to hearing about those individuals. Thank you so much.

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My first video podcast

Welcome to my very first video podcast – or vlog!  It’s the introductory episode of an occasional series and in it I chat to my childhood friend, distinguished broadcaster and journalist Sue Saville, about my family’s dementia story.   (Best viewed, if you can bear it, in full screen, by clicking on the four small arrows to the left of the word “Vimeo” in bottom right hand corner). 

And once you’ve watched it, do feel free to leave me a comment or suggest who or what (in the way of dementia organisations, charities, social enterprises etc) you might like me to talk to, or about, in future. 

And here is the transcript of my chat with Sue: 

PIPPA: Hello, my name is Pippa Kelly and some of you may know me through my dementia blogs and articles and in this series of podcasts I’d like to talk to you about what’s going on in the dementia world, about best practice,and some of the really inspirational and uplifting stories that I cover in my blogs and articles.

I know that it’s extremely sad that, despite the fact that Alzheimer’s was actually discovered well over a hundred years ago, and despite the fact that pharmaceutical companies have spent millions of pounds trying to find a cure for dementia, as yet very little progress has been made and there is very little medication that  slows down the symptoms of dementia – or, there are one or two drugs that do so if taken at certain times by certain individuals.   But – and this is important and this is the good news – there are so many ways in which the lives of those with dementia and their loved ones can be enhanced, and it’s those ways that I’m going to concentrate on in my podcasts.

For the first one I’d like to tell you a little bit of background about myself and why I became so interested in dementia, which was because of my mum Kay Kelly who for the last decade of her life lived with vascular dementia. 

I’m delighted to say that here today to talk to me about my mum and my family, and all the experiences that we went through with mum’s dementia – and what set me off on this journey – is a very old friend of mine called Sue Saville.  Sue is a distinguished journalist and broadcaster; she worked as ITN’s medical correspondent for many years.  But today she’s here because she’s a very old friend of mine and she knew my mum, my family and the house, Robinwood, where we all grew up, which is very integral to my mum’s dementia story  Sue is here today to put me on the spot, talk to me a bit and fire questions at me.  So, hello Sue and thank you very much for coming. 

SUE: Thank you Pippa.  I’m delighted to join you, and having known you all these years and known your family, it’s been quite a journey for you and for your writing.  I was delighted when you won an award for your dementia writing.  And so, it all started with your mum?

PIPPA: Yes, it started with mum and it really began in the early 1990s when her behaviour – she’s always been slightly eccentric I expect you remember Sue – but this eccentricity started to become much more pronounced.  The main thing was that mum refused to move from our house, Robinwood.  Mum came from a very poor background and she loved this house; it was, much to her delight, detached, though it was very modest, with three bedrooms.  But mum refused to move even when it became apparent that because of dad’s health – he had a triple heart bypass aged 78 – that they had to move.  The house was built on a very steep slope with gardens that pitched down to the River Mole.  But mum just refused.   I have two older siblings and when dad became so ill that it was dangerous for him to remain at Robinwood, we children decided it was time to take matters into our hands and come up with a plan to get our parents out of the house.  It was a heart-breaking plan and because I had Power of Attorney, I had to do the wicked deed.   The plan was that I would have to sell mum’s adored Robinwood without her consent or knowledge – I had to sell the house from under her.

SUE: That must have been heart-breaking for yourself, for your whole family, but particularly for you.

PIPPA: It was shockingly terrible.  The sale of Robinwood was to be the beginning of ten really difficult years for me and my family, but the weekend that I’m about to tell you about was hardest of all. 

We decided that my sister would invite our parents down to stay with her and her family in Somerset – something we knew mum that would be only too happy to do.  But the sting in the tail was that when my sister brought our parents back up, she would drive them not to Robinwood but to this new, much more appropriate flat for them which, again using my Power of Attorney, I had bought in nearby Dorking.  

So it was that my sister picked up our parents one Thursday morning, then phoned me to say that the coast was clear and I could come down.  I drove down from London and – I remember this very well Sue – I walked through the front door of Robinwood and the house was still warm, my mum’s coffee cup was still on the kitchen table because of course she thought she was coming back.  I felt heavy with guilt – I remember this feeling of not being able to move virtually.   The only way to cope was to cut off my emotions and get on with what I had to do, which was to pack up this house which had been my home in our teenage years.  You remember it well Sue, we used to swim in the river in our teenage summers.  I had to pack up the house in a matter of hours.  So I just chucked into black bin bags – unlooked at, unopened – the contents of drawers, cupboards and wardrobes.  I resent the fact that I had to do this because I later realised that dementia robbed me not only of my mum but of a chance to say a proper goodbye to my childhood home.  My brother arrived from Ireland later that day to help me.  The following morning the removal lorries arrived and took what furniture would fit into the new flat, which – on the doctor’s advice – we set up to look as familiar and comforting as we could for mum, to make it as easy as possible for her to make this difficult transition.

SUE: That must have been a really horrible scar for your family and desperately painful for your father, your family, yourself and your siblings?

PIPPA: It was, and when mum came back to that flat she refused to go in, she had a sort of hysterical breakdown or, to put it another way, her dementia, until then staved off by being in a familiar home for 38 years, tipped her over the edge and she ended up having to go into hospital – this is very common with dementia if there is a sudden shock such as the death of a spouse or moving home.  Mum’s admission to hospital was itself very traumatic for us as a family, particularly for me.  Because, by chance, mum already had a consultant’s appointment booked for the Monday and I warned him in advance of all that happened over the weekend.  He, in turn, warned me that if mum refused to be admitted to hospital voluntarily, he would have to use the Mental Health Act to section her. 

Mum and I entered the consultant’s room and to begin with mum seemed okay.  But when the consultant started to reason with her that she needed to leave Robinwood she began to get very agitated again, and when he said that he was stepping out to fetch a colleague I knew that this was his signal to me and he was about to section mum in front of my eyes.

SUE: Gosh, that must have been very frightening.

PIPPA:  It was, and I burst into tears.  I’d had a very difficult 72 hours.  Then an extraordinary thing happened because mum saw this and she said quite clearly.  “Well, I will go into hospital then because I can’t upset my baby”.  She always called me her baby because I was by far the youngest of her three children. 

SUE: So the tables were turned and she went back to looking after you.

PIPPA:  She did.  And it was the last time she did that because from then on I had to look after her – and dad. Mum went into hospital for six weeks and then she lived out the rest of her life (eight years) in two nursing homes. So that was how it all began for me and my family.

SUE: So why have you felt the need to write about this, to campaign as you have done so eloquently?

PIPPA:  I think because it became very apparent that what we had been through as a family was terrible, it was very scarring.  We’re an educated family, I’m an educated woman; luckily I had the time to do all of this and I knew that as a trained journalist I could – hopefully – write about it.  I thought about what had happened and I realised, looking back, that I had run a gamut of emotions over that terrible weekend – and as events unfolded.  The emotions that you go through as you look after someone with dementia are many, including terrible grief, which I’ve heard described as the never-ending grief of the dementia carer.  That’s a very good way of putting git because you watch the person you love disappearing, or changing, before your eyes.  Also there is frustration and anger because you can’t do anything to help these people you love – and also because people with dementia have different ways of doing things and it can be quite frustrating and you get angry and irritated and then, looking back, you feel guilty.  You feel guilty about everything.  Another, little-spoken of emotion, which I have talked about publicly is that of resentment.  Because your normal everyday life – in my case with my husband who has his own company so is very busy, my then very young daughter Emily, my writing as a freelance journalist, my socialising – was skewed out of its normal context because I was spending more and more time looking after my elderly parents. 

SUE: You’ve been very honest about those emotions.  When you spoke about it publicly what sort of feedback did you get from other people?

PIPPA:  They were thankful, I think.  They thanked me for saying that I felt resentful because they had never wanted to admit it even to themselves.  I realised when I set up my blog – blogging is a much more personal way of writing than writing for national newspapers – that I had to be honest.  There was absolutely no point writing about all this if you were going to paper over the cracks or pretend that everything was alright when it wasn’t.  You had to be quite brutally honest about it.

SUE: But you could perhaps only do all this once your mother had eventually passed away because then the grief that you described, when she was disappearing before your eyes, was fading and you were finally able to have that closure and move on with the writing?

PIPPA: Yes, there was a two-year gap.  My mum died in 2012 and I set up my blog in 2014.  It may be different for other people but I think I needed that barrier between this very raw emotion that I was experiencing – you are in the middle of a maelstrom of emotion – and it probably wouldn’t have been great to try to write about it then.  But with a little bit of distance you can begin to gain a bit of perspective, you can start to extrapolate and think what actually was going on at the time.  A lot of people who are caring for relatives say that they can’t really see beyond the next hour or two – that’s the way it goes when you’re caring for people.  With a bit of distance, I was able to write, and the two things – being a trained journalist and having this real passion because I had been through so much – came together and this connected with people.

SUE: Do you think there’s been some progress, that things may have become better?

PIPPA:  Yes, it’s very interesting because I realised that I was an ingenue to all of this. I entered the scene when I set up my blog – which wasn’t intended to be all about dementia by the way, it was just that it quickly became apparent that people wanted to read about dementia – I was always well aware that I had stumbled into this world and others had been in it, through social care or whatever, for twenty or thirty years, for their whole career.  Whereas I was an upstart who had really only started to write about the subject because of my mum.  So I would ask people if they agreed that there seemed to be a shift going on in the whole social care around dementia.  And they did.    That was 2014.  In 2013 the first dementia summit was held in London and there was the whole dementia friends programme.  A lot of people feel that this is a bit tokenistic but these are important movements and it takes a long time to achieve social change.  Then there is the soft power of culture – suddenly virtually every radio and TV programme had a dementia storyline, often very well done and properly researched.  So I saw that things were changing all around me, as well as in dementia care itself, with the sort of things that were being done.  As soon as I realised this I made it my job to seek out these positive stories.  People would often ask me whether it wasn’t depressing writing and talking about dementia and I would tell them it wasn’t – that actually it can be very inspirational and humbling to learn about what people are doing.  Often individuals who have been personally affected by dementia in some way decide to set up charities or social enterprises to make life better for those with the condition and their families.  I saw that a lot was being done and a lot of progress has been made in the last few years – very late in the day – but it’s being made.

SUE: You’ve got a lot to talk about.  You’re going to do some more podcasts.  Could you touch on some of the areas that you want to develop and talk about in future.

PIPPA: Yes, anyone who knows me in the dementia sector will not be surprised to know that the next thing I’m going to talk about is a great passion of mine and that is the great power of music to connect with people even when they are in the very advanced stages of dementia.  Again, there is a personal story involving me and my mum that I will talk about.  But I knew nothing about the power of music for those with dementia when this poignant experience occurred with me and mum.  But I do now and there are neurological reasons for that, which I shall talk about.   Also, there’s a campaign that I am still pursuing, which is to get the old BBC radio programme, Singing Together (which was for schoolchildren), put back on the airwaves, this time for older people and those with dementia – or for anybody.  The whole joy is that it could be for anybody, but I think it would be hugely beneficial for older people who are often lonely and for people with dementia.  

SUE: With that passion and that determination I think there are great things to talk about there.  Thank you so much Pippa.

PIPPA: Thank you Sue – it’s been great.



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Our Dementia Choir

Line of Duty’s Vicky McClure presents Our Dementia Choir on BBC1. Credit: BBC/Curve Media

At one point in BBC 1’s Our Dementia Choir, the wife of 67-year-old Chris, who is living with the condition, says to Line of Duty’s Vicky McClure, “What you’ve given Chris is unbelievable”.

And it is.  For Chris’s rare type of frontal temporal dementia affects his behaviour more than his memory, making him unpredictable, uninhibited and unable to express his emotions.   He and his wife both worked full time and then – “Wham bam!” as Jane puts it – because of Chris’s condition they are forced together 24:7.

“It’s like your dream come true,” Chris chips in.  Jane lets out an instinctive, contradictory expletive and in an instant we see behind the veil of normality to a world – Jane’s world – in which days run into nights because Chris doesn’t always sleep.  It’s life with dementia in all its more-than-difficult, sleep-deprived reality.

Yet – and here’s the magical, unbelievable bit – after several weeks in a choir consisting entirely of others who, like him, have dementia, Chris is able to express emotion; he cries as he sings the song they’re rehearsing.  When Jane asks why, Chris says it’s because the words mean so much to him.

I was lucky enough to have a sneak preview of the two-part documentary and it’s compelling viewing – poignant, yet uplifting too.  Testament to the fact that there is life after a dementia diagnosis.

If you’re not familiar with the Beatle’s ballad, In My Life, do look it up.  Its lyrics are all about not being here anymore, about forgetting things and people – about enduring love.  Jane reveals that she and Chris stood in the kitchen in floods of tears, saying how much they were going to miss each other.  It was a moment of sadness, but also of connection; proof, if any more were needed, of music’s extraordinary powers for those with dementia.

McClure puts it better than I could.

“In some ways it wasn’t all sad, it was a lovely feeling.  To be able to cry with your partner and have a moment when you’re both on exactly the same page and you can be there – that’s why we’re doing this”.

McClure has boundless empathy & is the perfect presenter for Our Dementia Choir. Credit: BBC/Curve Media

McClure, unlike her scarily emotionless onscreen persona DI Kate Fleming, has boundless empathy and turns out to be the perfect presenter for an informative, sensitive, honest – but above all profoundly moving – programme about a group of individuals living with dementia who come together to sing.    She saw how music helped her adored Nana Iris (or Nona as she calls her) by “changing her mood, calming her down and, for a while, bringing us back the old Nona”.

Of course McClure is saying – albeit with the full force of the BBC behind her – what so many of us in the dementia sector have been saying for years.  That music really does help.  And she doesn’t just say it, she teams up with scientists exploring pioneering techniques to reveal how music can restore a brain damaged by the condition.

Sebastian Crutch is professor of neuropsychology at the Dementia Research Centre, University College London.  He calls music the “special ingredient” for those with the condition – and, needless to say, he and his expert medical colleagues are delighted with the findings of their ground-breaking experiments involving the dementia choir.

To be honest, while scientific evidence is necessary and invaluable, the truth is there for all of us to see when we watch videos such as Alive Inside, showing how music radically improves the lives of people in even the most advanced stages of dementia.

I unwittingly tapped into this potent force when I switched on the radio so that my late mum (who lived with dementia for her last decade) could listen to the traditional Christmas Eve Service of Nine Lessons and Carols from King’s College, Cambridge.  Mum had been sleeping in her nursing home bed for several weeks – then, as the chorister sang the opening bars of Once in Royal David’s City, she opened her eyes.  It was all she did, but it was enough.  A connection had been made; and this knowledge was of immense comfort to me when, the following day, mum died just moments before I arrived (I later wrote about it in The Telegraph.)

It’s one of the many reasons why I’m campaigning for the BBC to take up soprano Lesley Garrett’s brilliant idea for them to reintroduce their old radio programme, Singing Together, which I remember from my schooldays, this time for older people and those with dementia.  Given that, scandalously, just 5 percent of care homes have access to quality music therapy – the reintroduction of Singing Together would, at a stroke – or at the push of a radio button – provide thousands of people with life-enhancing benefits they can otherwise never enjoy.

Unlike me, or probably many of you reading this, the majority of those watching Our Dementia Choir will be unaware of music’s potent force.  This will change after they’ve witnessed its effects on Chris and Jane, or other choir members such as 91-year-old Eileen who has advanced Alzheimer’s disease.  After a few minutes singing She’ll Be Coming Round the Mountain with music therapist Chris Wilson, Eileen becomes animated and talks and moves about far more.  She comes alive – there’s no better way to put it.

On the night of the performance in front of a 2,000 strong audience at Nottingham’s Royal Concert Hall there’s not a dry eye in the house.  Choking back emotion, McClure says she’s never felt a room filled with such love.  She closes the programme with a tribute to her Nona.

“This is her.  This is why I’m here – so she’s having a real legacy and I’m proud of her for that”.

I know just how Vicky feels.  It’s because of my proud, flame-haired mum that I’m sitting here now, tapping out my dementia blog, tears sliding down my cheeks.

Musical director Mark De-Lisser conducts Our Dementia Choir. Credit: BBC/Curve Media

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The Art of Living

Photo credit © Royal Academy of Arts, photographer: John Hammond

What do you see when you look at this painting?  A couple in the foreground who look a bit bored in what looks to be a gallery or artist’s studio?  Or perhaps your gaze goes straight to the collection of impressive looking busts and the striking white horse which, it suddenly hits you, is bang in the middle of the piece.  No coincidence, surely?

These thoughts and questions were raised by a bunch of about 16 of us gathered in one of the fine collection rooms of London’s Royal Academy the other morning.  None of us knew what the painting was called, or who it was by.  We were simply observing closely, guided by two experts. Within the space of a few minutes we had been drawn in, our day to day lives forgotten, our attention riveted on a piece of painted canvas.  Another world.

Dr Brian Morris, 76, wondered why the slumped, seated figure on the right had no head.  It could be, explained Kim Jacobson, one of the artist educators steering the discussion, because the woman was bent over, her back to us so her head was obscured.  An explanation which, on careful examination of the sculpture in the painting, seemed eminently feasible.

Penny Davis observed that the woman in the foreground seemed to be keeping herself to herself, that there was a calmness about the couple.   There was broad agreement that the pair knew each other and were comfortable in each other’s company.  As to their relationship, a long debate ensued as to its nature – friends, uncle and niece perhaps, or father and daughter, lovers even?

The great thing about the morning was that each contributor’s opinion was as valid as the next.   Unless I’d been told I wouldn’t have known that at least half those present were living with dementia.  For we were all enjoying one of the Royal Academy’s monthly Monday morning art, coffee and conversation sessions for people living with the condition (for more information, see the link here)  .

It turned out that Dr Morris, attending with his wife Marian, had been diagnosed with Alzheimer’s six years ago.  “Brian has good days and bad days” she told me.

“Coming to the art session gives him a good day because he’s living in the moment and not worrying that he’ll get something wrong – his opinion of the painting is as valid as that of the person sitting next to him”.

Penny Davis and her daughter Harriet at the Royal Academy

Seventy-seven-year-old Penny who had come with her daughter Harriet was diagnosed in 2016.

Here, in the Lee and James C. Slaughter room of the Royal Academy we were all existing in the here and now, in front of an intriguing painting, free to say as much or as little as we wished.  No labels.  No discrimination.  No stigma.  For myself, I found it very refreshing to take time out of a busy life to simply stop and stare and think.

The morning, with its emphasis on living in the moment, reminded me of an early blog I wrote about a report with some innovative ideas on how to improve the lot of those with dementia.

One the most controversial suggestions of the report, commissioned by Red and Yellow Care (now rebranded as Halcyon Doctors) is that in the process of helping people with this cruel condition to live well, too much emphasis is placed on memory, on things as they once were, instead of things as they are.  It’s a notion that defies conventional thinking, which often sees those with dementia being surrounded by objects and photographs from their past in an effort to make them feel happier and more secure.

The report cites Nobel Prize-winning psychologist Daniel Kahneman, who draws a key distinction between what he calls the “remembering self” (our memory of our experiences) and the “experiencing self” (the elusive here and now which those of us with busy lives rarely stop to dwell in).  Kahneman suggests that we should all suppress our “remembering selves” a bit and focus more on the present.

The report says that Kahneman’s theory has implications for those with the condition. “One might even argue that the growing inability of people with dementia to remember – coupled with their often uninhibited approach to enjoying happenings in the moment – has something to teach those without dementia about the value of the experiencing self”.

When the actor Timothy West spoke of his wife Prunella Scales losing the ability to remember things very well because of her Alzheimer’s, he described how much the two of them enjoyed their leisurely canal trips.   “You don’t have to remember things on the canal.  You can just enjoy things as they happen – so it’s perfect for her”.

Meanwhile, back at the RA, we finally discovered the name of the painting.  It was Tea in the Studio,  an oil on canvas painted in 1932 by Arthur George Walker RA and the two people having tea were in fact the artist’s brother Harold and a friend.

This was intriguing.  But in the scheme of things it wasn’t really that important.  What mattered was the taking part.  The discussion.  The engagement.  The stimulation.  All of us, to paraphrase Kahneman, let go of our piled-up cares, the other bits of our lives, and focused on what was in front of our eyes in the here and now, on our experiencing self.  It was rare, and wonderful.

Occasionally, just occasionally, dementia throws up a tiny morsel of something good to think about.  At the Royal Academy the other Monday morning, it did just that.

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This week seems to be all about carers for me.  I opened my inbox to find an email from one of my oldest friends.  Her mum, diagnosed with dementia the year before, died last autumn aged 85 and now her elderly dad, a partially-sighted diabetic, has developed dementia and is struggling to live alone after over 60 years of married life.   Sad and difficult times for a family I’ve known since I was a nipper.

My friend wondered what questions she should ask three agencies she’d contacted seeking live-in care for her 92-year-old dad.  All three have been awarded Outstanding by the Care Quality Commission, which sounds like a good start, and Linda had already enquired about what was expected in terms of the carers’ accommodation, and about rotas, money and food.

But we all know that nothing beats meeting carers face to face, sounding them out, getting to know them.  People are nothing else if not individual.  As is Linda’s dad.  A lovely man who never quite lost his Nottinghamshire accent despite having lived in Surrey for over seven decades.

What you want, of course, as my mother-in-law identified when her husband needed extra help in his final days, is a blend of professionalism and compassion.  It’s the holy grail of social and healthcare.

Sometimes, fortune smiles on us relatives – as it did with me and dad.  Caught off guard one Friday night (it’s always Friday isn’t it?) by a GP’s call informing me that dad had suffered a stroke and needed 24 hour care immediately I phoned around care agencies with a growing sense of panic.   No one – good, bad or indifferent – was available for at least two weeks.

In desperation I phoned my mum’s nursing home, whose manager saved the day.  “I’ll put in a call,” she said.  The next morning, Saturday no less, Martha arrived at my father’s flat at 8am.  She stayed three years, until dad died.  She was a God send.  A natural carer with a loving touch and a warm heart.

Originally from Zimbabwe, her English wasn’t perfect, but it didn’t matter.   Within a few weeks dad’s rheumy eyes followed Martha’s every move, and in his final months this church-going, middle-aged mother came to mean more to him than any of us family because, with quiet, seemingly infinite patience, she performed the most intimate tasks for him.

Before Martha, before dad needed formalised, live-in care, there was Marius.  A young Polish lad who worked for a charity (so was CRB checked) and did the odd stint at dad’s favourite local restaurant.

When I realised that dad needed a hand with shaving, washing and cooking, word came to me that Marius might like to help out.  I went to meet him before his lunchtime shift at the Rialto in Dorking.   Two hours and three cappuccinos later there was no doubt in my mind that Marius was the one.

Dad, who’d come across several Poles while serving with the Royal Signals in the second world war, loved them.  He didn’t speak Polish but he did speak French, and so did Marius.  The two of them enjoyed chatting en français for hours on end – Marius’s accent was better than dad’s but that didn’t matter, the important thing was that they got on.  Like a house on fire.

In Marius and Martha, I had stumbled across carers who perfectly suited, not just dad’s needs at the relevant times but, just as importantly, his personality – and him.  This feeds into my argument that care homes for those of similar backgrounds – such as the Royal Hospital Chelsea for army veterans, London’s Denville Hall for retired actors and the much-lamented Pickering House in my home town of Dorking, Surrey for ex-journalists (which closed last year) – provide immediate connections and topics of conversation for those who live there.

Recently I came across Elder, a live-in care specialist that matches your loved ones with experienced, vetted carers.  I haven’t tested Elder’s claims but am very much in favour of their advertised offering and will investigate and report back in a later blog.

I was reminded of Marius when I read of the Government’s drive to recruit thousands more care workers, specifically young people.  The Every Day is Different campaign is being promoted on social media platforms and online sites through this month and next to encourage under-40s to take jobs such as care workers, therapists and activity co-ordinators.

It comes as a report by the Health Foundation charity says that a lack of community staff may damage the NHS.  The recruitment drive focuses on the rewarding and diverse work to be found in care – something that many of you reading this won’t need to be told.

But while many of the young care workers involved in the campaign have inspirational stories to tell, they talk too of the poor pay and lack of career structure.  Twenty-two-year-old Greg Mather is a final year degree student who has been working part-time as a domicile care worker for a year.

He told the BBC, “It has been hugely advantageous to me in the long term as it has provided me with amazing experience in working with vulnerable adults”.  But adds that it is not enough to say that ‘you’ll feel so rewarded after each shift’ if you are paid so little.

“For such an emotionally and sometimes physically demanding job it is shocking that the majority of care workers are paid the minimum wage”.

I couldn’t agree more.  In 2013 I wrote a Thunderer column for the Times arguing that as a society we outsource the care of our elderly relatives to formal carers, pay those carers peanuts (less than my then 15-year-old daughter received for babysitting), fail to provide carers with meaningful training or to recognise the complex emotional and physical demands they face and then moan like stink about them.  In six years nothing much has changed.  Now there’s the added worry of a post-Brexit world.

To return to my old friend and her dad, and hopefully end on a more positive note, if any readers have further suggestions for questions that Linda might ask potential agencies and their live-in carers could you leave a comment or DM me on Twitter.  Likewise, I’m happy to pass on the names of the three agencies Linda has approached if you contact me privately – and keen to know your views on them.

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Back to Basics

The BBC has been told to go back to basics and concentrate on public service broadcasting if it wants to survive. 

James Kirkup, director of the Social Market Foundation think tank, hailed the corporation for helping to make Britain not just a country but a nation, but warned that it was in danger of being killed off by the internet as more and more of us watch our favourite TV programmes and listen to radio on our laptops, Ipads and Iphones.  

“When everyone watches the world through their own screen on their own terms, we all have less in common,” he argued recently in the Times.  

I know what he means: I’ve just published a blog on togetherness, urging us all to think less in terms of them and us and more in terms of we when it comes to different generations and those with dementia.

Even more to the point, I have up my sleeve the perfect way for the BBC to redress this balance.  As Kirkup says, trying to fight YouTube and other internet streams on their own ground with youth-focused content hasn’t worked for a behemoth like the British Broadcasting Corporation – in fact it’s only succeeded in annoying existing listeners.

So, why not do what it does best: some good old-fashioned public service broadcasting – in the form of a weekly radio programme which, while it has multi-generational appeal, will hugely enhance the lives of older people (particularly lonely ones) and those with dementia?  To test the waters, trail it on local radio first.  Simples.

I am talking of soprano Lesley Garrett’s inspired idea to reintroduce the BBC’s defunct weekly radio programme Singing Together, this time with a slant towards the elderly and those living with one of the cruellest conditions there is, for which singing has been proven beyond doubt to be hugely beneficial. 

I’ve a sneaking suspicion that Kirkup may have other things in mind when he argues that a BBC focused on public service programming “would offer the cultural common ground that an angry, divided country needs”.   But Brexit withstanding, he is right to say that if a family needs shared experiences and reference points, so does a nation. 

The original Singing Together radio programme was introduced in September 1939 at the outbreak of the second world war to comfort evacuated children separated from their families and help them feel less displaced. 

By the time I was enjoying it as a nine-year-old in my home counties’ convent Britain was into the ’60s and the war was well over.  But I can still remember the sense of reassuring continuity and community that it engendered as I belted out One Man Went To Mow knowing that all over the country hundreds of others were singing the same song at exactly the same time.

The programme, originally aired on the home service for schools, had been moved to 11am on Radio 4 by the time I encountered it.  It ran for just 20 minutes, presented in the friendly Yorkshire tones of William Appleby, who told us a bit about the song – its history and some of its simple musical characteristics – sang a couple of lines and then invited us youngsters to join in.

As many of you may know, I lobbied Tony Hall, the BBC’s director general, to take up Miss Garrett’s idea.  He politely refused.   But as the nation suffers a collective nervous breakdown over Brexit perhaps now’s the time to go back to the corporation, urge it to heed Kirkup’s warnings, return to its roots and its public service remit, and reintroduce a radio programme that will bring the nation together to sing.  

It would be a great way to save the BBC from being killed off by the listening and viewing habits of the YouTube generation – while at the same time providing a wonderful sense of belonging to those of an older generation whose lives are all too often lonely and isolated.

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There was a great Twitter exchange about the term “service users” recently.  Big Ian Donaghy, aka @trainingcarers, asked if anybody else hated the phrase as much as he did. 

“It’s like they had a contest to find the best word for people we care for and the 31st best answer WON!”

His view was shared by numerous other tweeps, many of whom disliked the inhumane nature of the term – Scottish-based @ClydeCarers thought it sounded as if it belonged to someone using a washing machine. 

Nursing home manager @Benjami8784 said the first thing he did on taking up his post was to abolish terminology, telling staff that they shouldn’t use any labels they wouldn’t be happy to wear themselves.  “It works,” he concludes, adding that the home’s policy is to use “people we care for” to differentiate between the different groups.

Innovations in Dementia co-director Damian Murphy (aka @elhijodevera) mused that there was still a long way to go before expressions such as “there was me and five residents in the home” – I must say as a pedant, I’m not wild about the grammar of that phrase, let alone its divisive nature – are widely replaced by “there were six of us”, which is so much better in every way.

Someone else mentioned how people living in care homes suddenly become passive recipients requiring feeding (horribly reminiscent of feeding time at the zoo), when in fact coming together to chat and share food and drink around a table is one of the oldest and best forms of socialising. 

If and when I’m living in a care home and no longer able to eat unaided I’d love a friend, one of the family, or someone living or working with me, to come and sit and chat with me while offering the odd helping hand.   Whereas I wouldn’t like to think of myself as someone in need of feeding – or toileting come to that.

The discussion got me wondering about labels and why we love to dish them out to people who generally don’t want or like them.  I believe much of the reason lies in our inbuilt sense of them and us – nowhere is this more true than in our attitude to older people.    

The American writer May Sarton described old age as “a foreign country with an unknown language to the young and even to the middle aged”.   

While the US philanthropist Bernard Baruch put it another, equally good, way:  “Old age is always fifteen years older than I am”. I’ll go with that, forever and ever.  But seriously, why is old age always over there, somewhere else, never where we are, even when we are?   Because deep inside ourselves, we irrationally think that it will never happen to us.  Until it does. 

I’m of an age now where, catching sight of myself in the mirror, particularly if I haven’t sorted out my hair or carefully applied my camouflage of makeup, I wonder who on earth the much older woman looking back at me over there, actually is.  And then realise with a shock that it’s me. 

This irrational sense of our own individual immunity to ageing combines to contribute to the differentiation, even stigma, felt by society to older people, who are so often viewed as a burden, undervalued and neglected.  All of which of course is not only patronising, divisive and, let’s face it, pretty unpleasant, but a missed opportunity to harness the wisdom and experience of those who are more mature than us.

Sadly, this misplaced notion of them and us in relation to old age is even more pronounced when it comes to those with dementia – with the subsequent increase in stigma and exclusion that this entails. 

I confess that before dementia affected me personally I had no interest in it.  On the rare occasions the condition crossed my radar I was almost certainly careless and unthinking, not only in my use of language but in the way I interacted with anyone who happened to be living with it.  I was never intentionally rude but I didn’t understand what dementia was and my ignorance fed my fear.   Replicate my ill-informed reaction to dementia across the population at large and you can easily see why stigma lingers.

But once my own mum developed vascular dementia, woe betide anyone who looked at her askance or spoke of her dismissively when dad and I took her to her favourite restaurant.  She was my mum.  So, she happened to have dementia.  She was still my mum, with her big heart, her eccentric ways and her numerous faults.  At a stroke my attitude changed and any notion of dementia existing somewhere else, over there, in other people’s lives, evaporated.  We are all in this together.

Now that I meet and write about so many who are dedicating themselves in myriad ways to improving the lives of older people and those with dementia, I realise that the most successful enterprises all share something in common: a sense of inclusivity, of us rather than them and us.

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Lambeth’s Healthy Living Club: there is no them and us, just all of us together

A few years ago I visited Lambeth’s Healthy Living Club where those with dementia and their families and carers come together to eat lunch, sing, dance and generally have fun.  This is how I described it in my blog: “This is not somewhere that “provides care”; there are no carers and cared for, no them and us, and certainly (thank goodness) no service users.  Instead, I met a group of people who have gradually evolved into a community and become friends”. 

The same thing struck me at The Mede – a holiday home-cum-day-club for those with dementia and their families in Topsham, Devon.  The afternoon I arrived eight people were sitting round a table playing a variety of games – it turned out that four of them had dementia, the other four were carers or volunteers.  I didn’t know this and it was irrelevant.  What mattered was the chat and laughter, the endless cups of tea, the delicious smell of freshly baked biscuits and, through the large picture windows, the expansive, ever-changing view of the Exe estuary.

Life is life; it’s finite and it has its ups and downs, but it’s ours for the moment.   Whether you’re young or old, a person with or without dementia, a carer or a someone being cared for, the thing to remember is that we’ve all been put on this earth together.   Divisive attitudes are never good.   



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Only Connect

The other day I caught a mesmerising Radio 4 programme on the history of delusions. In it, Sophie (not her real name) related what it was like to suffer from the traumatising belief that she was dead.

She experienced severe depression and a numbing sense of disassociation and detachment, sitting on the sofa for days on end, waiting, feeling desperately cold.  Then, one day, things began to change “by the simple act of a friend” who came to take her out for the day.

It was a frightening step for Sophie but her friend was insistent; she drove the two of them out of town and as she changed gear, she placed her hand on Sophie’s.  That was all.  It was a human connection.  A human’s touch.

Sophie describes the moment.  “I suddenly thought, ‘My hand’s a real hand, her hand’s a real hand’ and that was the beginning of the delusion disappearing.  The evidence of physical touch made me think, well physical touch means material world, material world means not being dead”.

How extraordinary that something as simple as human touch could have such a positive impact.

The story, which you can catch here on BBC Iplayer, immediately made me think of the very best dementia care, which means treating people as exactly who they are: unique individuals, deserving of the same respect, dignity, time, compassion and, where necessary, comfort as anyone else.

I recalled this powerful piece of radio when I attended a recent Whose Shoes? workshop in Watford aimed at stimulating discussion around how the general hospital can ensure that those living with dementia and/or learning disabilities are offered the best possible experience when they enter its doors.   

Whose Shoes? is the brainchild of Gill Phillips, whose Twitter profile (she has an impressive 26,600 followers) describes her as a catalyst for change in health and social care.  Her deceptively simple but effective board game brings together people, both within and without organisations, who are interested in specific topics – from senior management to hospital porters, carers, family and those with personal experience of the issue, illness or condition – enabling them to explore, through the concept of “walking in each other’s shoes”, the concerns, challenges and opportunities faced by all, from all perspectives.

There are no labels or titles at Whose Shoes? events, just individuals, speaking for themselves without fear of prejudice, judgement or ridicule as they discuss different scenarios.  All voices are equal, there is no hierarchy, no them and us.

In Watford, Tracey Carter, chief nurse and executive director of West Hertfordshire NHS Trust swapped ideas with student nurses, physios, complaints advisors, family carers, disability champions and a representative from the local council.   This vivid little film captures the morning’s energy and creativity, and shows how beneficial human connections were made.

Graphic illustrator Anna Geyer built up a colourful picture of the key themes based on notes written by participants.   I was delighted to hear that the patient’s voice came through clearly, that importance was given to his or her family and personal history.  That the message was to listen, not to assume, thereby affording people the respect they deserve.

Equally good to know was that high on the list was the importance of communication and language – between patients, nurses and staff; and between families and carers.    The morning, however, was more than a talking shop.  Pledges were made, which is where the full power of the person-centred Whose Shoes? approach was revealed.

Gill made it clear that she wasn’t after tokenistic gestures but pledges from the heart, what she calls “Lemon Light Bulb Moments” when individuals realise that “change is not just something that other people do but what I can do”.

Heidi Buckell with Gill Phillips

The hospital’s disability champion Heidi Buckell, 39, has cerebral palsy.  Her moving pledge was to tell midwives not to discount people.  She told a packed room of over 70 of us how her parents were told that she wouldn’t walk, let alone have a job.  In fact, she lives on her own and went to Hatfield university before taking up her post.

Earlier, Heidi had told me that the most difficult part about fulfilling her pledge would be controlling her emotions.  “I want parents to get hope and help if it is what they need,” she said.  But she admitted she gets upset thinking about what her mum and dad went through when they were given nothing but negative messages about how limited her life would be.  Heidi’s words showed the huge benefits to be had from involving “experts by experience”, those who really understand what it is to live with a certain condition or a variety of challenges – because they actually do.

Included in the long list of other pledges were: encouraging patients to “continue to be themselves”, to “see the light come back into their eyes” simply through engaging with them;  improving how  staff communicate with families and patients in order to encourage them in their own care rather than assuming that they can’t do everyday tasks such as showering.

Physio Alan Valdez vowed to be an advocate for those with dementia and learning difficulties, spotting small but important factors that other health professionals may miss and escalating them up to the multi-disciplinary team, thus hastening people’s rehabilitation. No sooner had he spoken than Bonita Sparkes, clinical nurse specialist in safeguarding said she would help Alan to fulfil his pledge by making him a safeguarding champion.

Whose Shoes? workshops are all about making human connections, empowering people and allowing them to fulfil their potential to enhance lives.  Which brings me neatly back to Sophie, the unfortunate woman who believed she was dead and was eventually helped by her friend’s soft, human touch.

Sophie also attributed her recovery to the love and concern of family and friends. Daniel Freeman, clinical psychologist at Oxford university, asked her if she thought that it was this support “and of course that direct touch on your hand from your friend” that had helped her to overcome her distressing delusion.

Sophie’s answer has an astonishing resonance for those with dementia and learning disabilities – indeed for all of us.

“I suppose that somebody taking that care for me touched me in my heart. Navigating full-on delusions you need help, someone’s got to reach out to you, to find you, which is why I’d say to someone with a family member or friend who has gone in that direction, don’t step back, try and reach out, that real human connection will make a difference.  I could feel that human connection when I was far out and lost”.

So many of us at some point in our lives feel “far out and lost”, whether because of physical or mental illness, bereavement, dementia, emotional traumas of one sort or another.  We all need people to reach out, to find us, to touch us and comfort us.  Gill Phillips’ Whose Shoes? workshops provide a safe space for people to explore how they can best do this in a professional capacity, but surely, in truth, it’s what we all need to do for each other.

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Joyous Jukebox Opera

The three professionals L to R: Louise Crane (mezzo soprano), Tom McVeigh (baritone), Francesca Lanza (soprano)

From the moment the slight figure of Francesca Lanza wandered into the nave and started to warm up her vocal cords, I knew that I was in for a treat.  Her soprano voice filled Rosslyn Hill chapel with glorious, unmistakably world-class sound.  And unlike in most opera halls, I was just inches away from its owner.

I was in the audience of The Audition, an opera starring three professionals, specially written to be performed in care settings to an audience of older people and those with dementia.

The daring concept of “Jukebox Opera” is the brainchild of Wiltshire-based Camilla Vickers who, having experienced the profoundly positive impact that her friend Francesca’s high quality opera singing had on her mother as she was dying of cancer, set up the Davina Fund so that others could also benefit.   (Camilla notes that Francesca’s singing also helped her as she cared for her mum).  From this grew HealthPitch, a fledgling organisation dedicated to restoring human connections by enhancing the lives of those who are vulnerable, isolated or in need of care.

Francesca Lanza was soon joined in the chapel by two equally spell-binding performers: mezzo soprano Louise Crane and baritone Tom McVeigh.  The trio play three out-of-work opera singers who arrive to audition for an unspecified part only to find that the director isn’t there.  Initially wary and competitive, they soften when they discover that they’ve all been out of work for some time and decide to see how well they can sing together.

The answer, of course, is very, very well.   Their combined vocal force is superlative.   The evening was inspiring.  Transformative.  Restorative.  And even though, sadly, we weren’t in a care home, I immediately understood why Camilla had been so keen for me to come.

Of course I know about the power of meaningful music for those with dementia – in fact I’m always banging on about it to anyone who will listen.  And I’m pursuing my campaign for the weekly radio programme Singing Together to be reintroduced, this time for older people including those with dementia.  Things are afoot and I will keep you posted.

But what I hadn’t thought about was how much more potent top class performances could be for those who, for whatever reason, find it difficult to communicate and connect with others in orthodox (one could say boring) ways.

Dr Claire Garabedian,  research associate for dementia studies at Worcester university and a professional cellist, understands this all too well.   A member of the HealthPitch team, she argues strongly that any performance, whether story-telling, acting or opera, has to be of a high quality if you want to engage and stimulate the hardest to reach group of people.  Which of course makes absolute sense.

She talks of the powerful communication – the conversation, dialogue, connection – between performer and audience members.  Francesca Lanza, who first sang for Camilla’s mother Davina when she was very ill a few years ago, calls it a bridge formed between the two parties and says that it’s fantastic to experience it.

Louise Crane admits that when first asked to be involved in the HealthPitch project she turned up her nose.  “How wrong was I?” she laughs.  “I would describe this as one of the most rewarding things I’ve ever done in terms of audience response and personal satisfaction”.

If you take a look at the HealthPitch film above you can see the wonderful effect that another of the company’s productions – Six Characters in Search of an Opera – had, not only on the residents, but the staff of the Old Vicarage care home in Dorset.  (If you want a quick hit of pure magic I should fast forward to about 9’ when everyone is belting out Toreador).

Activities co-ordinator Jan Millward says that hearing the opera changed the older people.  She describes one of them.  “His body language changed, he relaxed, he came alive.  He wasn’t just an elderly man sat in a care home waiting for his dinner.  He was Michael again.  It was soaring through him, you could see it, and it was the same with many of the others”.

Jan explains that when people come to live in care homes they tend to lose their identities, becoming not Mrs Smith who lives in Lilac Cottage, but simply a resident.  “We need to break those barriers down and this is one way we can achieve it”.

Her point is perfectly illustrated by the words Tez Tampling, who’s in charge of housekeeping at the Old Vicarage.  Having never been a fan of opera, she says the day that Six Characters was performed she was walking past the dining room and simply had to go in and listen.   “I have never been so moved by music in my life.  The power of their voices was incredible”.

As for the residents – the opera’s effect on them wasn’t just greater than when they listened to other live musicians, it lingered.  A couple of days after the performance Tez says that the residents seemed to have more – she hesitates for several moments, searching for the right word – “peace”.  How wonderful is that?

Baritone Tom McVeigh engages with an audience member

The big question for HealthPitch, as ever, is how the juke box operas can be sustained financially.  To date Camilla has funded them privately through her mother’s inheritance and private donations.   Now film-maker Sarah-Jayne Cooper-White plans to help Camilla develop Health Pitch so that The Audition and Six Characters are used to engage more people in care settings and among the wider public.

In her role as HealthPitch’s head of production, over the next few months Sarah-Jayne, managing director of Somerset-based branding, website and film-making company whitespace, will be creating short films and podcasts to stimulate debate around, and awareness of, the transformative power of singing and choirs, to consider and evaluate their long-term health benefits and their positive impact on social cohesion and loneliness.   The first step will be filming Health Pitch’s current tour of Scotland.

Back in Rosslyn Hill chapel one member of our audience was certainly moved.   During the performance Dr Katrin Fitzherbert, 82, who uses a wheelchair following a serious accident several years ago, was given a conductor’s baton which she used with aplomb to beat time for the assembled cast.   During the later discussions she was asked to describe the event in one word and unhesitatingly replied, “Joy!”   I couldn’t have put it better myself.



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Remembrance Sunday

Pat French, 87, and Barbara Marchant practise their selfies

I thought I’d share a little bit of magic with you in advance of Remembrance Sunday.  It occurred in Bedford, when grandmother and erstwhile choir member Pat French, who is living with advanced dementia, broke into song.

Pat was a little girl during the second world war and, despite her condition, she still remembers how frightened she was of the air raid sirens.  Reminded of the propitious date coming up this weekend by her carer Barbara Marchant, Pat started singing the hymn, I Vow To Thee My Country.  Her 87-year-old voice is pure and true.

I must admit, I couldn’t remember all the words so I looked them up, and while Pat may not have remembered the lines in quite the right order, the great thing is that the music and language flow from her so fluently.  She is obviously content, living in the moment, enjoying her song.  It is absolutely all that matters.  Take a look.



Pat has Lewy body dementia, the UK’s third most common form of the condition, affecting about 100,000 people.   Among other symptoms are problems with understanding, memory, mobility, hallucinations and confusion.

Barbara, who works for Home Instead Senior Care lost her own mum to dementia. She says that seeing Pat singing was incredibly moving and emotional.    “I have seen Pat’s condition rob her of so much, which is why it’s joyous that music can help lift her – it means I can see a little bit of the old her.  She is usually quiet, but we love singing together and she lights up when she sings, which just melts my heart”.

Pat’s daughter Emma Muncaster said that although her mum often can’t remember who she is, she remembers the words of her favourite songs.  “Music calms mum when she is agitated.  She used to be in a choral society; singing takes her back to those happy times and we treasure the moments singing along with her”.

My mum Kay Kelly

My own mum wasn’t a singer but she loved listening to music, often sashaying about the living room to Frank Sinatra and Dean Martin, two of her favourite ‘60s crooners.  And I’ve written before in the national press about how, one Christmas Eve several years ago, when mum had been lying silent and motionless in her nursing home bed for many months, the two of us listened to the Nine Lessons and Carols from King’s College, Cambridge – possibly her favourite thing, ever – and she opened her eyes.

It was to be the last time I saw my mum alive.  She died late at night on Christmas Day, just minutes before I arrived.  So those poignant memories of the day before are precious beyond words.

Little did I know it then but meaningful music has a powerful impact on people with even the most advanced dementia.  Neurologist Professor Oliver Sacks, concluded that “the past, which is not recoverable in any other way, is embedded in music as if in amber”.

Yet research from the Commission on Dementia and Music shows that good quality music therapies are available in just five percent of care homes, 70 percent of whose residents have dementia.

Hence my ongoing campaign to persuade a national radio station to reintroduce the weekly school’s radio programme, Singing Together (which ran from 1939-99), this time for older people and those with dementia.  It need last only twenty minutes or so, introduced by a singer who would lead its listeners (who let’s face it, this being radio, could be anyone from granny living at home to four-year-old Maisie watching her mum cooking) in songs with strong rhythms, rousing choruses and, for those of us slightly older folk, evocative memories.

The idea, I hasten to add, wasn’t mine but that of internationally renowned soprano Lesley Garrett.  A letter to the Times signed by scores of key influencers in the dementia sector called on the BBC’s Director General Tony Hall to bring Miss Garrett’s brilliant proposal to life.  He politely declined.  But I am pursuing other avenues and hope to bring you better news next year.   After all, as 58-year-old Hilary Doxford of Yeovil (who lives with dementia) says, it’s obvious.  “A small investment, a massive return on the scale of joy”.

I like to think that Pat, Emma, Barbara and countless others, whether or not they are affected by this cruel condition, would heartily agree.





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Big Ian

Big Ian. The name fits him like a supersize glove. Ian Donaghy, all 6ft 2ins of him, has big ideas, huge energy and a massive Geordie heart. Many of you will know him through his Twitter handle @trainingcarers.

As we walked together round the grounds of York university in the golden autumn sun, my cockapoo Bert tugging at the lead, Ian told me his story.   It’s an unorthodox one and he’s a difficult man to define: speaker, author, trainer of care staff, erstwhile teacher, with a spell working for the Home Office.    “I’m an outsider in everything I do.   Even when it looks as though I’m on the inside, I’m not.  My only agenda is to make things better, to make people better.  It’s straightforward”.

His latest venture is an online campaign #DEMENTIAisAteamGAME, launched with a series of short, powerful films highlighting the fact that the condition isn’t one person’s or one care home’s business but a challenge – a team game – in which we all  have a part to play.   “As a community we can either be part of the problem or the solution,” says Ian.

Roy, a 94-year-old living with dementia, has a dream to score a goal for Notts County.   If you want to put a smile on your face, click play.  This little bit of magic has already had over 2 million hits.

The films are a culmination of Ian’s strengths as a maverick, inspirational storyteller.   He attributes their success largely to the musicality of his script. “I know how to make somebody laugh, cry, get angry, and that’s how change happens”.

Take a look at this one about 88-year-old Hal from Redcar, who can Skype, do emails and is “still a canny dancer”.   In one week it had over 1,600 views.

There’s no doubt that Ian’s way with language is extraordinary, as shown in his two books.  Dear Dementia is packed with bite-sized chunks of wisdom delivered in Ian’s inimitable style – “Dear Dementia, total strangers undress me, shower me and put me to bed without introducing themselves. Lasses never used to be so forward”.

The Missing Peace, which came out this year, is more structured. Ian describes it as a patchwork quilt of conversations, letters, monologues and stories to explain the bespoke survival kits people have created to survive grief. It’s not about death, he says. “It’s about life and how to be the friend you would love to have. It is about living today not tomorrow”.

Yet Ian, though a proven writer, is very much a doer. He’s also a musician and entertainer who’s “filled theatres for 30 years” and sung with the biggest names around, including James Blunt, Lulu and Justin Timberlake. He keeps this side of his life separate from his care work because some people discriminate against him for it, thinking (wrongly) that he can’t be both.

In fact, it’s the diverse aspects that make him who he is that also inform all he does. Broadcaster Angela Rippon describes him as a “powerhouse of ideas, which he then brings to life”.

Forty-eight-year old Ian was born in Tow Law, County Durham. Following a stint as a 28st doorman he took himself off to university to train to become a teacher, embarking on his career at a school for children with special needs in York. “The students taught me more than I ever taught them,” he says. “They taught me not what to do but how to do it”.

It was to prove the guiding light in his life. The big man doesn’t lecture people, he draws out their potential – starting with the children at Fulford Cross where individual lesson plans (IEPs), worked out between the student, his or her family and the school, ensured that every decision placed the individual at its centre. Sound familiar? It’s good old person-centred care of course.

Unsurprisingly, in 2000 he was headhunted by the Home Office to implement in-school inclusion units to give a second chance to youngsters who had been excluded. In one area under his watch, the number of permanent exclusions fell from 13 to zero in a year. How did he do it? He taught the students for 30 lessons a week with no “frees” for himself and never had a cup of tea in the staff room, instead spending every break with the kids, “so I was always in credit with them because I listened to them.”

In 2010 Ian was headhunted again – by a leading figure in the care sector who wanted him to replicate in the care world the positive impact he was having in the educational field. Ian being Ian, he quit his job as a senior teacher, rolled up his sleeves, donned an apron and plastic gloves to experience life as a carer.

Inundated with work in hospitals, clinical commissioning groups and GP surgeries, in 2012 he set up his own company, Training for Carers (now morphed into – because everyone knows him simply as Big Ian).  He also became a regular on the speaking circuit, lauded for his infectious enthusiasm and thought-provoking delivery.

He works with numerous organisations including Wren Hall nursing home and Landermeads care home in Nottingham, both of whom he describes as outstanding. When I ask him to define excellent care he says it’s when the provider puts the individual at the centre of the wheel, when carers care “not only for the people in front of them but for one another, so that it feels like a community, not them and us”.

It’s clear that Ian Donaghy is a big personality with his own way of doing things. But there is also a softer side to him, as shown by A Night To Remember, the event he established in memory of his mum, whose death from cancer in 2009 was pivotal in his life.

“Before that I was focussed on things that didn’t matter – I liked fast cars and money. Suddenly I realised they don’t matter: when you lose somebody you love, you get clarity, you filter out the rubbish”. Now he wants to use the “rather odd” gifts he’s been given to make a difference for others.

Over the past five years A Night to Remember, in which Ian brings together the cream of York’s musicians, has raised £130,000 for charity – initially cancer charities and now dementia. The last one, at York’s 1,800-seater Barbican theatre, was packed to the rafters.

Other projects include Xmas Presence, a “family Christmas Day” for older people and those with dementia that’s been held in York for the past four years. Rather than giving up their Christmas Day to do it, Ian says those who help out – he calls them his “handful of diamonds” – get Christmas back.

And then there’s Forever Young, a festival of music bringing generations together that’s held at York’s Grimston Court care home. Ian describes it as “the Great British Bake Off with guitars.” This year it raised £7,000 for Age UK York and St Leonard’s hospice; its finale featured a ten-decade band with members ranging in age from ten to 92.  It’s broken down barriers and changed the way people view care homes, elderly loneliness and dementia.

The list of Ian’s roles and activities seems endless. Even he’s not sure of the tally. “It’s just one bloke and a mobile phone,” he says with unusual understatement, before adding that he’s surrounded by incredible people who help him make things happen.

He tells me he’s happy now because he’s “completely on the rails”, everything he thinks, says and does completely overlaps.  They’ve all come together in the #DEMENTIAisAteamGame campaign.  “I’ve got a voice now and I want to give a voice to the people who maybe’s haven’t. It’s not a bad little mission to have is it?”

No Ian, it’s not.

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Old People’s Home for 4-year-olds

“People are rarely happy on their own.  Which is why multi-generation houses are the model for the future: learning from one another, feeling needed, sharing joy. A real recipe for happiness!”

So said Dr Eckart von Hirschhausen, author and patron of a multi-generation house in Berlin’s Zehlendorf district.  I quoted Dr Eckart in one of my earliest blogs back in 2014, highlighting Germany’s pioneering intergenerational day care centres and houses that bring together everyone, from babies and toddlers to older people, with positive results.

Since then I’ve become ever more convinced of the power of mixing up generations – whether with projects such as Alive charity’s Paint Pals project in Bristol, where schoolchildren visit and befriend those with dementia in care homes, to my local Nightingale House in Clapham, which last year became the UK’s first care home to open a nursery for pre-school children in its grounds.  One 89-year-old Nightingale resident said that having the little ones with them was “like being reborn”.

So I couldn’t wait to catch up with the first of C4’s series, Old People’s Home for 4-Year-Olds.  In the longest experiment of its kind, ten young children joined ten of the 400 residents of Lark Hill retirement village in Nottingham.  Its sound track and occasional lingering camera shots of the village itself gave it the feel of a sort of anthropoligical-cum-social-care Great British Bake Off, but it was none the worse for that: I’m all for accessible documentaries with a heart.

Over three months, experts in both young children’s educational development and old age monitored the mood, memory and mobility of the older participants and the social interaction and language development of the youngsters to see whether being together for a sustained period could benefit one or both groups.  The proof of the pudding, as biogerontologist Dr James Brown of Aston university said, will be in the results, so for now we viewers can only wait.

That being said, the opening programme revealed, in the form of 97-year-old second world war veteran Victor, the bleak isolation and deep sense of loss with which older people are so often confronted, even when they are far from alone; it displayed in all its wide-eyed wonder, the unpredictability, honesty and vulnerability of four-year-olds.  And it hinted at the magic that can happen when the two age groups combine their formidable forces.

Clever little Phoenix, 4, struggles to adjust when he first enters Lark Hill.  Lavinia, a softly spoken retired librarian of 81 with Parkinson’s disease, notices this.  She picks up on his love of anything to do with transport and gives him a picture of a blue, old-fashioned lorry to take home.  He can hardly believe his luck. “I hope I’ve done something to make him more outgoing,” Lavinia reflects. “If he greets me when I come in tomorrow then I shall know”.

By day seven, Lavinia is Phoenix’s favourite.  She’s naughty too, for all her quiet exterior.  As a schoolgirl she broke windows playing rounders and persuaded a boy to write their names on the wall – they both got caught.   Lavinia.  The librarian rebel.  Who’d have thought it?

That’s the thing.  Old people are not an homogenous mass of nameless shapes; they are individuals with varied and unique pasts.  Victor remembers hearing the hiss of the shrapnel at the water’s edge on Dunkirk beach.  When he speaks of his late wife he’s no longer a curmudgeonly old so-and-so but the young romantic bereft of his love.  At 102, Sylvia’s been a widow for 40 years.  A lifetime of widowhood.   Her first child was born during the blitz, her midwife wore a helmet.  Now the strength of her grip is 6.5kg, which classifies her as frail – a fall or infection would hospitalise her and potentially lead to long-term care.  But she’s still Sylvia.

Dr Brown adds a note of caution.  “If we can get Sylvia eating and moving more and spending less time on her own, there’s a chance we can make her less frail – but for a 102-yer-old it really is a big ask”.

It’s worth trying.  Malcolm Johnson, Professor of Gerontology at Bath university says, “What we are doing is trying to restore to people what they appear to have lost.  Finding yourself from the past is truly pleasurable and life enhancing”.   Watching the first programme we saw this beginning to happen.

The four-year-olds with their sense of adventure and fearless trust helped to mitigate the painful realities of later life.  Three youngsters accompany Pauline, Kathleen and Victor on a half hour tram trip.  It may not seem much (and other adults are on hand) but for some of the older ones this is the furthest they’ve ventured independently in years.  Until now Victor has, on average, been sedentary for 12 hours a day, often alone and, to quote him, “in the doldrums”.  On the tram trip he’s transformed into a different man – the man he was, perhaps?

“We’ve created a mode of old age which is to create risk free environment for old people but it is claustrophobic,” says Professor Johnson.  “Modest risk, even immodest risk, is very good for older people.  They realise that they can (do these things) and it makes their life richer and better”.

The other side of the coin is, to use a chilling, Orwellian phrase coined by Canadian journalist and author Dan Gardner, the “safest humans who have ever lived”.  The Danish existentialist philosopher Soren Kierkegaard, who had an electrifying way with words, expressed the phenomenon of over-zealous caution in even starker terms.  “To dare is to lose one’s footing momentarily.  Not to dare is to lose oneself”.

I’m looking forward to seeing how the experiment progresses, how much more we’ll discover about the 20 diverse characters and how much the older group regain those things they appear to have lost – whilst trying to forget one four-year-old’s definition of “very, very old” as 37.

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Pickering House – a tale of our times

Pickering House, Dorking, a small residential home for ex-journalists, has been forced to close

I’ve had a busy summer with much travelling (hence my woeful lack of blogs, for which apologies).  There have also been two weddings and two funerals, to misquote Richard Curtis; and both friends’ funerals were due to dementia.

The first of these very sad deaths was that of a distinguished ex-journalist.  His wonderful send-off was attended by many of his former colleagues, one of whom told me about the unhappy tale of Pickering House in my home town of Dorking.

Some of you may remember one of my early blogs in which, prompted by the saccharine but thought-provoking film Quartet (about a group of elderly residents living in a home for musicians), I mused on the benefits of residential homes for those with similar professional backgrounds.

I mentioned the Royal Hospital Chelsea, home of the scarlet-coated Chelsea Pensioners, whose then director of care, Laura Bale, said that she could see the advantages of her elderly residents sharing much in common.   I also wrote of Twickenham’s Brinsworth House (affectionately known as “The Old Pro’s Paradise) for retired actors and entertainers and, last but by no means least, of Pickering House, a residential home catering for the likes of me – that is, journos.

Today I’m sorry to report that Pickering House is no more.  Which, quite apart from my selfish reasons, is sad – and telling.  Because it says much about our current care home model and the way we as a society treat elderly people.

At our mutual friend’s funeral, broadcast and newspaper journalist Nicholas Jones told me the Pickering story.  Nick, who has written an excellent piece about its closure in the British Journalism Review, comes from a journalistic family.  His late father Clem Jones was former editor of the Wolverhampton Express and Star and his brother George was for many years political editor of the Daily Telegraph.

Clem spent his final days at Sandy Cross (the precursor to Pickering House) and Nick describes this time as a celebration of his father’s lifetime in journalism.  His favourite anecdote was when his dad sat down with an ex-Daily Mirror journalist; the two men had never met before but at the end of a week swapping press stories they totted up the names of 32 mutual acquaintances.

Clem’s days at Sandy Cross gave his life a satisfying circularity: he had been raising money for its financial backer – the Newspaper Press Fund (or Journalists’ Charity) – ever since the early ‘40s when he joined the Express and Star as a district reporter.  On Clem’s death in 2002, Nick (then the fund’s chair) knew that his father would want him to ensure that future generations of journalists could benefit as he had.

So when, in 2005, it seemed Sandy Cross would have to close because it had been condemned as inadequate (not least because bathrooms were some distance from bedrooms), Nick oversaw a £1.1 million appeal to build a replacement 20-bed, state-of-the-art home.  The trust’s confidence in the new project was boosted by its handsome investment portfolio and in 2009 Pickering House was opened by the Countess of Wessex.

The new home was innovative in its layout and construction, with an airy central lobby, a well-stocked library and, essential for us journalists, the Ray Tindle bar (named after the 91-year-old local newspaper legend who only stepped down as chairman of his 220 titles last year).

Nick describes the sense of optimism at the time, with the fund’s trustees confident that Pickering House would provide an unbeatable level of care in friendly surroundings where former journalists, friends and families could fraternise and reminisce.

But by the time it opened, the 2008 financial crash had made savage inroads into the value of the trust’s share portfolio and dividend income.  Added to which, Government policy was now to keep elderly people in their own homes for as long as possible, while the ageing population and rapidly rising levels of dementia made the expense of providing more specialised care a steady drain on the charity’s finances.

By 2014 the home’s financial deficit was £597,000, threatening the charity’s various other demands – each year it helps about 200 journalists and dependents with one-off payments and grants ranging from £30 to £50 a week at a total annual spend of £400,000.  Despite managing to halve its annual losses to £250,000, the home simply became unviable and earlier this year it closed.  The reasons for this make salutary reading.

First, it was in the wrong place.  Had it been in the town centre close to transport links, access would have been easier and staffing costs lower.  How often do those of us involved in elderly care bemoan the fact that residential homes are frequently positioned on the outskirts of town – out of sight, out of mind, as if the rest of us don’t want to know what goes on behind their walls? Friends of the Elderly are investigating how care homes might be transformed into community hubs using local resources and assets.  What a great idea.

Secondly, with only 20 beds, Pickering House was too small.  Jill Palmer, the Newspaper Fund’s chair, told me that while staff-to-resident ratios were double that of most homes, it didn’t have the economies of scale available to bigger organisations.  Yet in its 2016-17 state of health report the Care Quality Commission (CQC) found the trend was for smaller homes to be rated better than larger ones, with 92pc of small nursing homes and 89pc of small residential homes rated as good compared with just 63pc of large nursing homes and 72pc of residential homes.  (The CQC says this might be partly because many smaller homes are for people with learning disabilities but, given the importance of person-focussed care, the finding makes sense to me).

Thirdly, by the time the home closed, just 14 of its 20 rooms were occupied – because it could only offer them to ex-journalists – and of the 14 residents, 12 had dementia.  This increased costs, but the home didn’t raise residents’ fees.   Even as I write this blog, today’s media is full of reports and comment columns about the scandal of those with dementia being charged 40pc more than others for their care – typically facing costs of £100,000.  My mum was one of them.

On the up side, Pickering’s 14 residents have all found different homes (where necessary, the journalist’s charity subsidises up to 15pc of their new fees), while its staff have taken other care jobs.

And Ribblesdale, the development of 23 sheltered bungalows and flats in Dorking that the charity also maintains, remains full and viable.  So it seems that in years to come I could return to my old stomping ground to chew the fat with fellow hacks – but still, what a sorry tale of our times is that of Pickering House.

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Seniors Helping Seniors


Sally (far R) & Christian with some of their carers

The only advert that Christian and Sally Wilse ever used for their care service Seniors Helping Seniors appealed to those with “the heart of a volunteer”.  It was a clever idea that immediately weeded out anyone applying for the money.

“Applicants thought they were volunteering”, Sally explained to me when I visited her and her husband at their house in Canterbury. “It means you get those who really want to do it for what it is, not the salary”.

In fact “it” is a job that pays its carers £10.65 an hour.  Some 150 care providers on the roster have been fully checked and approved to work, with an average of 40 working each month.  Client and carer are carefully matched according to personalities, likes, dislikes, interests and chemistry, and clients pay £20.50 an hour.

Since that first advert five years ago, applicants for Seniors Helping Seniors have all come via local word of mouth (and the enterprise has a page on ).

Sixty-seven-year-old grandmother Pat Curtis of Herne Bay took redundancy from the Bank of America eight years ago.  When Sally appealed on Facebook for someone willing to devote a few hours a week to knitting with some of her clients, Pat was happy to oblige.

Carer Pat Curtis has crafting in her DNA

One of six siblings, she has crafting in her DNA and is a member of a knitting group called the Herne Bay Cosy Crew. Since working for Seniors Helping Seniors (a profit for purpose company), Pat has sourced small knitting needles for arthritic hands and says she always arrives at her clients’ houses “casted on”, whether this be for crocheting or knitting.

I accompanied her to see 84-year-old Gladys, who has dementia, at her Faversham home.  Pat calls in twice a week for an hour, in between social services visits.  When we arrived the TV was blaring in the corner, the remote too far away for Gladys to reach.  Unlike usual carers, those from Seniors Helping Seniors don’t wash or dress their clients or dispense medication: their role is that of supportive friend.

When Gladys isn’t up to knitting she holds the wool for Pat, who always makes them both a cup of tea as they sit and reminisce, look through the WI magazine or pot up a few plants.  I saw the power of this simple, human interaction as, TV turned off, the two of them chatted about Gladys’ family; Pat skilfully drawing her neatly turned out, grey-haired friend into the conversation as Gladys’ eyes lit up.  After each visit Pat messages Gladys’ daughters to let them know how she is.

Watching Pat and Gladys reminded me of my dad’s final years when he lived alone in an apartment originally intended for him and mum.  Mum’s dementia was exacerbated when we had to sell the family home and, instead of moving into the new flat, she was admitted to hospital for six weeks before entering a nursing home.

Dad visited her every day as his own health steadily deteriorated.   I lived over an hour away by car and my daughter was only seven, so to keep an eye on dad and provide him with company, I set up a coterie of informal carers.

There was 25-year-old Marius, a Polish charity worker (who’d had criminal record checks) and part-time waiter in dad’s favourite local restaurant.   My second world war veteran, Europhile dad and this young Pole were a perfect fit: they spoke French together, discussed history and where they might go for their next jaunt in dad’s clapped out old Mercedes (which I insured for Marius to drive).

When I became worried about dad’s diet I enlisted the help of Rosemary, a former pub landlady, who produced delicious lunches in dad’s kitchen which the two of them sat down to eat together.  Dad loved nothing more than gossiping over a meal with a glass of red until a series of strokes robbed him of his ability to swallow.

Confined to bed and fed by a tube, dad required specialist help and we employed trained carers, but Marius and Rosemary continued to visit.  They had become dad’s friends – an informal equivalent of Seniors Helping Seniors – providing support and human connection for my father in the transitory period before his medical demands became too much.

What Sally and Christian – and their US predecessor – have created in Seniors Helping Seniors (as I did in my own way for dad) is a 21st century paid-for model to take the place of close-knit communities, friends, neighbours and families.

It all began six years ago when, after successful media careers, Christian, then aged 54, and Sally, then 50, were made redundant. The couple decided they wanted to do something worthwhile with the rest of their lives.

Sally saw an advert in an inflight magazine headlined, “Looking for a few ordinary people with extraordinary hearts”.  It was promoting Seniors Helping Seniors as a 20-year-old US franchise business.  Inspired by the advert, Christian went to meet its founder, an inspirational woman who had worked for Mother Theresa – and in 2012 the idea for a UK version of the original American concept was born.

Sally explained how they sold their house, her husband completed care courses and the couple bought a master licence for the UK from Seniors Helping Seniors in the US.

Their first challenge was to refocus the model for the UK, where people plan ahead for their care far less than in America, where they pay for all their medical provision.  The couple have now sold (for £10,000 each) two Seniors Helping Seniors franchises, run by like-minded people to them, in Harrow and Guildford.

Carer Eileen with Peggy, one of her clients

Retired boarding school matron Eileen Connell has been working for the Canterbury company for four years.  One of her clients, 84-year-old Joan, has dementia and lives alone in her home.  Eileen visits Joan daily for two and a half hours.  When, last year, Eileen noticed that phone calls from Marion, one of Joan’s old friends, had dwindled, Eileen arranged to drive Joan from Canterbury to visit Marion in Crawley.

“Joan was delighted”, Eileen said.  “We all went out to lunch, where the two of them reminisced about shared holidays and adventures while looking at old photos”.  Joan’s feeling of wellbeing and happiness remained well after the visit.

Katherine Spencer, who at 53 is one of the younger helpers, has been in the caring profession since she was 16.  She joined the company last October because she was impressed by its ethos.  “At Seniors Helping Seniors its all about getting it right for the client.  It’s flexible work and I feel respected and nurtured as a carer”.

“It’s about trust,” Sally said.   “When choosing our carers we see the individual, the person behind the CV and match them with the right client.   Families want a fully managed care service where there is always a plan B and flexibility to deal with what life throws out.  Carers love that they can work guilt free, not rushing in and out of people’s homes or taking on too much”.

Seniors Helping Seniors wasn’t around for my dad.  However, I was lucky: Marius and Rosemary turned out to be honest, decent people.  But I won’t forget that heart-in-mouth moment when I entrusted the keys of dad’s apartment to a young Polish man I had interviewed once (albeit having studied his CV and background checks).

Sally and Christian Wilse spotted something good that was happening over the Pond, recognised its strengths, realised it fulfilled a growing need – as far-flung families, greater numbers of working women and increased life expectancy result in too many older people being left to fend for themselves – and decided to replicate it here.

What’s more, they put clients’ needs at the centre of their service and tailor it around them with carefully matched carers rather than creating a one-size-fits-all framework.  It’s neat, it’s simple, it works and – best of all – it can be replicated.  Let’s hope it is.

Christian & Sally Wilse wanted to do something worthwhile & founded Seniors Helping Seniors


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Thank you Barbara

Barbara Windsor in 2010, Wikimedia Commons

A few years ago as I wandered along a London street looking for a parking ticket machine, I saw an immaculately dressed, petite blonde I recognised.   “Hi,” I said.  “Hello,” she replied, giving me her trademark beaming smile.  It was only then that I realised the woman was Barbara Windsor – familiar, yes, but not known to me at all.  She could have ignored me (goodness knows how often this must have happened to her), but instead she graciously, kindly, considerately, put me at my ease.  Now it’s our turn to do this for her.

For the 80-year-old actress, famous for countless Carry On films and, latterly, EastEnders, has Alzheimer’s disease.   Four years after she was diagnosed and as her symptoms become more pronounced, her husband Scott Mitchell has decided to let the world know so that if, when she’s out and about, Barbara acts uncharacteristically, people will know why and “accept it for what it is”.

This is so, so important.  When entertainment royalty such as Dame Barbara Windsor go public about their dementia it makes headlines, generates discussion, raises awareness of a condition which, despite being the biggest killer of women in the UK, despite afflicting 850,000 people and despite costing the country £23bn a year, is still much misunderstood and shrouded in stigma.

In less than 48 hours Scott Mitchell’s announcement has projected the topic into everyone’s lives.  All the national newspapers carried the story, many with double-page spreads.  Yesterday evening Radio 4’s PM programme ran a lengthy interview with Formula 1 racing legend Sir Jackie Stewart, whose wife Helen has frontotemporal dementia.

He spoke informatively, fluently, personally and courageously about what Helen’s illness has meant for them in ways that will resonate with thousands of families up and down the country.  He described how, because of the wealth he’s accrued, he can afford specialist nurses for his wife whereas others, less affluent, less fortunate, cannot. Staggered to discover that there is no cure, Sir Jackie has launched a charity, Race Against Dementia, to fund research into the condition.

On the BBC Breakfast television show a panel including author Wendy Mitchell, who lives with Alzheimer’s, discussed Barbara Windsor’s diagnosis.  In just a few minutes several key points were beamed into households the length and breadth of the land.  The main, crucial, message being that with more knowledge of the condition, the public could better appreciate how it affects those who have it and show them more tolerance, more patience, more understanding.

Presenters Charlie Stayt and Naga Munchetty were well-informed about dementia and its broad-reaching impact on, not just the individual involved, but his or her family – no doubt aided by their previous encounter with Wendy Mitchell, who appeared on the show earlier this year talking about her book, Somebody I Used To Know.  They knew the right questions to ask – and they had the right people providing the answers.

Wendy Mitchell with her daughters Gemma & Sarah

I don’t know if she’s fully aware of it, but Wendy Mitchell is a journalist’s dream.  She speaks in near perfect (and unusually sensible) soundbites.  I say this – I hasten to add – in a spirit of awe and appreciation.  It is one of those things that seems so easy yet is very, very hard to achieve, particularly on live television in front of 1.5m viewers.

“Dementia is like a cruel game,” she said.  “Some days it throws a curved ball at you but because I’m such an optimistic person  I say that tomorrow might be better.  If you dwell on the sadness of bad days, it is a day lost of happiness”.   A day lost of happiness.  Her inversion of the words merely adds to the power of the sentiment.

Wendy’s fellow panellist Simon McDermott sprang to the nation’s attention two years ago when he uploaded YouTube videos of his father Ted (who has Alzheimer’s) singing in the car.  The films soon went viral and the Songaminute Man was born; Simon’s Just Giving page has to date raised over £130,000 for the Alzheimer’s Society.

Picking up on Scott Mitchell’s desire to let others know about Barbara’s condition so that they can understand her behaviour, Simon spoke of strangers’ kindness, of how they became more considerate and mindful of his father’s behaviour once they understood the reason for it.

Kathryn Smith of the Alzheimer’s Society added that if people understand about dementia they can look out for each other so that communities become dementia friendly.  “A little bit of kindness doesn’t hurt anybody”.

“It’s being people friendly”, added Wendy, accurately, succinctly – before, just for good measure, charming us all with one of her most endearing smiles.

On Radio 5 Live’s Breakfast Show Charmaine Hardy, wife of 69-year-old George who was diagnosed with a rare form of dementia called Primary Progressive Aphasia a decade ago, spoke eloquently about how it had affected both their lives.  She stressed that George’s memory was still perfect, which may come as a surprise to anyone who thinks that dementia is all about forgetfulness.  But her husband cannot speak or understand what is said to him.  He has lost his sequencing and problem solving skills, so cannot clean his teeth, feed, wash or dress himself and were he to come across a gate, he wouldn’t know what to do.

George, she told listeners (2.2m tune into the Breakfast Show each week), had been a top scientist.  Now Charmaine cannot turn her back on him for a minute for fear of what might happen.  When presenter Nicky Campbell asked her how it was for her, she paused and we could hear her intake of breath.  “It’s not easy, but I do my best for him”.  How much emotion was contained in those few words.  And, importantly, how much knowledge of this rare, less spoken of dementia, did this thoughtful, caring woman impart to the rest of us.

In an echo of the devastating condition itself – whereby a single diagnosis has an overwhelming impact, on not just one individual but an entire family – when a celebrity and his or her loved ones decide to go public with a dementia diagnosis, the benefits ripple outwards, causing a cumulative, positive effect.

It is all part of the soft power of culture.  Slowly but surely as more and more of those in the spotlight choose to speak out – think of author Terry Pratchett, actress Prunella Scales (who, together with her husband Timothy West, has featured in seven television series about the couple’s canal boat trips following her diagnosis), Sir Jackie Stewart and his wife Helen – the public’s knowledge and awareness of dementia grows, silence gives way to understanding, fear subsides, stigma fades.

The famous have a platform and unrivalled power to use their well-trained voices.  But dementia – as anyone who has it or whose loved ones have it, knows only too well – is also very personal, involving complex, competing emotions.  It takes a brave spirit to talk out.

Fifty-five-year-old Scott Mitchell expressed this in the Times when he explained that, though his wife was aware that he was making her diagnosis public, Barbara may forget she gave him her blessing to do so.  In which case, he said, “I’ll just have to deal with that”.  Along with everything else – the frustration, grief, anger, bewilderment, exhaustion and guilt – which, you and I know only too well, he is going through right now.

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The Little China Clogs

Apprentices Clare and Hilary with Rio at the Remembering Yesterday, Caring Today reminiscence session

It’s not often that you get to travel the world on a Monday but recently I did just that, escaping to the sun of Barbados and the oriental delights of China via Brighton, Southend and Cuba (my geography was always appalling) then zooming back to my childhood via a pair of tiny blue and white china clogs (of which more later). 

I met Rio and her husband Tony driving to Turkey in their car.  They’d loaded it up with suitcases, stashed their chocolates in the front so they didn’t get squashed and then set off for Salzburg, Bulgaria and Istanbul, where they’d had to give a backhander to the police. 

It was quite an afternoon.  In fact, I was at a reminiscence session for people with dementia and their family carers in Belsize Park, London.  A mood of inclusivity, sensitivity, warmth and sheer good fun permeated the place, producing a world devoid of labels, of them (with dementia) and us (without), unencumbered by bureaucracy, titles or paperwork.  A world built on human connections.

Tony and Rio’s car was formed of four chairs.  The suitcases were empty props. The chocolates were imagined.  But we were there, with them.  Transported back in time to when the couple used to travel through Europe with a motor full of clothes to sell in markets and bazaars.  Rio, it turns out, sailed to America on the QE2 not once, but twice.  Tony didn’t go “because he couldn’t afford it”.  When the pair started singing New York, New York, at first Rio couldn’t remember the words but with a little coaxing from her man and encouraging smiles from friendly faces, she was soon belting out the lyrics.  It was wonderful to watch.  Reminiscence therapy – using that day’s theme of holidays and travel – at its very best. 

There were over 30 of us sharing memories, singing I Do Like To Be Beside The Seaside, acting out vignettes of our travels and our lives and – when the picnic was produced – enjoying ice-cream cones and homemade drizzle cake, as well as Chinese treats. 

When I introduced myself to 82-year-old Gloria she enveloped me in her arms.  This warm, expansive Barbadian developed dementia about seven years ago and has been living with her daughter Natasha in Kentish Town for the last six.   

The two of them have been coming to the weekly two-hour sessions for ten weeks and Natasha explained that it offers her mum friendship and social interaction while also stimulating her memories.  “It changes her mood – she is happy and jovial for a couple of hours afterwards and on the way home she is very talkative. She may not remember the session but she knows it gives her a good feeling”. 

It also, quite obviously, benefits 47-year-old Natasha, who gave up her job as a team leader in customer services to care for her mum.  “I do find it difficult and some days I cry my eyes out.  You feel isolated so coming here helps because you don’t feel like you are the only person in the world going through this.  The group gives mum and I laughter, the best medicine of all”. 

Angela used to come with her husband Kenneth before he died last September, just before his 80th birthday.   Having suffered a brain haemorrhage 15 years previously, he then slowly developed dementia.  The couple had been married for 57 years and Angela told me that attending the reminiscence project was wonderful because when they were at home so many things were geared towards Kenneth but the sessions were for them both, as a couple.  She left it for a few months after her husband died but then thought she’d like to have the experience “from the other side”, as a volunteer.  She’s found it cathartic and, like me, believes it’s all very cleverly done. 

The seeming spontaneity of the Remembering Yesterday, Caring Today afternoons belies the tremendous thought and expertise that goes into their preparation.  I arrived an hour before the afternoon kicked off, but already people were loading tables with shells, postcards, sun hats, (blue) passports and origami boats.  Three of them were volunteers, the rest were apprentices learning the reminiscence techniques developed by Pam Schweitzer, a woman whose contribution to the field of reminiscence and dementia earned her, in 2000, an MBE.

Initially a theatre director, she found herself drawn to reminiscence work and in 1983 founded the Age Exchange Theatre Trust, creating and directing 30 professional productions based on older people’s memories that toured nationally and internationally.  Four years later Pam opened the world’s first reminiscence centre in London, providing a focus for training, and in 1993, she founded the European Reminiscence Network with partners in 16 European countries. 

Pam Schweitzer in holiday mode

Talking to Pam, watching her as she leads the apprentices and volunteers in a warm-up session to loosen their joints and vocal chords before the attendees arrive, it is obvious she’s a born leader.  She knows how to project her voice, how to run a show, how to draw people out.

She also has a vision and a strategy, setting up the apprenticeship scheme six years  ago to ensure that the reminiscence project can advance without her (though hard to believe, she is now into her 70s).  The apprentices attend two-day training courses across Europe and beyond (there are schemes in Japan, Singapore, America and Canada).  Trainees attend 12 sessions and submit a 3,000 word essay to show what they have learnt before becoming accredited facilitators of the European Reminiscence Network.

The two day course costs £120, as does the 12 week apprenticeship scheme with debriefs and mentoring support.  The network has received £10,000 from the Big Lottery and smaller amounts from Camden Carers, Westminster Arts and the Greenwich Dementia Action Group.

Apprentice and horticultural therapist Rosie Hollands told me that week by week she sees people with dementia “opening out and relaxing”, adding that you never know what’s going to trigger a memory.

That’s certainly true.  On Gloria and Natasha’s table, among the postcards and shells was a memento I recognised immediately.  As soon as I saw it I was ten again, standing on my bed, reaching up to slide open the glass fronted cabinet and pull out a tiny pair of blue and white china clogs.  I’d not thought of them for over half a century. 

On a warm March afternoon in 2018 I cradled the miniature shoes in my palm, weighing the memories – of mum and dad, my much older sister with whom I’d once shared my room, our matching rose-sprigged eiderdowns – letting the smells and emotions wash over and through me, transporting me back to my childhood.  It was a magical, unexpected moment that brought home to me, quite literally, the power of reminiscence therapy.  I knew that if I ever reached the stage where I could no longer remember much of my past, or the significance of those little shoes, the sight and touch of them would forever evoke in me happiness, security and love. 

The next training and apprenticeship scheme starts on 14 May, and details can be found here.

Natasha and her mum Gloria, holding the little china clogs


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Old Fools

Mark Arends & Frances Grey give stunning performances in Tristan Bernays’ Old Fools at the Southwark Playhouse

Two people, a piano stool and Tristan Bernays’ script are all that constitute Old Fools, currently playing at the Southwark Playhouse, and there isn’t even a linear plot.  Yet somehow, in just 60 minutes, we’re taken into the world of Vivian and Tom, from their first flirtatious dance, through the trials of early careers to the ups and downs of parenthood and his short-lived affair, which nearly splits them apart.  It doesn’t, they make up, because at the end of the day, they love each other.  But then Tom develops dementia and there is, for Vivian, “nothing left for me to love”.

It is a brave, raw piece that makes the audience work.  And laugh and cry.  It is both tender and brutal.  It is, says Bernays, a relationship play in which one of the characters happens to have dementia.

He may not know it, but Bernays could have been speaking at an Alzheimer’s conference.  He’s seen and drawn the man, Tom – with his precarious, impecunious musician’s career, his dreams and loves (of his partner and their daughter) and his selfish, thoughtless flaws – not the condition.   He has portrayed, too, the wife, the translator, the lover-turned-carer-turned-who-knows-what whose sense of self and identity is as broken and lost as that of her partner.   “I can’t do this anymore Tom,” she tells the man who once had the power to make her melt and who now sits, curled in a care home, silent, head bent, gripping her hand until she cries out in pain.  “If I keep coming here there will be nothing of me left”.  This is dementia in all its destructive, ugly truth.


Mark Arends & Frances Grey in Old Fools


Incredibly, there are also moments of lightness and laughter, of witty banter between the two of them in their earlier days.  “I’ll call you.”  “Call me what?”  “Beautiful”.  Vivian is, of course, a linguist.   And it’s words, language eliding, slipping and sliding that guide us, the audience, through the choppy, time-travelling waters of this play.  There is nothing else – no costume changes, no scenery, just two extraordinary young actors in Mark Arends and Frances Grey, breathing life into Bernays’ lines.

After he betrays her, Vivian throws Tom out.  Devastated at what he’s done he pleads to come back home to be with Viv and their daughter.  Home, for Tom, is “you and me and us and Alice” – an often repeated refrain.  Home is wherever they are – this too has a poignancy for anyone whose life has been touched by dementia.  Those with the condition and their families often speak of “coming home” when they are with people they love in a safe, understanding environment.

The other constant echo, the soundtrack to the couple’s lives, is the song to which they are dancing when they first meet, and when we first meet them – Fred Astaire’s “The Way You Look Tonight”.   It is the song, the soul note, to which the pair of them keep coming back, to which Tom, even with his advanced dementia, will always connect.  Its lyrics, set to the familiar haunting tune, are almost unbearably pertinent in the context of Tom’s failing mind.  “Some day, when I’m awfully low, When the world is cold, I will feel a glow just thinking of you”.

But will he?  Will she?  How much of what they’ve accrued over a lifetime together, will remain?  At the heart of this intense, challenging play is what dementia does to a relationship.  What is left when memories go?

It ends with the two of them locked in an embrace.   They are still, just, dancing together to their song, but he’s forgotten the words.  The record may keep turning, but the next step for Tom – as his medical consultant tells him – is not as simple as that.  Each case of this most feared and misunderstood condition is unique and unpredictable.

Old Fools, produced in association with Alzheimer’s Research UK, reminds us all, not just how “really bloody hard” all relationships are (to quote Bernays), but of the painful human cost of dementia, a condition that has only relatively recently come to public attention despite being the biggest killer in the UK.

It is wonderful that producer and director Sharon Burrell, To The Moon and Making Productions believed in Bernays’ short, bitter-sweet play (he describes it as “heart-warming and heart-breaking and I’d go with that) – and impressive that Arends and Grey turn in such deft, nuanced performances in the most intimate, exposed, and unforgiving of arenas.

Plays such as Old Fools, Florian Zeller’s The Father, Matthew Seager’s In Other Words, Inspector Sands’ The Lounge, all of which I’ve reviewed, bring the thorny subject of dementia quite literally into the spotlight, centre stage.  They raise awareness of it, reduce the stigma surrounding it, inform the public about it in brilliant, shocking, creative ways.  And I applaud them all.


Old Fools plays until 7 April at Southwark Playhouse & you can book tickets here. 


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Somebody I Used To Know

Wendy Mitchell’s memoir, Somebody I Used To Know, gives us dementia from the inside out, from the first, fearful inklings that something is wrong to the nitty-gritty of daily life with a progressive disease that gradually forces her to give up those things (from her work to her running) that make her who she is.

As such it is one of the most honest, vivid accounts of living with this condition – in Wendy’s case, Alzheimer’s disease diagnosed when she was just 58 – that I’ve come across. It is also much more.  It’s a multi-layered book: reflective of Wendy’s no-nonsense character yet also offering profound insights into the resilience of the human spirit.

A single mum with two daughters (their dad left when they were seven and four), Wendy has always been independent, thrifty and organised.  She’s also been very busy, working for 20 years as a non-clinical team leader in the NHS and, ironically, renowned for her elephant-like memory.

This all changes when, out for one of her regular runs along the River Ouse, she falls, for no apparent reason.  In fact, she’s suspected that something’s been wrong for a while though she can’t quite put her finger on it.  And then she falls again.  And again.

It takes over three months, hospital stays, neurological tests and scans, two months off work before the D word is mentioned in a letter from her clinical psychologist.  “It is possible that this is a profile of the early stages of a dementing process”.

“But it can’t be that,” her (now adult) daughter Sarah says.  “You’re so fit and healthy.  It doesn’t seem fair”.

And of course, it isn’t. Wendy’s old life has veered off track, she’s on her way somewhere else – or, as she sees it and tells it, to becoming someone else.   “We wouldn’t get on now, you and I,” she tells her younger self.  “We like different things.  You love the hustle and bustle of a busy city, whereas some days I lose hours just looking out of a window at the view.  Just looking.  Just still”.

Wendy with her daughters Gemma & Sarah

It is through acknowledging the changes taking place in herself that 62-year-old Wendy realises that her dementia – hated as it is by her, as much for the havoc it will wreak on her daughters’ lives as on her own – has given her a rare perspective, focussing the mind “in a very special way”.   Yes, it is gradually stealing everything that made her who she once was.  Yet she is still Wendy.  Still determined.  Still strong.  She knows that dementia cannot take away the love she feels for her daughters (which permeates the book), or they for her.

Wendy may experience “a real, visceral grief at saying another goodbye, this time to baking”, anger and frustration at being abandoned post-diagnosis by an NHS for which she’s worked for two decades, and mortification when she forgets her daughter Sarah’s birthday for the first time in 34 years.   But she can, and does, start a daily blog to serve as her memory (which ultimately enables this memoir to be written), set reminders to ping on her Ipad, become a Dementia Friends Champion, campaign to raise awareness of the condition, promote and participate in research.  Her new life becomes as busy, in different ways, as that of the person she used to know, and be. Continue Reading →

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Singing Together

Anyone out there remember Singing Together?  It ran on BBC radio for 60 years from 1939, when it was introduced to reach schoolchildren evacuated all over the country during the war.  At 11 o’clock every Monday morning school teachers across Britain would tune in and their pupils would, well, sing together.

Back in the ‘60s, my hair in plaits, I was one of them and, hopeless warbler as I was (still am), to this day I can remember the friendly voice of presenter William Appleby and many of the words to Pretty Peña, also where I was sitting in my primary school classroom (front left beside a mesmerising painting of a cliff soaring over a turquoise sea) when I belted them out.

The great thing about the weekly programme, first aired on the home service for schools and then Radio 4, was that no matter where we children were, for 20 minutes at the start of the week, we would all be singing the same songs together.  It gave a sense of comforting continuity and community which, even now, almost half a century later, I can conjure up.

I must admit I’d forgotten all this until I recently attended the launch of an important new report by the Commission on Dementia and Music, and no less a person than the internationally renowned soprano Lesley Garrett reminded me.

It turns out that Miss Garrett CBE, as well as having the most gorgeous voice, is patron of the Lost Chord, a charity dedicated to improving the quality of life and well-being of those with dementia, using music.

Like so many of us involved in the dementia sector, Miss Garrett has a personal interest in the subject.  She told us all that when her Auntie Joan (known as AJ) developed Alzheimer’s – and even when she could no longer remember her own children’s names – “the sound of music she adored sung by someone she adored could bring her alive.  She would open her eyes, shake, and tears would pour down her face”. Continue Reading →

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Dancing With Dementia

Sabrina Gargano & Luke Birch
Photo Julia Testa

I studied ballet for fifteen years and, for me, a trained dancer’s body responding to music is one of the most powerful communicators of emotion, often transcending words.

So I was fascinated to hear about a professional dance theatre project inspired by people living with young onset dementia and their families and funded by the Arts Council of England.  The collaborative work, led by choreographer and dance movement psychotherapist Beatrice Allegranti, aims to confront the taboos of loss, hope and intimacy so often found swirling around dementia.   She explained how it evolved from conversations with families affected by dementia, both those who have it and their relatives – conducted in their own homes.

Beatrice listened and observed during the sessions, noticing moments and what she calls, “vignettes”, when those with dementia and their loved ones made certain movements or uttered words such as “I’m grabbing the time I have left”, “I’m like a baby” – or, from partners and adult children, “What is it to be human?”, “I hear your voice now”.

Beatrice and the professional dancers, all in their thirties, then co-choreographed bespoke pieces for each of the eight families which they performed for them, invited them to participate in and discussed with them, before blending parts of all eight into one work for public performance entitled, intriguingly, “I’ve Lost You Only To Discover That I Have Gone Missing”.

The result is an extraordinarily moving piece that somehow evokes dementia – what it is to have it, to live it, to see it in someone you love – in all its tangled complexity and rawness, with occasional moments of quite sublime tenderness.  No mean feat. Continue Reading →

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Extraordinary Individuals


Dr Hannah Critchlow addresses the audience at Neurosense

I often say of my writing that other people go out and actually do things while I merely observe and record in an attempt to join the dots, to make sense out of what I’m hearing and seeing, and hopefully offer a few meagre insights.

Never was this truer than the other night, when I strayed out of my normal dementia and elderly care zone into the world of neuroscience for an event in which experts discussed the links between the brain and personality, what happens when this is damaged or changed and what the future looks like for healing the brain.

Speakers at the NeuroSense event in London included three professors (one also a consultant neurosurgeon) and a young neuroscientist named as one of the UK’s top 100 scientists.  Undaunted, I took my seat as a well-matured English graduate and hoped to goodness I could keep up.

I needn’t have worried.  Dr Hannah Critchlow whetted my appetite with a couple of riveting stories.  The first involved Phineas Gage, a 19th century American railroad foreman who miraculously survived when a stray spark ignited the gunpowder he was tamping down with a 6kg iron rod, rocketing the rod into his skull, through his brain and out the other side.  In neurological circles the story has near legendary status.  Gage lived pretty well for another 12 years and the incident revealed the brain’s ability, in certain circumstances, to regain its health.

The second tale was that of 27-year-old Henry Molaison, who underwent experimental brain surgery in 1953 for his severe epilepsy.  The operation cured the young American of his epilepsy but robbed him of his ability to lay down memories; the next 55 years of his life were spent living in the present moment.   As someone who writes primarily about dementia, my interest was piqued and, once home, I researched the unfortunate Mr Molaison.

Suzanne Corkin, professor of behavioural neuroscience at the Massachusetts Institute of Technology, spent much time with Molaison over the course of his life, writing a book about him – part biography, part case study – called, fittingly, “Permanent Present Tense”. 

Observer journalist Tim Adams says of the book, “One of the fascinating, unsettling impulses in reading Henry’s life is that sense of identity being a bundle of all of the stories we tell ourselves about ourselves. Henry loved to relate the few clear memories of his childhood, over and over, though he lacked a context for them”.  Again, there are echoes of those with dementia. Continue Reading →

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Why Mr Trump has made me angry

Every time I see the television clip of President Donald Trump describing the suspect in the Las Vegas attack – the worst mass shooting in modern US history – a  “demented man”, I get angry.  It was such an insensitive and harmful thing to say.  By attributing the killing of 59 people and the injuring of more than 500 to someone with dementia, Trump’s statement feeds straight into the stigma and confusion that still clings to the condition.

Words are very, very important.  I say this not just because they are my stock in trade, but because it’s true.  In the second dementia blog I ever wrote, in February 2014, I mused on the power of language and its formidable ability to communicate and miscommunicate; to soothe and to wound, to clarify and obfuscate – and to influence attitudes.  To greater and lesser degrees, words always have an impact.  Uttered in the glare of global media by the leader of the world’s most powerful country, their force is unparalleled.

The word “demented” is rarely used now, even in the context of dementia itself.  To use it in the context of the suspected perpetrator of multiple murders is as extraordinary in this day and age as it is unforgiveable.  It also got me thinking about the word itself and why Trump’s use of it provoked such a strong reaction in me.

It’s because by saying that someone is demented you turn them into their condition – in grammatical terms, you turn the noun “dementia”, into the verb, “to dement”.   There are no equivalent words for diseases such as cancer or Parkinson’s.  We don’t say someone is “cancered” or “Parkinsoned”.

So, with one word (demented), we undo all the advances that are being made around the language of dementia and the important work that is being done to inform society about what dementia is – thus positively influencing people’s attitudes towards it.

I am thinking here of phrases such as: “See the person, not the dementia” and “I have dementia, it doesn’t have me”.  By using the word demented (even in the context of the condition itself), we reverse these statements: we are in effect saying that dementia does indeed have the person, that he or she is the condition, or at least its walking embodiment.

But, as anyone who knows me or my writing will testify, I’m a glass half full girl and even as I was writing this blog I was delighted to hear on Radio 4 a wonderful interview with Edward Hall, son of the late, legendary director and founder of the Royal Shakespeare Company, Sir Peter Hall.

I hadn’t realised that Sir Peter Hall had developed dementia before he died.  Edward (himself a theatre director) described his father’s prolific career and his professional influence on him, then turned to Sir Peter’s final years, speaking eloquently about what it was like to see his father’s mental faculties fade over the last six years.

“It’s been a slow grieving process, a slow period of saying goodbye as my father came and went .. in the last couple of years sometimes he would go for months without speaking at all”.     How many of us will relate to that description.

And then, finally, Edward Hall spoke of how “extraordinarily well” his father had been looked after, first at Denville Hall, a care home for the theatrical community in north-west London, and then within accommodation at Charterhouse in the City of London.

“Caring for people with dementia is a highly skilled job requiring a lot of patience, and I’ve been very moved by the way everybody treated him, and the dignity with which they treated him, particularly towards the end of his life”.

It was refreshing to hear praise and recognition for care professionals who all too often hit the headlines for the wrong reasons.  If only a certain American whose words are heard throughout the world could have displayed the same thoughtfulness as Edward Hall when he spoke.  If only.







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Ouch! Tiny break, big lesson

I broke the middle finger of my right hand playing tennis this summer.  It didn’t even hurt much at first, but once we’d returned home I thought I should probably go to the doctor and, much to my dismay, he referred me to a consultant.  “I think you’ll need to get that splinted,” he said.   Turned out he was right.

My finger has now been out of action for five weeks and it will be at least another couple before I can begin to think about using it, even then its naked moments will be limited to short bouts (a bit like sunbathing in an English summer). Typing, as you may have gathered from my blogging silence, is tricky.

I’m right handed, which doesn’t help.  I can’t garden or shower properly, or cook much, or write for long periods.  But (as my husband gently reminds me) my voice is functioning well, so I’ve been giving a few talks about my novel and its dementia theme, and wherever possible raising money for Admiral Nurses and Dementia UK.

In the great scheme of things, compared to the scores of people I write about who have so much bigger, more difficult issues to tackle, usually forever, my temporarily damaged digit is of course little more than a nuisance.  But it has painfully brought home to me what it is to have my daily activities limited, albeit in small ways.

And it has increased my already deep admiration for people like Chris Roberts, Wendy Mitchell and Kate Swaffer (to name but a few) who, though they have dementia, refuse to allow this to dampen their zest for life.  Instead, they turn their experiences to good use – campaigning, writing, blogging, speaking publicly – all in their own inimitable ways; all in pursuit of lessening the stigma surrounding, and increasing knowledge of, this pernicious, misunderstood condition.

It takes guts to do so.  And it takes – as I’m fully appreciating in my current state – huge reserves of patience, mental power and stamina.   A small bone in my body has one tiny, weenie piece of it broken and I swear I’m going to bed more tired than I did before because everything – everything (okay, not talking) – takes that bit more effort.

I have a renewed understanding of Kate Swaffer, an Australian diagnosed with dementia when she was just 49 who has become an international advocate for living well with dementia; she is the chair of the Dementia Alliance International (and, incidentally, this year’s SA Australian of the Year).  Last year she told the New South Wales Nurses and Midwives Association conference about the invisible toll that the condition takes on her.

“For me to function with dementia I look calm on the surface but below the surface I’m paddling quite hard even to speak.  Over the years my paddling has got more difficult and causes more fatigue”.

Yes, I really get that now Kate, particularly since trying to lift everything with my left hand has today provoked an unwanted knock-on effect on my perennially troublesome back.  As I type this (awkwardly), I have a hot compress wedged under my t-shirt (not a great look).  Once one thing goes, others follow, and dementia of any variety rarely visits alone.

Wendy Mitchell

I always look forward to Wendy Mitchell’s blogs on her website, Which Me Am I Today?.  She writes as she speaks so it’s as if the two of you are having a chat – a great and underestimated skill shared by some of the best columnists in the business.  I’m not at all surprised that Wendy has been signed up by Bloomsbury publishers.

In a recent blog post, Wendy described in typically witty fashion, with plenty of light-hearted emojis, a five-hour trip from her home in York to the University of East Anglia in Norwich.

Read between the lines and her account of the journey reveals what it’s like to travel with dementia: hard work. I won’t repeat it here as I could never to justice to Wendy’s way with words, but it involves buses that fail to materialise, unavailable taxis (and wonderful daughters), mislaid wheelchair ramps, train delays and too-quick connections, verbal, paper and electronic reminders and confusing, unannounced rail reversals.  Finally, through an inspired piece of lateral thinking, Wendy calms her own nerves and settles her fears.

“One day my nice journeys will outnumber my scary ones,” she concludes.  And then, as a dig at herself, “Sure I’ve said that before”.

Never moaning, always self-deprecating and forever finding solace in a humble cup of tea (I am so with her on that one), Wendy is resolute in her determination to keep going, to keep spreading her invaluable insights on dementia, whilst hiding from the rest of us the true cost to herself.  I, for one, salute her.

Several scenes from last year’s exceptional BBC documentary about the Roberts family’s experience of living with Chris’s dementia have stayed with me.  But one stood out from the rest because it revealed a rare glimpse of the anger and frustration normally so well hidden by a man who describes himself as “a master blagger”.  Sitting alone on his sofa, Chris railed at his condition.  We viewers only witnessed the scene because of the seven CCTV cameras and sensitive microphones installed in the ground floor rooms of the Roberts’ home.

In the Panorama documentary, over the course of two years, Chris and Jayne Roberts and their family allowed themselves to be filmed in their North Wales home and used video diaries to chart their day-to-day lives, transformed as they are by Chris’s dementia, which he developed six years ago, aged 50.

As the programme’s producer Maria David explains, “Chris’s incredible ability to cope and find solutions around his dementia was truly astonishing; but it left us with a problem: how were we going to illustrate the many difficulties that Chris was telling us about?”   Fixed microphones and cameras were the answer.  But how extraordinarily brave of the Roberts’ family to allow them – to bare their souls to the world in the midst of their lives so transformed by dementia.

I’ve concluded my recent talks by saying that the individuals who work so hard to enhance the lives of people with dementia and their families, humble me.  I always apologise for being uncharacteristically cheesy on the grounds that what I say happens to be true.

Chris Roberts, Wendy Mitchell, Kate Swaffer, and the countless others with this cruel condition who I’ve been privileged to meet (either in the flesh or online), also inspire me.  To keep ploughing on when the going gets tough; to keep writing, even when every second word I type has a splint-enduced typo.  So here I am, sitting at my desk, summoning up my meagre reserves of patience, stifling my expletives and using the delete button all the b+++++ time.




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Forever Caring – the circles of life

Several years after my elderly father died I received a call on my mobile from an unknown number as I sat in my car.  Assuming it was from someone trying to sell me something I almost didn’t answer; when I did, the voice in my ear sent me swooping back in time and although it was a warm day I broke out in a cold sweat.

It was Martha, a wonderful Zimbabwean woman who lived with and cared for my dad during the last three years of his life when he was bedridden, unable to speak and fed by a tube in his stomach.   Hearing her again reawakened the stresses, fears and sadness that had enveloped me every time this kind, gentle woman called me up.

Despite several attempts in the years since dad died I had never managed to contact Martha, so this was the first time I’d heard her voice since his death.  Its lilting, accented cadences, combined with the way she called me “Pippy” (no one else ever does) pitched me into my past, hurling me back into the most difficult time of my life.

It sounds dramatic when put like that.  But I have considered my words carefully.  My elderly parents took many years to die.  Mum, who had dementia, lived in a nursing home close to dad’s flat.   For me, it was an agonising, drawn-out decade as I experienced constant worry, grief, frustration and a never-ending sense of loss.

Now, when I talk to people who are in the throes of looking after loved ones I am all too aware of what they are going through.  And sad as I am that my parents have died, I breathe a sigh of relief that, for my family – for the moment at least – those times are over.

I didn’t even consider myself a carer; it was dad’s social services manager who told me I was.   I didn’t perform the numerous, daily intimate tasks for dad that Martha did.  I didn’t sleep in the room next to his, listening out for his bell.   I didn’t top up his feeding tube or replace his catheter.

But I spent hours talking to doctors, nurses, lawyers, carers and care agencies, care home managers and staff, NHS and social care employees of all ranks, bank managers and equipment providers, sorting out issues, arranging appointments, cajoling and complaining, buying and explaining, applying for and ultimately securing (after lengthy appeals procedures) NHS funds for both my parents.

And of course I visited them as often as I could.  The emotional turmoil was unrelenting, and often vented on my long-suffering husband.  Such is the lot of the seven million family carers in the UK, even one operating at arm’s length, like me.

The distance of time lends perspective.  Looking back, I see that slowly but surely you begin living two lives: your normal, everyday pre-carer’s life centred on your own family, your own work, your ups and downs; and your carer’s life, focussed, by definition, on those for whom you are caring, on their needs and worries, their (in my parents’ case) virtually constant lows and very occasional highs.

The two orbits in which the carer exists are inexorably linked.  I wasn’t good at Maths at school but I remember Venn diagrams with their overlapping circles, and they remind me of how it was for me in mum and dad’s closing years.

Now that I write so much about elderly people, their care and dementia, I frequently encounter (either on social media or in the flesh) individuals who look after loved ones not at a distance, as I did, but in their own homes.  Their selfless devotion floors me; it humbles me as little else can.  The circles of their particular Venn diagrams are not so much overlapping as overlaid until the carer’s life is all but hidden under the life of his or her charge.

Researching a piece about Admiral Nurses (specialist dementia nurses who support the families of those with the condition) I received, late one evening, an email replying to some questions I’d posed a man in his 60s who lives with and cares full-time for his elderly mum who has Alzheimer’s.

In answer to how he saw the future the man said he’d recently told his Admiral Nurse: “When all this is over I am thinking of changing my identity – new name, new place to live , even thinking of buying a wig. Disengage with the old me and reassemble someone new. Crazy, I know, particularly at my age.

“All in all, the future does not exist, so why think about it at all. If you had asked me ten years ago what the future might be I would never imagined what has happened. Que sera, sera”.

His email was heart-breaking; his words stirred up in me the swirling emotions with which I had lived for so long, albeit not as intensely as him.  And again, I felt a sense of relief that all this was behind me.  It is sobering to think that three in five of us in the UK will be carers at some point in our lives.

In truth, it had never been anywhere near as bad for me as for my selfless interviewee.  Unlike him, I could walk away and regain, if only for a day or two, my old life.  Though even for me this wasn’t always possible. When and where the two circles of a carer’s Venn diagram overlap isn’t in his or her gift.

One weekend, as mum and dad’s health continued to worsen, my husband and I packed our young daughter off on an extended play date and went to visit old friends in Derbyshire.  It was to be two days of relaxation away from it all.  We were met with a glass of Champagne.  After the first few sips I felt my shoulders drop, I chatted, laughed, began to feel my old self.

And then my mobile went off.  It was Marius, a Polish lad who had been dad’s first unofficial carer and now usually called only when things were going wrong.  As soon as I heard his voice I was swept back to my father’s flat in Surrey, to illness, doctors and distress.   In fact, Marius wanted to plan a short trip for dad in his car – it was a delightful offer, the sort of human kindness that makes you want to weep.

Which was what I did from that moment on.  The entire weekend.  I couldn’t stop crying.  I kept trying to pull myself together, forget about mum and dad with their haunted eyes and their old, broken bodies which had once cradled mine.  But I couldn’t.   At about 9.30pm I slipped away from the dinner party thrown especially for me and my husband and took myself to bed.  When I later sought counselling (something I recommend) I discovered that I had been suffering from anticipatory grief.

On the train home from Derbyshire, I resented the fact that my carer’s world had exploded into my own world – and immediately felt guilty for doing so.  Guilt, in those days was my perpetual, unwanted companion.

All life is a juggling act.  We never know how many difficult issues other people have to contend with.  Caring for someone you love, watching them suffer, is fraught and complex – and none of us choose it.  What I now know is that the experience never leaves you.  Hopefully it made me a better person: it certainly changed me forever.


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Alfred Barlow’s Medals

When I heard of a blind Second World War veteran’s appeal for the return of his lost medals I was very moved.   Alfred Barlow, who took part in the D Day landings, was on his way back from visiting Normandy with his family when he realised that all four of his medals had gone missing.

Now, in a gesture to warm the cockles of the coldest heart,  Stockport collector David Byrne has replaced Alfred’s full set of medals for his 96th birthday (on 25 June).  “It was the best present I could wish for,” the veteran said.

Alfred was just 24 when he landed on Sword Beach, the third and final Allied landing of the Normandy coastline.  His wartime service earned him the 1939-45 Star, the France and German Star, the 1939-45 war medal and the Palestine Medal.

His family discovered the loss when they stopped at the Norton Canes services on the M6 Toll near Burntwood on Thursday 8 June and the story sparked a wave of media interest.  The actor Hugh Grant is reportedly offering £1,000 to anyone who returns them, anonymity granted.

In a tearful television interview Alfred described how his medals were much more than pieces of metal – they were recognition of his part in the war.  “I want to be able to pass them onto my grandson,” he said.  “I want them back – they mean so much to me”.

I understand the Stockport grandfather’s distress because I know how much my dad’s Second World War medals meant to him, though like so many men of a certain age, he never said so.

I knew – because mum told us children – that dad’s war robbed him of his faith.  He only attended church once a year on Remembrance Sunday, and in the weeks leading up to the eleventh hour of the eleventh day he’d stand for hours in the rain selling poppies.  We owe so very much to the Alfred Barlows and Arthur Kellys of their generation.

My dad Arthur Kelly & his Second World War medals

In 2005, as part of the BBC’s WW2 People’s War– an archive of memories to celebrate the 60th anniversary of the Second World War – I translated and posted a story that dad had originally written in French.  He never lost his love of learning and after he retired he attended French lessons; asked to write an essay entitled “24 Hours I Will Never Forget”, he chose to write of his experiences at the Siege of Tobruk.

I remember stopping in disbelief, slowly taking in what I was reading – and what dad (my cautious, risk-averse, civil servant dad) had seen and done – then trying to turn it into English using my shaky A level French. You can still read the account here; it’s pretty powerful stuff delivered in the dry, understated tone of someone who would never in a million years have considered himself brave.

In his last years my dad was confined to bed, unable to speak or eat, fed by a tube in his stomach and looked after by two live-in carers – yet he never quite lost his love of socialising.   Even when he couldn’t chat, he lived for visitors.

His remaining British Legion colleagues (many of them had already died) would frequently stop by at his flat, sit beside his bed and reminisce about the war.  If I happened to be there, I saw dad’s eyes light up, his head move in what passed for a nod, his hands tap at the bed as he tried to join in.  It would be hard to describe him as animated, but in his last months he certainly felt a strong connection with his fellow veterans.

He didn’t have dementia as mum did, but towards the end dad too began to live in the past.  He kept his medals in a drawer beside his bed and every month or so one of us would take them out to polish them.  Only then, as he looked at them, as I placed them in his hand so he could feel their weight, did I start fully to appreciate what they meant to him.  Dad was awarded the Burma Star, the Africa Star, the 1939-45 Star, the Defence Medal and the 1939-45 Medal.

One of my last, favourite memories of my father was when the two of us, along with a young Polish friend who often helped us out, went to church on Remembrance Sunday.  It was about two years before dad died and we just about managed to get him to our picturesque local church in Surrey (where he and mum had married 60 years earlier) in his wheelchair.

His gleaming medals were proudly displayed on his chest and after the service a young woman, a stranger, came up to dad, leant down a little and quietly said, “Thank you”.  Just two words.  For a moment I couldn’t think what she meant.  But dad knew and his cloudy old eyes teared up.  It was very touching moment and I later included it in a short story that appeared in the Sunday Express magazine.

When our father died and my siblings and I shared out his things, I asked for his medals.  Five ribbons, five pieces of metal.  One war.  An irreplaceable dad.   David Byrne’s birthday gift to Alfred is very special; it restores one’s faith in human nature.    I still hope though, that if someone finds Alfred’s own medals he or she returns them.   It would make the end of an already heartwarming story, pretty near perfect.

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The Debenham Project

It must be pretty obvious now that I love stories – telling them, writing them, reading them and most of all, discovering them.  The other day as I was researching something else (my ability to wander off course is legendary in my family), I stumbled across a corker.

It begins eight years ago in Suffolk, where “local” is considered anywhere within a four mile radius, this distance being rather brilliantly defined as “halfway between here and somewhere else”.  It was February 2009 and a handful of church elders in the village of Debenham decided that they – the “four mile” community, the 6,500 residents, the locals – should try to support those of their families affected by dementia.

It ends with a truly dementia-friendly place in the very best sense of the phrase.  In the words of Lynden Jackson, a man pivotal to the story, with a “dementia pro-active community”.  So, how did it happen and what can we learn from this heart-warming tale?

The aims of what is now known as the Debenham Project weren’t high-flown or complicated; they were simple and clear.  Of the roughly 200 frail, elderly people in the area, 42 per cent were thought to have significant dementia symptoms and 110 people previously living in Debenham had moved into residential or nursing care more than four miles away.  This meant, so the thinking went, that 110 elderly individuals had had to leave their partners, relatives, friends, neighbours because they couldn’t be cared for in their own community.

But why should they?  The church elders, mulling over the issue, asked themselves why these people with dementia couldn’t be cared for where they live, in familiar surroundings amongst those they know.  To this end – and without having any real notion of where it might lead – they organised a public meeting.  It being England, and Suffolk, and April, the night turned out to be miserable and rainy.  No more than a handful of folk were expected to turn up.

More than 70 people came; it was standing room only.  And that evening, the philosophy, foundations and guiding principles of the Debenham Project were hammered out.  I believe that these beliefs represent the way forward not just for this Suffolk village but for all of us – because they represent the very best model of community-focussed dementia care.

First and foremost, it was decided that the Debenham Project should be just that: a small, local, community scheme, operating at the grassroots, benefitting, owned (this is important) and implemented by people motivated to offer their help to those they know.

Other principles included the avoidance of bureaucracy; concentrating on what could be done (within four miles), not stressing about what couldn’t; focusing on the family carer because a) it is usually him or her who takes the brunt and b) by supporting the carer you support the cared-for, and vice-versa.  My sentiments entirely.

The project’s philosophy can be summed up very neatly (as it is on its excellent website) as follows: make it local, make it simple, make it work.

In October 2009, the Debenham project was formally launched to an audience of more than 150, with the collaboration and support of, among others, the mental health trust, adult care services, three major charities, the library, the church, the post office.  In the six months since the damp April meeting, an advice and information centre had been created, a friendship group for the elderly had been adapted to form an activities and social hub, the first Food ‘n’ Friends lunch club held, a website created and a confidential telephone helpline set up.  As Lynden (the project’s chairman) says, it was all pretty rudimentary and fragile – but it was there.  It existed.  It worked. It helped.

As the years have passed the project has evolved and matured, with the addition of activities such as the Carers Club and Info Café, the Fit Club and Debenham-on-Call (an informal network of trained volunteer carers ready to step in at short notice), an up-to-date register of local professional care and domestic help, a community transport network, a small relaxation therapy group, a Way Back When reminiscence group and (by working closely with Norfolk and Suffolk NHS Foundation Trust) specialist memory and support services with trained volunteers accompanying individuals and their carers to appointments.

Some offerings, such as the confidential telephone line and the local diagnostic clinic have been superseded by statutory agencies.  The project doesn’t believe in continuing to deliver services that can be better provided by others.   While some aspects – such as the academic, educational and training experience of professionals critical to the care of an ageing population – are simply beyond its scope.

The secret of the Debenham Project’s success is that instead of the traditional structure of a top-down hierarchy in which volunteers support professionals working to a generally rigid framework, the community “owns” its project, only calling in expert help if and when necessary.  The whole thing evolves and works from the bottom up, not the top down.

As Lynden says, “We believe that this is the only way that truly person-centred care can be delivered – caring for the community, in the community, by the community”.  He could have taken the words right out of my mouth.

Because it is so rooted in the community, because people – neighbours, friends, families – are constantly talking to each other, the project and its trustees (who are all also volunteers involved in the week-to-week running of the activities and services) have deep personal insights into what is wanted.

For example, newly diagnosed individuals and close relatives want information about how the condition will progress.  But, as Lynden says, “Really, when it comes to it, they want reassurance that they are not alone, that there are so many who have followed their journey and who will try to be there for them”.  A message I frequently hear.

The project is entirely volunteer-based and now has over 100 volunteers, including more than 50 regulars devoting an average of half a day per fortnight – the cost is therefore small: an average of £8,500 or £85 per annum per family living with dementia (a little more than £1 per head of the population in the four mile area).

In 2015 in Suffolk there were an estimated 11,000 people with dementia, which means in total about 20,000 people (the families of those with the condition) are affected.  Yet at that time the sort of post-diagnostic support offered by the Debenhams Project was limited to about 1,100 two-hour sessions for a carer or their loved one per month (less than half a day a year throughout the county).  So, as Lynden says, “We urgently need to double, triple, quadruple, the capacity of community-based activities, services and support – and then do it again!”

Others, far more qualified than me, agree.  The project has won local, district and UK awards and been written up in the influential Journal of Dementia Care.  The Social Care Institute for Excellence (SCIE) included the project (p28) as an example of best practice in its online guide on home and community care for older people.

Since 2015 the need for community-focussed dementia care has increased, not just in Suffolk but up and down the UK.  As Lynden told me, “Fine words butter no parsnips”.  The time has come to convert into action the tremendous goodwill that has been highlighted by national schemes such as the Dementia Friends initiative.

The Dementia Project does this in spades.   It shows what can be achieved when a community decides to just get on and do it – and makes a real difference.

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Losing The Fear

It’s only fair to say that when I heard that a man had slept next to his dead wife’s body for six days I felt a bit squeamish.   But earlier this week – Dying Awareness Week as it happens – I heard a wonderful piece of radio that challenged my reaction and made me rethink.

On Radio 4’s PM Programme, Russell Davison spoke eloquently of how he and his children had lovingly cleaned his wife’s body, placed her in the wicker coffin they had chosen together and bought online; he described how he had kept her with him in their bedroom as he grieved for her and said goodbye.  It sounded the most natural thing in the world as the 50-year-old man recounted the experience.

Listeners could hear interviewer Eddie Mair’s slight awkwardness as the two of them talked, his nervous laughter (and quick apology) as Russell explained how his wife Wendy lay down in the coffin to check it was the right size. “This was how we embraced death Eddie.  We weren’t afraid of it at all.”

And that, really, was the crux of it.  They weren’t afraid.  Russell said that he and Wendy, unlike so many of us, talked about death at length.  I’ve written about the unholy alliance between silence, stigma and fear – it exists as much, if not more, around death as it does around dementia.

But to return to the interview.  I mentioned Eddie Mair’s response to Russell’s words, not to criticise him – far from it.  Earlier this spring Mair conducted some truly outstanding interviews with his dying BBC colleague Steve Hewlett.   No, the strength of Mair’s conversations with both these men lay in their rawness and truth.  When confronted with the subject of death at a personal level we all tend to hesitate and search for words.  How powerful then to hear an experienced broadcaster hesitate too.

Russell’s 50-year-old wife Wendy, who had been diagnosed with cervical cancer a decade ago, did not fear death.  “Taking that fear out of the equation was such a huge boost,” her widow said.

I am not sure I will ever get to that stage, however much I wish I could.  One of the worst things about my own father’s lingering death was seeing the fear in his eyes during his final months.

Russell, who had seen a few dead bodies in his time (his father’s, grandparents and other relatives) appreciated that while some of their friends and family came to see Wendy as she lay in her coffin, many of them had not and were too scared.   He reasoned that they only had Hollywood and television’s sensationalist portrayals of zombies and ghouls to inform them.

For Russell though, having his wife and his boys’ mother lying next to his bed, was quite normal.  “It was just Wendy”.   Even when her body began to deteriorate the family viewed this as natural, as nature’s way of showing them that their loved one’s body was slipping away from them.

By the end of the interview I had learnt a lot from this Derby man.  I remember how close to my mum I felt when I embraced her still warm body after she died (I’d missed her passing by minutes).  I later wrote that after all that her dementia had done to her “she was more my mum in those weighted, precious moments of grief and loss than she had been for a very long time”.  A few years down the line, I am more certain than ever that this was true.

I thought of Eddie Mair’s interview with Russell when, later the same week, I participated in an interesting discussion at London’s Soho Theatre on how we as a society might start a conversation about the realities of growing older and mortality – and whether it is our inability to confront those realities that stops us, both as individuals and as a nation, from planning effectively for our later years.

I won’t go into the debate now, except to say that my answer to that particular question is yes.   Of relevance here is the intervention of a young audience member right at the end of our discussions wondering – in the lovely, laid back manner of youth – whether he could make a conceptual point.

Is it, he asked, the link we make between old age and death (which we fear) that leads to our inability to confront and plan for old age?   I was still pondering this and marvelling at youngsters’ unfailing ability to come at things differently (we more mature contributors had been grappling with the nitty-gritty of state funding, the compression of morbidity and housing equity) when one of my fellow panellists did what I should have done and heartily agreed with the assertion.

Remembering the look in my dad’s eyes as death approached in the last few months, I wonder if it had been this inherent fear that prevented him from moving house when he knew he should.  Mum’s dementia meant she refused to leave a family home which, located as it was on a very steep hill, was patently inappropriate for two frail people in their 80s.  Dad’s mind was still sharp; he knew what they had to do. I thought he hadn’t the strength of will to face up to mum (who always wore the trousers in their relationship) but maybe he was simply too frightened to confront the realities of his and mum’s mortality.

I won’t ever know, but Russell and Wendy were right to talk about her death, to confront it, embrace it as they saw fit.   Russell told the Independent newspaper that our society has become petrified of death whereas other cultures would see what he and his family did when Wendy died as perfectly normal.  It certainly made me stop and think.  About death.  In a good way.





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Creative Ageing

Over the past few months London has played host to a clutch of plays about old age, death and dementia.  Not the jolliest of topics, but as they are precisely what I write about, I went to see each one.  They were all very good.  What really intrigued me, however, was the youth of their creators.

The Lounge, currently playing at the Soho Theatre

The oldest have just nudged into their 40s, while the youngest, Matthew Seager, writer and star of In Other Words – a deft exploration of dementia – is a mere 25.  So, what on earth attracts these relative fledglings to subjects from which society (even its more mature members) often shies away?

The answer, according to 41-year-old Lucinka Eisler, who plays the lead in The Lounge, currently at London’s Soho Theatre, lies in theatre’s ability to overcome our “imaginative failure”.  Certainly, The Lounge, In Other Words and Florian Zeller’s The Father – a powerful play about dementia that last year pulled in packed houses to the West End – all achieve this.

“We don’t imagine ourselves, or talk about where we will be, in 20, 30, 40 years’ time” Lucinka tells me.  “As artists we began to wonder what we could contribute to the debate about why we in the UK are so unprepared for old age and death”.

Their answer, prompted by the death of two of the company’s grandparents and produced after in-depth research (aided by a panel of distinguished scientific advisors) is a quirky, quick-witted play charting a 97-year-old woman’s last day.  Set in a care home, it highlights the terrors, invisibility and loss of old age, the divisive “them” and “us” labels that society imposes.  Yet The Lounge is ultimately hopeful, revealing the strong human instinct to form bonds, no matter how unlikely.

Matthew Seager

In Matthew Seager’s debut play, In Other Words, he and his equally young co-star Celeste Dodwell age before our eyes (sometimes within seconds) from love-struck youngsters Arthur and Jane to a frail, elderly couple.  It is riveting theatre, requiring acute observation and extraordinary acting.  Their lives, including Arthur’s developing dementia, are played out to the soundtrack of their favourite song, Frank Sinatra’s Fly Me To The Moon.   

Matthew told me he was inspired to write In Other Words, which played at London’s Hope Theatre earlier this spring, when studying for his degree at Leeds university.  Researching applied theatre and care homes, he explored each of the senses with people with dementia and played music at the beginning and end of each session.  He was amazed at its effect.  “People who couldn’t communicate at all would stand up and sing along. I remember wondering how I didn’t know about this and thinking that one day I should do something with it”.

“I realised I was ignorant about dementia, about how severe and shocking it could be. I thought, no one knows about all this and how incredibly powerful music is.”

Already the toast of literary France for novels written in his 20s, 18 months ago Florian Zeller burst onto the West End with his drama, The Father, about an elderly man in the throes of dementia.  In a disturbing and powerful piece of theatre, the audience is taken into André’s mind, sharing his confusion, frustration and fear.

Unlike Matthew Seager, Zeller (32 when he wrote The Father) had no ambition to explore dementia per se.  “I wrote the play the way one has a dream,” he told the New York Times last year.  “That is to say, unconscious of where I was going.  It wasn’t until almost the end that I said to myself, ‘Ah, that’s what I was talking about, about senile dementia, about the moment when one loses one’s faculties, one’s sense of who one is”.

Zeller’s words answer my opening question.  Young dramatists are drawn to explore old age because they are interested in people, in individuals in all their idiosyncratic, individualistic glory, regardless of illness, condition or age.

If the life in question is long, encompassing times that many of us have never known – the Second World War, food rationing, a life before computers, mobiles and Ipads, when only the rich boarded planes or travelled abroad – it is all the more appealing to young, creative brains whose medium of choice is the theatre.  A medium which, according to Lucinka Eisler, is best placed to shift our imaginative perspective, challenge our mindset and overcome our reluctance to talking about old age and death.

Given the increasing numbers of elderly people in the UK, the frequent failings in their on-going and end-of-life care and successive Governments’ inability to come up with meaningful solutions, the arrival on the London scene of young playwrights keen to make a drama out of this particular crisis is to be heartily applauded.


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The Magic Of The Mede

Maggie, Roger, Charlotte and John enjoy a well-deserved break while helping at Lower Halsdon Farm

At the end of a small cul-de-sac in the charming town of Topsham, Devon sit three modest bungalows.  Only their location – each has stunning views over the estuary – hints at the magic within.  For together they form The Mede, a holiday home-cum-day club for people with dementia and their families, created by Sallie Rutledge, a former nurse whose own family was touched by the condition a few years ago.

As soon as you walk through the door – whether of the two holiday homes or of Seaward House (where those with dementia can attend a day club and, if they like, stay over with a dedicated carer) – you enter a delightful, always friendly, home-from-home, complete with resident terrier, Satchmo.

I stayed at Seaward House recently and it’s clear that, as ever when it comes to excellent dementia care, the secret lies with the people, starting with Sallie – a big-hearted woman with the determination, courage (and family support) to turn her vision into reality.

Having seen her parents-in-law struggle to take a break when her husband’s father developed Alzheimer’s, Sallie realised the couple were in need of a form of holiday respite together that simply didn’t exist, so she set about creating it.  When No. 7 The Mede came up for sale in 2007, she and her husband Guy bought it, moved in with their three teenage children, embarked on the necessary alterations and rented out their home in Exeter.  Sadly, by the time No. 7 was ready to open in 2009, Sallie’s father-in-law John had had to move into a residential home.

But the seed of something special had been planted, and in the intervening years The Mede – which now comprises No. 7, No. 8 (purchased in 2016 and known as The Summerhouse) and Seaward House – has developed an ethos of inclusive friendship and warmth.

Making – and enjoying! – afternoon tea at Seaward House

The afternoon I arrived eight people were sitting round the table in the open-plan living area of Seaward House playing a variety of games – it turned out that four of them had dementia, the other four were carers or volunteers.  But this was irrelevant.  What mattered was the chat and laughter, the endless cups of tea, the delicious smell of freshly baked biscuits and, through the large picture windows, the expansive, ever-changing view of the Exe estuary.

Sallie explained how The Mede has evolved from holiday homes offering respite to flexible, individually tailored packages, ranging in price from about £70 for the day club to £105 for one-to-one day care and £130 per night for an overnight carer. The half a dozen carers are self-employed and the families of those they are looking after pay them directly.

“Couples would come to stay and the husband or wife might visit Exeter while we offered “sit in” services of up to two to three hours for the person with dementia, but this was a relatively short period so we decided to develop things further”.

Now Seaward House, which opened in 2014, hosts its activity day club from 10-4pm Monday to Thursday, thus giving family carers a decent stretch to themselves – and, if their relative is staying over, the possibility of a few days to recharge their batteries, sound in the knowledge that their loved one is being well looked after.

Two Men And A Boat – John and Roger take to the water

The Mede’s Facebook page gives you a glimpse into its wide array of activities – from trips to Powderham Castle and Lower Halsdon Farm (where some of those with dementia recently helped to spruce the place up for summer), to trips to The Mede’s nearby allotment and its beach hut in Exmouth.   Celebrity chef Orlando Murrin regularly comes to cook with the help of club members, while local business people such as Geoff and Anna Bowen of Topsham’s Pebblebed Vineyards give talks.

“There is usually a lack of facilities for people when they are first diagnosed, which is exactly the time when activity and stimulation is required”, explains Sallie, whose passion for what she does is clear the moment you meet her. “Our main priority is to treat the members with dignity and tailor the sessions to their individual requirements”.

Suzy Webster’s parents, Barbara & Gordon Wilkins 

Suzy Webster’s 70-year-old mum (who, together with her husband, lives with Suzy and her family in Chepstow) was diagnosed with dementia five years ago.  They have all stayed at The Mede several times and have already booked this year’s break.  “The reassuring kindness and practical support gives us the opportunity to enjoy time together again and create memories,” Suzy tells me.

Maggie Groves, Sallie’s second in command, used to work in Devon county council’s social care department and joined The Mede two years ago.  She brings with her a wealth of knowledge about local authority bureaucracy and is the perfect foil for Sallie who, as she herself says, is a big picture person.

The relationship that Maggie, Sallie and the dozen or so occupational therapists, carers and volunteers have with those with dementia is very much like that of friends looking out for each other.  “We get to know the families so well here.   Boundaries can become blurred but as professional we know where the boundaries are,” Maggie told me.

A small vignette summed up The Mede for me.  It occurred when Alan, a guest staying at The Summerhouse, participated in the day club at Seaward House but then, due to his dementia, he began talking incomprehensibly over the other members.  Within minutes, Maggie gently and quite naturally suggested to Alan that he come to the shops with her and the couple set off, leaving the rest of the club to their chat and activities, guided by occupational therapist Sara Cross.

Later, walking into Topsham, I bumped into Alan and Maggie.  Arm in arm, they were strolling up Fore Street on the hunt for a vinegar bottle.  They’d called in at their favourite local cheese shop and now, frequently stopping to chat to familiar faces, were making their way back for lunch.

It was person-centred care made manifest.  Human connections being made, life being lived – well – by someone with quite advanced dementia.  Alan, conducting an imaginary orchestra with his free arm, was happy as Larry.

The Mede’s familiar homeliness, combined with its high staff ratio and wealth of activities on offer, make it exceptional.  It is home from home for everyone who enters it, whether or not they happen to have dementia.   It’s simple, really.  It is also pure magic.

Sallie and her daughter Lucy, who volunteered at The Mede for a while


You can contact Sallie Rutledge and find out more about The Mede by calling 07718 976 072 or 01392 421 189 or emailing her at 

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In Other Words

Matt Seager & Celeste Dodwell in IN OTHER WORDS

Fly me to the moon
Let me play among the stars
Let me see what spring is like on
Jupiter and Mars
In other words, hold my hand
In other words, baby, kiss me

Written by Bart Howard, 1954

Matthew Seager’s debut play IN OTHER WORDS distils dementia – what it is to have it, what it is to watch someone you love become lost to it – into 75 minutes of riveting drama.   Playing in the intimate confines of Islington’s Hope Theatre, the two hander pulls its audience into the emotional turmoil that unfailingly accompanies this cruel condition.

We meet Arthur and Jane when they are young and in love, the soundtrack to their lives is composed of Frank Sinatra songs, the mood is upbeat.  In the space of a few seconds, the pair age in front of us.  Arthur, played with haunting conviction by the 25-year-old Seager, crumples into his chair, his eyes take on the empty stare of someone in the advanced stages of dementia.  The music stops, abruptly.  A clock ticks.  Life goes on but the lovebirds’ world has irrevocably changed.

Matthew Seager

When I talked to Matthew before his play opened, he told me he’d been inspired to write it after working in sensory stimulation workshops in a dementia care home during his drama studies at Leeds University.  He vowed then to do something with the powerful scenes he’d witnessed as people who had long lost the power to speak were able to sing the words of old, familiar songs.   It was while continuing his training at the prestigious Royal Conservatoire of Scotland that he began working on IN OTHER WORDS.

Throughout this intense production, deftly directed by Paul Brotherston, the couple – with virtually no props (two wingback armchairs and an old-fashioned floor lamp) and a scattering of evocative songs – switch between life before, and life after, Arthur’s condition takes hold.

Celeste Dodwell, who plays Jane in a skillfully nuanced performance

A young Celeste Dodwell (as Arthur’s wife Jane) gives a nuanced performance that is wise beyond her years.  She portrays a woman driven to anger by her husband’s erratic, paranoid behaviour, yelling at him one minute and clinging to him for support in the next.  The ups and downs, the giving and taking, the flaming rows and never-ending confusion and grief of a married couple experiencing dementia together are brilliantly conveyed and show, in all its brutality, the impact of Arthur’s diagnosis on them both.

The saving grace is “their song”.  Sinatra’s “Fly Me To The Moon” never loses its magic for Arthur, and when things get too much – when, as Arthur puts it, “It feels like I am breaking” – the tune’s familiar phrases and rhythms pull him back from the brink.  At times, the repeated playing of the once-loved music is too much for Jane: she loves it and loathes it. “It’s one of the only things that reminds me it’s him”.

There is, as I well know, an almost unbearable poignancy to those flashes of the person as they used to be. Inevitably, for Arthur and Jane, it comes when they hold each other in their arms and dance to their song.  “It’s those moments,” Jane says, “Those tiny moments that you have to fight so incredibly hard to get through”.

Anyone who has (or has had) a loved one with dementia will find this play difficult to watch.  For the packed and largely young audience it seemed to be an eye-opener. When I spoke to one or two of them afterwards their comments centred on Jane and how hard it was for her.  As observers, I suppose we inevitably relate more closely to Jane than Arthur, a man lost in his own frightening world.

I am always amazed when young people without any personal experience of dementia instinctively grasp its complexities, its impact on those who have it and those close to them, and then – perhaps with the fresh exuberance of youth – determine to do something with what they’ve discovered.   What Matt and his company, Off The Middle, have done with their combined creative talents is remarkable.  They have opened up the subject of dementia and explored it through one, short powerful play produced with limited finances and resources.  It is an impressive achievement.

My only slight quibble is that we know little about Jane and Arthur other than that she’s an Australian.  What jobs did they have, what happened to their careers when Arthur developed his condition, did they have children and, if so, where are they?  Having said that, this is a love story told through rapidly fading memories; it is about emotion, the devastating effects of dementia and the extraordinary power of music to connect.

The play ends where it began, with Arthur hunched in his wing-backed chair.  Slowly, Jane pulls out an Ipod and tenderly inserts the little white buds in his ears; Arthur’s feet start tapping, his face tips up and he begins to smile.  Wrung out as I was after watching this clever, raw and often harrowing drama, I smiled too.


IN OHER WORDS is produced in association with the Alzheimer’s Society and Playlist for Life, a charity dedicated to bringing the benefits of personally meaningful music in dementia care to as many people as possible through the use of Ipods.

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The Blame Game

My mum, who had dementia, lived the last seven years of her life in two nursing homes.  The first was carefully chosen by dad, vetted by us three children and considered the most loving environment of those on offer.  As many people do, we found ourselves chasing a care home place in a crisis – it was the ultimate “distress purchase”, chosen when mum was admitted to hospital (she was very nearly sectioned).

The home stood in a pretty, well-kept garden at the top of the town where my sister and I had been to school.  Sheep grazed on nearby slopes and it was, we all agreed, as good as it gets; once mum settled in she seemed content and well cared for.

Four years on, quite out of the blue, not long after dad died and a week or so after I’d finally won state funding for mum, I received a phone call to say that mum’s home was being investigated, the police were involved, her name would come up in court as a person “without capacity” and she would need to be moved.  Life was like that at the time.   I never knew, from one moment to the next, what might happen.  Stress?  I’ve never known anything like it.

So for her last three years, until she died in 2012, mum lived in a different home from that carefully chosen by us.  In the same town, this one was modern and purpose built.  Mum had a room on its dementia floor; by this time she barely spoke and was confined to bed.  None of us children liked the fact that mum had to be moved, that her new carers had never known the “old mum” – the “almost mum” she’d been when she’d entered her first nursing home – but as so often for family carers, events were beyond our control.

I didn’t visit as frequently as I should.  I was worn out from years of supervising dad’s care from 30 miles away (ill as he was, he was adamant he wanted to remain at home), I found it difficult to see mum as she’d become and I never really knew what to do or say when I was with her.  Besides, my daughter was still young, my London life hectic.  You know the score.  It’s no excuse; it’s simply how it was.

When I did visit I remember feeling anxious because a fellow resident often wandered into mum’s room.  He was living with moderate dementia, uttering seemingly unintelligible words and phrases, and it worried me that he was allowed to stroll through mum’s open door because she was so unaware and – should it come to it – so utterly defenceless.  I took it up more than once with the nurse in charge of mum’s floor.  I was always polite, but I bet my anxiety made itself felt pretty firmly.

I knew, even as I complained, that my times with mum were fraught, charged with a combustible combination of grief and guilt.   But it was only recently that I stopped to consider the psychological minefield that care home staff must navigate as they balance their residents’ complex needs with the tangled, competing emotions of their relatives.

It happened when I visited Surbiton’s Royal Star and Garter Home, which has a forward-thinking dementia care philosophy that places residents’ feelings at its heart and takes an individualised, person-centred approach.

Under the guidance of Sally Knocker of the specialist consultancy Dementia Care Matters, the home creates detailed histories of residents with the condition.  What really struck me – apart from the extent of my own ignorance of dementia when mum had it – was something said by Pauline Shaw, director of care and service development for Royal Star and Garter Homes.

She mentioned how tricky it is for her staff to deal with the guilt of residents’ relatives while also ensuring the best for everyone in their care.  To illustrate her point she described how residents’ doors are left unlocked so that they can roam freely – I nodded to show I agreed with the sentiment behind the policy.  But this, Pauline continued, sometimes leads to relatives complaining when other residents wander into their loved one’s room.  I nodded again.  That complaining relative had been me.  Of course I was entitled – and probably right – to voice my concern, but what I was also subconsciously giving vent to, I now see, was guilt.

This guilt was a heavy, personal burden accumulated over many years and involving misunderstandings and rifts between mum and me.  At this point our already complicated relationship was further clouded by the fact that because dad had, unlike mum, remained in his own home, I’d devoted far more time and energy to him.   Dementia, when it comes, doesn’t exist in a vacuum, or even in one person, but in the messy, tangled busyness of everyday family life.

On its website, the Social Care Institute for Excellence (SCIE) says that people sometimes assume that when a person with dementia moves into a care home this will largely resolve the stress of caring, but often this isn’t true.  “In fact this may leave the carer with feelings of guilt or a sense that they have ‘given up’.  This in turn may make them critical of the care in the care home”.

From 2013-14, John Kennedy, a former director of care services, conducted an inquiry into care homes in which he concluded that a “deeply engrained feeling of guilt is behind much of our struggle around care homes”.  I agree.

So much so that in 2013 I wrote a Thunderer column for the Times in which I reflected on how society responds to the care homes crisis.  Was it, I asked, by calling for tax increases so we can afford to pay care workers decent wages?  Or was it by saying we’ll have granny to live with us? I concluded that it was neither. Therefore, I argued, we had little excuse for moaning, but some reason to feel guilty.

Kennedy takes my argument one interesting step further.  He says we’re ashamed of not looking after our older citizens.  “We need to grow up and get over it, or take grandma home and care for her ourselves.  What we must stop doing is projecting our guilt on to care homes to make ourselves feel better”.

I recently contributed to a Hull University project looking into how we in today’s society memorialise our loved ones – including, as in my case, someone with dementia.  I concluded that, with my growing body of writing about mum, I am truly re-membering her, re-collecting her, piecing together in my mind the woman she was without her dementia, and paying tribute to her.

As so often when I write, the process reflects back on me.  I know I’m always harping on about the guilt I feel over my various shortcomings when caring for my parents.  But this aspect of my guilt – this unrecognised projection of an always dangerous emotion onto the care workers in mum’s home – is a new one on me.  It’s made me stop and think – and write.  Again.


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Life Stories Written In Invisible Ink

As some of you may know I’ve just had my first novel published; I’d like to thank everyone who has said kind words about it and generally supported me in all kinds of ways.  Publicising Invisible Ink, writing and talking about it, I’ve come to it afresh and gathered one or two insights into dementia, the condition that plays such an important part in my life now – and has a small but vital thread in the plot of my book.

Invisible Ink tells the story of London lawyer Max Rivers whose seemingly successful life belies the crushing sense of guilt he feels over the disappearance of his younger brother Peter when the two of them were schoolboys.

To bring out Max’s jealousy of his little brother, I wrote about Max laying Peter a trail of clues, each one successively harder and riskier for his sibling to find.  I then decided Max should write the clues in invisible ink, something I used to do as a child.  It was only with hindsight that I realised that invisible ink made a great metaphor for Max’s past which, try as he might to make it disappear, he can never truly escape. I knew at once that I’d found the name for my novel.

Steeped as I now am, in writing about dementia and the importance of maintaining an individual’s identity, I realise that everyone’s life is, in a sense, written in invisible ink.  We are all, like Max, shaped by our past; but only people who have known us for a long time know our history and fewer still knew us as children.  Last year I met up with schoolfriends I’ve known for 46 years.  It felt like coming home.  We all said how comfortable we felt in each other’s company.  We knew who we were – and who we had been.

Should any of us ever lose the power to communicate, our pasts would be hidden from all but those who knew us then.  For people with dementia, who ultimately forsake all memory, the ink becomes invisible not only to others, but to themselves.

One of the saddest moments in my mum’s decade of dementia came when I visited her two weeks after she’d entered her nursing home and she told me she’d cried herself to sleep the night before because she couldn’t remember her life.  I used it as the basis for a short memoir, Visiting, which was selected for inclusion in an international anthology of women’s writing, When Women Waken. 

My mum’s words show why the best dementia care involves capturing someone’s history through Life Story Work, which is crucial for people who can no longer tell their own stories or voice their wishes to carers.  The Life Story Network, an organisation based in Liverpool, promotes individualised care and two years ago I was lucky enough to talk to its Chair Jean Tottie and get to know her late dad, George, through the life story book she’d created for him.

This reminded me of my own dad who, during his final years, was confined to bed and fed through a tube in his stomach. Towards the end of his life, we had to change his long-term carers. It was only when we brought some old photos of him into his hospital room as he lay dying that dad’s new carers exclaimed in surprise at how slim he’d once been.

My dad had always been fit and strong.  We cycled everywhere together when I was a child, he loved long walks and he chopped firewood well into his seventies.   But his new carers didn’t know this because it was all lost in the mists of time, written in invisible ink.

Rarely has this discrepancy between how we look (and seem) now, and how we were then, been more vividly illustrated than in an award-winning photo series by commercial advertiser Tom Hussey called Reflections of the Past, in which elderly people are shown looking at mirrored reflections of their younger selves.

The portraits are breathtakingly powerful; each one an enticing glimpse into a stranger’s long and intriguing life – cleverly reminding all who look at them of the past that lies behind an older person’s face.  Unseen.  Unspoken.   But very much there, in the laughter lines and crow’s feet, the mottled skin and cloudy eyes.

Just as the heat of an iron reveals hidden clues written in lemon juice in my novel Invisible Ink, so the warmth of a smile, the sound of a long-forgotten song, the cadences of well-loved poems, the sight of a painting, the touch of a hand on another’s arm, can spark a human connection, even in someone whose dementia is pretty advanced.  I’ve seen it happen, either in the flesh at inspirational places such as Lambeth’s Healthy Living Club, or in videos such as this one here about John, an American Second World War veteran who served at Los Alamos.  It is very moving to witness.

So, the lesson I’ve learnt from reappraising my novel is (somewhat ironically) the age-old truth that you can’t judge a book by its cover – you need to know what lies inside the outer shell.   In that sense, an important trait of very good care is kindly curiosity – a desire to know who the other person is, what makes them tick.  Never is this more true than when caring for someone with dementia who may, like my mum, have forgotten their own life.  It’s then up to the carer to turn to the family to find out, from those who know, about a past that is written in invisible ink.

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Dementia Duty

Wendy Mitchell

Wendy Mitchell

When I heard that Wendy Mitchell had had her state funded personal independence payment (or PIP) taken away I could, sadly, believe it because I’d had much the same experience with my parents who were both denied state funding for which they quite obviously qualified.  Only after a protracted battle on their behalf did I manage to beat the Kafkaesque system; dad’s funds arrived several months after he’d died.

But Wendy’s story made me really mad because the system was penalising her for doing the very thing it purported to help her to do: that is, live independently. As Wendy herself said with characteristic humour, the clue’s in the PIP’s title.  As she also said, “the system is broken”.

Wendy, for those of you who don’t know her, is a clever, kind, resourceful 60-year-old woman who is a strong advocate for living as well as possible with dementia.  She works tirelessly to raise awareness of the condition and to help make things better for the 850,000 odd people in the UK who share her fate. She also writes a great blog.

Diagnosed with Alzheimer’s at the age of 58, she was awarded a PIP 18 months ago to help her live independently.  But following a recent reassessment the PIP – of £77 a week – was taken away.

It’s worth reminding ourselves – and more importantly the Department of Work and Pensions who removed Wendy’s PIP – what dementia (of which Alzheimer’s is the most common form) actually is.  It’s a progressive, terminal condition for which there is no cure.  Yet the person who assessed Wendy declared that over the past year and a half she had become better in various ways.

It is nonsensical.  “How can they tell me that I am better than I was when I have deteriorated,” says Wendy.

To answer her very reasonable question is to reveal much of what is wrong with the way we as a society view dementia and treat those who have it.  Too many of us (including some politicians and health and care professionals) simply don’t understand what it is or how it affects individuals.  Because of this, people with the condition are discriminated against in numerous ways and their human rights ignored.

A recent report by the Dementia Policy Think Tank describes how those with dementia are denied benefits such as Blue Badges for parking and stair lifts, are pressured into leaving work without an assessment or forced to move into a care home against their wishes.

Those with the condition are less likely to receive a diagnosis than people with other terminal illnesses and, once diagnosed, face greater difficulties accessing care and support services, partly because dementia care often requires means-tested social care rather than free NHS care.  Cynics, not unreasonably, call this the hidden dementia tax.

Earlier this year an Alzheimer’s Society survey revealed that those with dementia can stay in hospital seven times longer than other patients over 65 and one in three homecare workers looking after people with dementia have no training in the condition at all. Many of those in their charge are, according to the Alzheimer’s Society, “being left terrified at home in soiled clothes, surviving without hot meals and even missing vital medication”.  The society has set up a petition calling on the Government to fix a system that is broken: so far, over 23,000 people have signed it and you can add your name here.

Yet all these forms of discrimination are already illegal under the 2010 Equality Act, which specifically covers dementia.  Moreover, in 2011, an addition to the Act known as the Equality Duty placed the onus on public organisations to ensure that those with disabilities and certain long-term conditions, including dementia, are not discriminated against.

So why isn’t this legislation being enforced?

Because dementia is only just beginning to be appreciated for what it is.  A terminal condition, not a natural part of ageing.  Only now are people with the condition finding their collective voice and making themselves heard – people like Wendy.

And irony of ironies, because Wendy paddles so hard beneath the surface, finds so many effective ways to allow herself to cope and live as rewarding a life as she can, because she speaks at Alzheimer conferences and attends meetings to help improve the lot of everyone with dementia, she is penalised and declared “better”.

What sort of society does this, or allows it to happen?  The answer is yours and mine.

I often respond to those who say that the best examples of innovative dementia care are patchy by arguing that excellence in this field is, by its very nature, organic and will inevitably start from the grass roots.  A top-down, one-size-fits-all approach cannot deal with the unique nature of each individual’s experience of this complex condition.

But when it comes to discrimination, injustice and ignorance, I change tack.  Here, the state has a role to play in enforcing the law.  It must ensure that those with dementia are treated as equally and fairly as those with physical disabilities, that they are given a chance to live independently for as long as they want and can – which will aid not only them, but all of us, both financially and socially.  We will be a more inclusive, rewarding and tolerant society that functions better.

When I was a young Hansard reporter at the House of Commons, I recorded lengthy debates on what was to become the 1995 Disability Discrimination Act.  As the Bill passed through Parliament scores of people in wheelchairs demonstrated outside the Palace of Westminster protesting at the way they were being discriminated against.

One of them was Baroness Jane Campbell, herself a wheelchair user, who explained the thinking behind their campaign in a recent radio debate.  She said that people with disabilities realised that it was not them or their condition that was the problem, but “the fact that society is not accessible and is unequal in its treatment towards disabled people”.

Now, 21 years on, we all take it for granted that buildings are wheelchair accessible, with ramps and wide enough doorways.  The protesters’ campaigns, the Government’s action, the resulting legislation have helped change the public’s perception of, and attitude towards, people with disabilities.  Of course they’re included in our day to day lives. Why on earth wouldn’t they be?

It is time for the Government to help nudge public opinion in the right direction when it comes to those with dementia, just as they did for those with disabilities.  The Government must robustly enforce the Equality Act and the Equality Duty to stop people with dementia being overlooked, forgotten, treated badly and discriminated against.

We can’t go on as we are.  It isn’t fair on Wendy or the thousands of others with dementia in this country, or their emotionally drained and hard-pressed family carers.  It isn’t right.


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Reflections on life, love & dementia

img_0661I’ve been in reflective mood recently.  My only daughter left home for university last month.  My role as a mum has changed, my nest is empty.  As I – and doubtless countless others before me – have found, at pivotal times in my parental role I remember my own parents as the realisation of what they went through with me sinks in.

How tolerant, calm and wise they were, how well they hid their feelings when I left home.  For 18 years my daughter has been a huge part of my everyday life.  I’m the youngest of three siblings, the oldest of whom is a decade older than me, so when I flew the coop it brought to an end for my parents not 18, but 28 years of raising children.  I’m only now appreciating just how difficult that time must have been for them, particularly mum, who invested so much emotion into raising us three. My mum and dad will have known, perhaps even more than I do now, the curious combination of sadness and joy that I’m experiencing as my daughter settles into her adult life away from home.

To make this period even more poignant, Invisible Ink, a novel that I wrote when both my parents were dying is to be published next month.  One of its characters is influenced by my mum’s last years as she developed dementia and we, her family, placed her in a nursing home.  Invisible Ink is fiction – its chief protagonist is a 36-year-old male lawyer, Max.  So hardly me.  But the guilt that pervades it is very much mine.

Rereading it before signing off the final proofs I was reminded how little I knew about dementia when mum was alive.  How ignorant, confused and frustrated by mum’s condition I was back then – characteristics shared by Max, albeit in heightened, fictional form.

It was only by complete chance that I connected with my mum the day before she died.  It was Christmas Eve, and knowing her love of the Nine Lessons and Carols, I chose to listen to the service from King’s College, Cambridge on the radio, with her.  The familiar notes of the solo chorister’s voice opening Once in Royal David’s City touched mum’s soul and, ill and close to death as she was, she opened her eyes.  It was a deeply moving moment that remains with me still, and which I wrote about here.

Now though, through my blogs, and several years after I completed Invisible Ink (publishing can be a long old business), I understand so much more about the condition.   I know the power of familiar music and songs, of the rhythms and inflections of much-loved poems when spoken aloud, of long-held, deeply buried skills – whether they be sinking golf putts, arranging flowers, whittling wood or planting bulbs – to reach out to, comfort and touch the hearts of those with dementia, even when the condition is advanced.  I wish I’d been aware of all this earlier.

Unlike me, some people possess natural skills in this field and/or are trained in how to connect with others who have lost the common powers of communication.  Andy Tysoe, a specialist dementia nurse based in Chester, is just such a person; his tireless mission to improve the lives of those with the condition goes far beyond the call of duty.

andy-tysoeA Dementia Champion, Andy has created 5,500 dementia friends and delivered 200 of his tailor-made DementiaDO training sessions which incorporate both NHS and Alzheimer’s Society features.  Recently, in the run-up to @FabChangeDay  on 17 October he’s been tweeting daily #dementiaDO post-its written by some of those who have attended his courses.  Simple, true, they hit home:  “Ppl with dementia have invisible disabilities. They need time, understanding, US!”, “”Don’t forget that people with dementia cannot help it, they didn’t ask for this 2 happen to them”

The latest to benefit from Andy’s enthusiasm are a group in the north-west of England affected by Posterior Cortical Atrophy (PCA), a rare form of the condition which initially affects vision and spatial awareness more than memory.  Among them is 57-year-old Paul Bulmer, a former IT consultant diagnosed with PCA four years ago, and his wife (and now carer) Alison, from Helsby.

They feature in a recently released NHS England film which opens with an evocative and nostalgic blast from the past as a steam train pulls out of Bury Bolton Street station in Greater Manchester.  On it, along with other members of the north-west PCA support group, are Paul and Alison, a former teacher.

For, as Andy discovered when the two of them were talking, Paul’s father was an engine driver with a lifelong passion for trains.  Others might have noted this with interest and then simply got on with their lives.  Not Andy.  He immediately understood the significance of what he’d just heard and determined that Paul should, if at all possible, get to ride on the foot plate of a steam train.

Paul & Alison Bulmer at an Alzheimer's Society half marathon about 18mths ago

Paul & Alison Bulmer at an Alzheimer’s Research UK half marathon about 18mths ago (Sadly, Paul can no longer run)

Alison told me just how much railways mean to her husband.  “Paul remembers standing with his dad as the last train left Gisborough train station at the time of the Beeching cuts.  He recalls having his photo taken with his dad.  It is deep in his memory – the sights, the sounds, the smells”.

Keen to tap into Paul’s long-held memories, Andy planned a train trip for the PCA group from Bury Bolton to Rawtenstall and back.  Alison knew that her husband would enjoy the day because he could relax in the company of a group who understand his condition and who don’t hurry him or have any expectations, but she had no idea that Andy had a surprise in store for Paul.

“When Andy asked him if he’d like to go on the foot plate it was an emotional moment and a few tears were shed”, she said.  “But they were poignant tears”.

I bet they were.  Once achieved, Andy’s mission seems such an obvious one, but how many of us – even if trained in dementia care – would a) realise its importance to someone like Paul Bulmer and b) put in the effort to make it happen?

It is these moments, these seemingly small but emotionally big moments, that I am privileged to write about nowadays.  The experience of doing so, the people I’ve met since I set up my blog, have changed my view of the world.  I think they’ve made me kinder and less impatient; they teach me by example and they make me stop and think.

Whatever life throws at my daughter in the coming years, I hope that having seen her granny with dementia and having read some of what I’ve written about the condition, she’ll have a greater understanding of what it is and how life can be made so much better for those who have it in countless simple yet meaningful ways.  Somehow, knowing Emily, I think she will.



You can buy Christmas cards painted by Paul Bulmer in aid of Rare Dementia Support (an organisation which provides specialist support for people affected by rare dementias) here:



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The Price Of Care

careSeventeen care workers are suing a council contractor for failing to pay them the minimum wage in a case which their union says involves the worst breaches of wage law that it’s ever seen.

The employees’ wage slips appear to show that they are being paid £3.27 an hour – less than half the national minimum wage of £7.20.  The contractor, Sevacare, maintains that they are in fact paid £7.85 an hour – and says the £3.27 figure is a quirk of the payroll system.

I’m not going to go into the details of the tribunal case.  It is on-going for a start.  Suffice to say it seems to hinge on whether the carers were being paid across all 24 hours of the day even when they were sleeping (theirs was a live-in job, looking after an elderly woman with dementia) or whether (as Sevacare says) they were being paid for 10 hours work a day.

But let’s face it, even if the tribunal rules that Sevacare is right and it has indeed paid its employees £7.85 an hour, is this what one would expect those looking after the frailest and most vulnerable in our society to be paid?

The whole sorry story has reminded me of a Thunderer piece that I wrote for the Times a few years ago on the scandalously low wages paid to care workers.  The subs headlined it: “Who’s really at fault over care for the elderly?  We are”.  When I first saw those words in black and white even I was shocked.  But it was true; I still stand by it, and you can read the column here.

In it I said that we, as a society, look on (and frequently moan about poor standards) while those who care for our relatives do so on hourly rates that were lower than my then 16-year-old daughter earned babysitting for neighbours.

Radio 4’s flagship current affairs Today programme ran at least three separate items on the Sevacare story – this is good: the low pay levels of those who work in care deserve publicity.

In one of the items, interviewer John Humphrys asked former Health Minister Alistair Burt whether, given his ministerial experience, he felt that we as a society were prepared to be more tolerant of relatively poor care than we would be of any other aspect of health services and social welfare.

Alistair Burt’s answer revealed that in the three years since I wrote my Thunderer column we are still no closer to finding solutions or, dare I say it, facing up to the inescapable truth that, as a society – and I’m not talking about the scores of individuals I’ve met since starting my blog who devote their lives to looking after others – but as a society we don’t pay those who work in social care enough, nor do we accord them enough respect for what they do.

Burt said, “I formed a judgement – and said so in a debate in the House of Commons before I left – that in terms of mental health and adult social care there was a sort of tolerance for standards which would not be acceptable, or be seen to be acceptable, in acute hospitals.

He said that while strides were being made to improve this situation, much was still to be done, and he continued: “As a society more broadly, are we all prepared for ageing society and its costs?  I don’t think we are.  People reach a stage where they think that something will magically be covered by the state as whole.  We can’t afford to do this and we haven’t really got the costs of adult social care and the costs of individuals, as well as the state, sorted out”.

I’m afraid, sadly, I would have to agree.

imagesX4M6PF7XBut to end on a positive note, the same Today programme included a piece about Anniversary, a production at the West Yorkshire Playhouse (which seems to be a brilliantly innovative place – last year I wrote about its dementia-friendly production of White Christmas) which combines dance and story-telling by performers (both professional and non-professional) aged between 50 and 90.

Its director Alan Lyddiard, who is 67, said that he used older performers because people of his age felt a bit forgotten.  “But why dance?” asked Humphrys, in characteristically bullish form.  Why not something more suited to older people?

“There is something very beautiful about an older body – the way it moves, controls itself and extends itself gently,” said Lyddiard.  “It doesn’t try to be athletic; it tries to instil a kind of quiet beauty that emerges out of the movement of an older body.”

As a woman with an older body (who happened to do ballet for 15 years), I like that.

And as a dementia blogger (or just as a person, actually), I like the fact that there will be a dementia-friendly performance of Anniversary at the West Yorkshire Playhouse on Saturday 17 September at 1.30pm.



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Kate Granger

Kate Granger, painted by Antonia Rolls for the A Graceful Death exhibition.

Kate Granger, painted by Antonia Rolls for the A Graceful Death exhibition.

Dr Kate Granger was bemused when people told her (as they often did) that she was inspirational.   She described herself in typically down-to-earth fashion as “Just a Yorkshire lass trying to deal with a horrible situation in the most positive way I can manage”.

Kate, who has died of cancer aged 34, used her experiences as doctor-cum-patient to make a difference to the service she worked in.  A consultant in geriatric medicine, she wanted to leave as her legacy a better NHS which, in her words, “considers patients as people not just diseases or conditions”.   She found a means of achieving this through her hugely successful #hellomynameis campaign, encouraging and reminding all healthcare professionals to introduce themselves to their patients.

Deceptively simple as an idea, the principle behind the campaign was – as Kate well knew – much deeper and far more important than a mere courtesy.  “It is about human connections, establishing therapeutic relationships and building trust,” she said.

As I write this, the #hellomynameis hashtag is trending on Twitter; before Kate died it had racked up over one billion impressions.  In the three years since its launch #hellomynameis has helped power the drive for more personalised, compassionate care, gaining support from over 400,000 healthcare workers and over 100 healthcare organisations.  Its influence now extends beyond the UK, with offshoot campaigns in France, Germany, Italy, Spain, the US and Australia.

In a sign of the campaign’s impact, one of the first acts of the new Prime Minister last week was to write to Kate Granger to thank her for her contribution to the NHS.  She began her letter, “Dear Kate, My name is Theresa and I took over from David Cameron … “

I think it’s fair to say that Kate’s campaign has made a positive difference to the way healthcare is delivered, in this country and elsewhere.  Yet that is just the half of it.  Following her diagnosis, Kate and her husband Chris also set out to raise £250,000 for Yorkshire Cancer Centre through various fundraising events including a sky dive, a 10K run and a 13 mile trek.  Just three days before she died, Kate heard that they’d succeeded.  I wonder if she was waiting to smash the target before letting go – from what I’ve heard of this remarkable woman I wouldn’t put it past her.

Eight weeks ago, in an interview with the Daily Telegraph, Kate said, “If I dropped dead tomorrow, I wouldn’t be unhappy with the life I’ve managed to achieve in the last five years.  I’ve managed to create some amazing legacies. All doctors want to leave their mark, and I think I’ve managed to do that”.

She certainly has.  Kate’s strength lay in her ability to be both ordinary and extraordinary.  I first encountered her in a film made by Dying Matters, a coalition of organisations designed to promote more open discussion of dying, death and bereavement, in which Kate and her husband Chris spoke openly about her terminal diagnosis, her plans for dying – she said she’d like to die to Vaughan Williams’ The Lark Ascending – her hopes and fears.

Kate set up another hashtag #deathbedlive to use when the time came, and use it she did right up until a few days ago when she tweeted an apology for “the distinct lack of #deathbedlive tweets. I’ve not had the energy … I’m so grateful for everyone’s support, messages & presents. TY x”.

The picture at the top of this blog is by Antonia Rolls and was commissioned as part of her exhibition and project “A Graceful Death” which explores – through portraits, paintings and words – what it is to die.  Antonia told me that it shows Kate, in her own words, sitting on her sofa smiling and looking like the girl next door.

Kate Granger helped make the unspeakable, speakable; she encouraged others to talk about things they found hard to put into words. She was a doctor as interested in the people for whom she was caring as their conditions. In this, she wasn’t unique.  But her perspective as both doctor and terminally ill patient, combined with her determination, humility, humanity, honesty and kindness made her one of a very special kind.  She will be sorely missed, not least by her soulmate Chris Pointon.

After watching the Dying Matters film, I wrote in a blog that the bond between Kate and Chris was tangible and that there was something almost unbearably tender about the way he always seemed to have an arm around his wife as if to protect her.  “He can’t save her from cancer,” I wrote.  “But he can – and I’ve no doubt he will – ensure that her wishes are followed when the time comes”.

And now it has.

In one of her many quite brilliant blogs about being a terminally ill doctor, Kate mused on the notion of having an “expiry date”.

“So having a likely expiry date is a strange place to be aged 31.  It clearly has its downsides with emotional turmoil and disappointment, but there is a silver lining too if you look hard enough”.

She quoted a poem of Canon Henry Scott-Holland:

“Death is nothing at all
I have only slipped away into the next room
I am I and you are you
Whatever we were to each other
That we still are”.

It is a haunting yet steadfastly no-nonsense poem with a refreshing clarity of purpose and rhythm.  I never met Kate; I wish I had.  She’s gone now, slipped away, but her legacy lives on.



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Growing Support

UnLtd_growing_support_by_ashley_bird-9I love gardening, as did my dad.  It’s being outside, hearing the birdsong, smelling the earthiness of the soil, seeing green shoots magically appear from seeds you’ve sewn.

Now this fulfilling pursuit is increasingly being used to help care home residents and those with dementia reconnect with nature, with other people, with life itself.  It’s one of those activities, like care farms and breeding hens (both of which I’ve written about), that fire the imagination and set your soul singing.

In the West Country, a conversation between two friends over Sunday lunch about how bored their elderly relatives were in their care homes led to the creation of Growing Support, a social enterprise that runs weekly gardening clubs for older people including those with dementia.

Take a look at its website where, in an uplifting video under the What We Do/Activities tab, a group who use the Let’s Grow community allotment in Knowle, Bristol, explain how much they gain from it.

One of them is 63-year-old former bus driver Mike Stillman, who was diagnosed with young onset dementia a year ago.  He also has two allotments at Frenchay and tells me he’s planted 155 cabbage plants and grows beetroot, garlic, celery and potatoes. When we spoke a while ago he was just about to plant 250 broad bean plants.

“I think it’s very important to keep active – with gardening you exercise both body and mind”, he says.

Dale Cranshaw, 33, one of Growing Support’s two founders, explains that being outside in the natural environment has many inbuilt benefits for those with dementia because our brains become more relaxed when they don’t have to deal with the many different stimuli – such as fast, noisy vehicles and busy pavements packed with pedestrians – of urban areas.

“In nature it is easier to focus and engage.  Even a view of nature reduces stress and depression, and even if someone with advanced dementia doesn’t like gardening they can still benefit from coming outside and using the different senses of smell, touch and sight,” he says.

It is also easier to run group sessions outside because you can adapt to varying needs.  “In a garden, if someone doesn’t want to sow seeds,” says Dale, “they can weed or do some cutting back – there’s more flexibility to swap activities”.

UnLtd_growing_support_by_ashley_bird-15In the three years since it was founded, Growing Support has established gardening groups for people with dementia in three community gardens – all in the Bristol area.   It now has three employees and two freelance workers.  Key to the organisation’s success are its 40 volunteers (co-opted following a rigorous recruitment process) who, in the course of a year, support regular gardening activities in 30 care homes – last year they delivered 1,000 hours of therapeutic pursuits for older people, including those with dementia.

Dale and his co-founder Victoria Hill, 45, whom he met when they were both volunteering in Sierra Leone, both knew that they wanted volunteers to be part of the venture when they set it up three years ago with a £3,000 grant from Unltd, a foundation that supports social entrepreneurs.

Grace Walsh is one of the volunteers.   A community nurse by profession, she has been working with people with dementia for 12 years and says there is “a spiritual aspect” to gardening – when someone simply sits, smells a plant or looks at a garden.

Grace, 59, is in no doubt about the benefits to those with the condition of gardening and being outside.  She lists reawakening an awareness of the changing seasons, topping up Vitamin D, gaining a sense of purpose through planting edible things, getting muddy hands and feet instead of being washed clean the whole time.  “It can be a little frightening for some people with dementia but they get used to it with our help,” she says.

She also gains from it.  “It’s a luxury for me to sit with someone quietly and get them to pick up a seed and put it on a piece of paper.   I have to slow down and be where they are.  It is joyous and very beneficial for me”.

Twenty-six-year-old Rosie Sinfield explained how the training she received as a volunteer with Growing Support helped her to communicate with those with dementia by keeping her sentences short and simple.  She volunteers at Glebe House, a care home in Almondsbury, and describes one man who, having been passive for weeks, rediscovered long-forgotten skills when he began scooping soil out of a trough into a pot.  “I could see that he had done this hundreds of times before.  He was at home in the task and it was great to see”.

I spoke to many people to research this blog but actually the best window onto what Growing Support achieves in its green-fingered way is its colourfully illustrated Facebook page.  Take a look and you’ll see members of the AbleCare Homes Frenchay gardening club tidying their bee-friendly planters and discovering, while chatting, that one of their gardeners used to play football with Prince Philip; Blossoms Fields gardening club tying up their runner beans and planting summer-flowering bulbs (tasks that exercise fine motor skills); and the group at Springfields Allotments making homemade elderflower cordial.

It’s enough to make you snap shut the laptop, reach for the secateurs and run outside.  After my dad died we planted a rose in his memory in the churchyard and marked it with a small plaque, for which my sister chose the following quote.  “He who plants a garden plants happiness”.   Amen to that.

Growing Support Gardener and Volunteer Photo

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Chris Roberts’ Story

Jayne, Chris & Kate Roberts

      Jayne, Chris & Kate Roberts

The first thing I’d like to say in this blog is: thank you.  I’m not a fan of capitals, but if I were those two words would be in the headline writer’s huge 72 point, all upper case.

My 72 point thank you is to Chris and Jayne Roberts and their family for having the courage to open up their lives – touched, moved and transformed as they all are by Chris’s dementia, which he developed at 50.   Over almost two years the Roberts, who live in North Wales, allowed CCTV in their home and used video diaries.

The result was an exceptional BBC Panorama documentary which went out this week.  Often hard to watch, particularly if, like me, you have met Jayne and Chris, it was frequently sad, always insightful and informative, and occasionally surprisingly uplifting.

I have seen them both speak at dementia conferences (dementia is the umbrella term for over 100 types of the condition, of which Alzheimer’s, which Chris has, is by far the most common) and what struck me as I watched the programme was that their life is so very much harder than they make it appear.

Kate Swaffer, an Australian living with younger onset dementia (when someone is diagnosed under the age of 65), says for much of the time she “feels like a swan, calm on the surface but paddling faster and faster below to stay afloat”.  She also says, “The paddling is imperative to maintain my dignity, as it is humiliating to show the symptoms”.

I kept thinking of Kate’s words as I watched 55-year-old Chris’s constant, very difficult daily struggles.  I’d had no idea of how severe his dementia had become, despite having seen him on several occasions.  To me, he was a sharp, clever and inspirational man.  He is.  He still is.  (Though he has now bowed out of the conference circuit).  But what efforts he, Jayne and their 18-year-old daughter Kate – who has stayed at home to help support her dad – have to make to keep their own daily show on the road.

The importance of what this family have done cannot be underestimated.  That someone as immersed in the subject of dementia as I am can have their eyes opened by an hour-long programme is quite something.  A part of me knew how hard life must be for those with dementia, such as Wendy Mitchell, Jennifer Bute, Ken Howard (to name but a few of the many with the condition who work tirelessly to increase awareness and knowledge of it throughout the UK and beyond).

But though I thought I knew, I didn’t really.  This is what the programme showed me.  For it to work required unflinching honesty – and this the family gave us.  In spades. Chris and Jayne have five children who all appeared on the programme.  Their candour in front of the camera, difficult as it obviously was to deliver at times, is an invaluable gift to the rest of us because it increases immeasurably our understanding of this most misunderstood (and feared) condition.

You don’t have to take my word.  National newspapers in the UK, from the Daily Telegraph to the Sun, ran long pieces on the programme (I was delighted that most picked out, as I did, Chris’s wonderful soundbite, “Don’t be scared, live life.  Take it by the danglies and run with it”).  Chris, Jayne and Kate also made a typically assured and articulate appearance on BBC Breakfast TV.

To be honest, the family are a journalist’s dream.  Not just because of their honesty – we hacks really do like honesty.  Honest.  But because of their fluency.  Here are a few of their best statements and it is, of course, the truth behind the language that makes it so powerful.

“The person I miss most is me”, says Chris, early on in the programme (which, I should add, was beautifully constructed and sensitively made).

Soon after he was diagnosed five years ago Chris chose the care home he wants to live in when the time comes.  I’m not sure I would have had the guts to do it, but Chris perceptively realises that in doing so he takes the burden off his family.  “It’s entirely my plan,” he tells the camera, “ – though I do have dementia”.  His ability to find humour in the worst of situations is one of his many great characteristics.

He’s astute.  Having lived five years with Alzheimer’s, his advice to others is, “Don’t forget the children”.   Through my writing I’ve discovered that how adults with younger onset dementia choose to include their children is important, delicate and difficult.   “I don’t enjoy things anymore,” says Chris. “But I’m probably the lucky one because I’ll forget”.  He may forget, but he’s very aware of the future implications of his condition on his loved ones.

Jayne is equally candid.  One of the most moving moments was when she admitted that, much as they both needed some respite, she wasn’t prepared to let Chris take it – not for his sake, but hers.  “I can’t risk him going in for a week and me not wanting him back”.  It was a breathtakingly honest statement to make on national TV. It will help thousands of others experiencing the same painful, conflicting emotions.

There was a turning point in the history of the public’s perception of cancer.  It came in 1965 when Richard Dimbleby, the “voice of the nation”, helped banish the stigma of the Big C by announcing on television that he had testicular cancer.

The Roberts family may not be the voice of the nation, but they are the voice of the 850,000 people in the UK with dementia, particularly the 40,000 with young onset.  Through their courage they have roared – with brutal honesty, yet with dignity – and their voices have been heard, written about and talked about as never before.  They’ve made a huge (72 point, capital-lettered) difference and, as a society, we owe them an enormous debt.

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A Sadly Underwhelming Elegy

IMG_1265Nick Payne’s short, intense play Elegy, currently playing at the Donmar Warehouse, is undoubtedly clever and thought-provoking, but it left me feeling curiously underwhelmed.

The acting, from its three protagonists, particularly Zoe Wanamaker as Lorna, a late middle-aged woman suffering from a nameless brain-debilitating disease very much like dementia, is superb.  But I wondered if it wasn’t so much a play as a cleverly staged and very interesting philosophical debate on how memories define our identity.

The premise is promising: a futuristic world in which it is possible to replace damaged parts of someone’s brain at the cost of large chunks of his or her memory.  Lorna’s disease will kill her unless she undertakes such a procedure.  But undergoing the operation will erase all memories of her relationship with her wife Carrie, played by Barbara Flynn.

We first meet the two women after Lorna has had the life-saving procedure.  “What does it feel like, not having a piece of your life?” Carrie asks.  Lorna’s answer, delivered in a matter-of-fact, emotionless way, reveals the cost she (and Carrie) have paid for her survival.  She is no longer the woman she was, the woman Carrie loved.  Or is she?

The huge question of what constitutes an individual’s identity is thus posed at the outset, before we, the audience, are even properly aware of what’s going on.  “I miss loving you,” says the tormented Carrie.  “It’s as if you are dead”.

This is all very sad and not a little confusing when uttered so early in the play.  It is a mark of the skills of all three actors – Nina Sosanya gives a faultless depiction of a first-class doctor with zero emotional empathy – that they carry us with them at all, for the play never really develops beyond a soul-searching reflection on how our memories define who we are, and ends with the same few minutes of dialogue that it began, now rendered more understandable though no less uncomfortable to watch.

Dementia, of course, is a bit like this.  There are no clear answers.  But Elegy isn’t life, it’s art; it’s a play and, answers or not, I think it needed more flesh on its bones.

Zoe Wanamaker’s portrayal of Lorna hints at the mischievous, sparky little thing she once was (and still is to a certain extent before her operation), while Carrie seems a more solid, dependable type.   That’s really all we’re given and I’d like to have known more about their relationship, the little details that made it what it was.  I’d like the people to have been brought to life as much as the ideas were.

Beyond the fact that the two women were both teachers who first met in church and that they couldn’t agree on the readings at their wedding, we know very little about them.  They met, they loved and now, at least for Lorna, that love has gone.  The couple’s ultimately riven relationship is symbolised on Tom Scutt’s simple stage set by a tree trunk, split in two.

It’s almost as if, having posed the big questions at the outset, the play’s great potential is never fulfilled and we merely turn full circle.

Perhaps I’m being unfair and it is because I am now so immersed in the world of dementia, of memories lost, of relationships and identities that are challenged and changed, that I expect too much of an hour-long play.  But just as, at the heart of any discussion of dementia is the person affected by it and his or her loved ones, at the heart of this play, surely, are its characters, and I’m just not sure I knew who they really were.

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Jane & Phil’s story

Phil and Jane in 2014

Phil and Jane in 2014

A few days ago when out walking Bert, I bumped into someone I hadn’t seen for years and the two of us stood chatting for a good ten minutes or so before resuming our paths with our respective dogs – hers, a lovely black Labrador called Rye.   Our exchange, though, wasn’t the normal stuff of middle-aged mums in our neck of the woods – namely, children, schools, university choices and the like – but dementia.

Jane, a secondary school teacher, is 56.   My daughter Emily and Jane’s youngest son went to the same primary school many years ago and when the children were little, Jane and I attended the same weekly conversational French lessons.  I remember her as conscientious and intelligent.

I’m sure she still is.  But hers is a very different life now.  Four years ago when Jane’s husband Phil was 62 he was diagnosed with frontotemporal dementia.  As we talked in the spring sunshine, the dogs tugging on their leads, the pain, guilt, anger and sadness, the sorrow and loss that has subsumed her life in the last few years spilled out of her.

As so ever with dementia, the diagnosis, when it finally came five years after Phil’s behaviour began to change, was a massive relief.  I hear this over and over again; yet those whose lives have not been touched by this most feared of conditions may find that odd.   How on earth could diagnosis of such a dreadful thing produce relief?

To hear Jane’s story is to know why.  And for Dementia Awareness Week – in which an Alzheimer’s Society’s study shows that 56 per cent of people put off seeking a dementia diagnosis for a year or more – I’d like to share it with you.

That Jane, a local acquaintance I happened to bump into, is prepared to let me do so is a mark of the woman.  She wants to spread the word of what dementia is, to let others know how it affects, not just those who have it but their loved ones, to advise anyone anxious that someone for whom they care may have the condition to see a doctor and push for a diagnosis.

Jane and I followed up our chance encounter with a phone call and she told me that in 2007, aged 57, her husband lost his job as headmaster of a large comprehensive school in Westminster, where he had worked for 30 years.  So when he became unusually apathetic – sitting in his chair and watching TV for hours on end – she assumed it was depression brought on by shock.

“I’ve learnt that there is always a need for the family carer to look for an explanation as to why something has happened – you hang onto your reason, you say, ‘Oh, that’s why he’s behaving so oddly, he’s depressed’”.

For some years Jane struggled on.  Her two youngest boys were living at home, and she says she feels guilty about not doing anything about Phil for so long.  Guilt, as anyone with a loved one with dementia will tell you, goes with the turf.  I remember this well: I frequently shouted at my mum for being unreasonable to dad, only to realise years later that she wasn’t being cantankerous.  She was ill; she had vascular dementia.

This blurring of lines, this lack of clarity, perspective and knowledge, is a strong thread in the lives of those caring for someone with the condition. It adds to the muddle and confusion, the angst and worry and guilt.

In July 2011 an incident prompted Jane to act.  Her husband attended his best friend’s 60th birthday party alone because she had been invited to her good friend’s wedding on the same day.  Soon afterwards Jane received a letter out of the blue.  It was from Phil’s best friend’s wife, writing to ask if Jane was okay and to tell her that Phil had behaved strangely at the party, where he had talked “gibberish”.

“She is an ex-nurse and she mentioned the Alzheimer’s word.  I thought, ‘Thank God – this is more pro-active’”, Jane said.  She later went on to make an appointment for her husband to see his GP.

In retrospect, Jane realises that she didn’t act earlier because there had been no one else to witness the changes in Phil and provide another perspective.  “I was coping with a deteriorating situation, adapting to the situation, finding resources to cope.  And my boys – all boys, I think – tend to keep quiet”.

The following spring Phil was given the diagnosis which, says Jane, was an enormous relief.  “It all made sense then and I knew that Phil wasn’t withdrawing from me or the boys, he had dementia.  There was a reason for his behaviour”.

But just weeks before the clarity provided by a diagnosis, there was to be one more very frightening episode. In February 2012 the couple and their two youngest sons were staying in a hotel in Bournemouth.  Phil was already displaying habitual, repetitive behaviour, so when he said that he was “going to get the paper” (one of his constant phrases), it didn’t ring alarm bells.

Four hours later, after he had failed to return, Jane phoned the police, who took the disappearance seriously when she told them that her husband was due to have a brain scan in a few days.  Phil remained missing for 48 hours and the police told Jane and her sons to return home.

“Driving home I was planning Phil’s funeral in my head and working out how I could explain to everyone that I had lost him,” Jane told me.  “I knew he was depressed and I was convinced he had walked into the sea”.  I can only imagine her silent anguish as she sat, wracked with grief and guilt, hands on the steering wheel, staring ahead, driving her boys back up to London.

For the first time, as she told me this part of her story, Jane’s emotions momentarily got the better of her.  Her tears were not for herself, of course, or even her husband.  Being a mother, they were for her son, who had been with his father when Phil left the room.  “I simply couldn’t bear my son blaming himself for letting Phil go out of the hotel room.  It would be so, so unfair,” she told me, her voice cracking.

In fact, half an hour out of Bournemouth Jane received a phone call to say that Phil had just walked into the police station.  She turned tail and headed back to be confronted by “a changed person”, by a confused, dishevelled man who had spent two nights on a park bench.  “We were sent back to London with someone who – to me – had come back from the dead”.

A few months later, following the brain scan, the diagnosis was made.  Now, four years on, Jane is no longer a part-time teacher but a full-time carer.  “I have become the caretaker of Phil’s body.  I meet all his needs, however intimate, however irrational they are.  I care for him”.

Jane is so brutally honest about what it is to live with and care for someone with dementia that I am humbled by her confidence in me.  I know she’s telling me because she wants to let the world know what it’s like.  I want to do her justice, to convey her message as best I can in this of all weeks.

At the end of our conversation Jane describes “the very slow creep” of losing her husband.  She compares it to watching a pilot light go out, and as I put the phone down my heart goes out to this former teacher whose French homework was always so much better than mine.

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The Mum Tab

Emily & Bert

Emily & Bert

As part of my website revamp I’d intended to ditch the Mum tab (above) which – despite my best intentions – is hardly ever used.  The fact is I now blog almost exclusively about dementia.  It was only because the very basic framework of my website wouldn’t allow me to replace the Mum tab with my new photo that the tab remained at all.   A decision based entirely on the look of the home page.

Yet, with uncanny timing, as thoughts about my online persona swirled in my head, quite separately it was dawning on me that my one and only daughter would soon be leaving home.   This September, Emily – who, quite frankly, was in short socks and braces only yesterday – is off to university.  My maternal nest will be empty. My Mum tab redundant, you might say.  And yet … time for a deep and steadying breath.   The thought of our house without Emily is unthinkable.

Eighteen years after my husband and I received the call telling us that, finally, against all the odds, our fourth attempt at IVF had worked and we two were to become three, we will be two again.  Bert the cockapoo notwithstanding.

Now don’t get me wrong, there are many things – such as regaining sole possession of my cashmere cardigans and not lying awake till the early hours with one ear cocked for the turn of her key in the lock – that I’m looking forward to once my girl has flown the coop.

What I simply cannot comprehend is where the 18 years have gone and how my life can ever readjust itself.  For Emily’s lifetime, my world – for good or bad (and believe me, we’ve had our moments) – has revolved around her.

Since she was placed, kicking and screaming, into my arms one warm June afternoon in 1998 (it was 4.15pm, she weighed 7lb 7oz), my focus has shifted onto her, my gaze – once turned towards my husband and my wider, working and social life – has always really, secretly, subconsciously, been bent on her.   And ever since that day, my daughter’s highs and lows, her laughter and tears, her hurt and joy and triumph and disaster, have been mine too.

Her first day at primary school.  That longed-for time to myself suddenly somersaulting into a panic-inducing, shallow-breathed awareness that my little, often irksome, shadow wouldn’t be with me the whole time any more.  How quickly these things happen.  From nappies to Startrites to vertiginous stilettoes in the blink of an eye.

Even then, 13 years ago, she was independent.  I stood rooted to the playground’s tarmac, swallowing hard, as she skipped off behind Miss Mary without so much as a backward glance.

IMG_1222And what about Gerald the Giraffe, her constant companion for years and years?  That stuffed toy animal crossed continents with us, entertaining ochre-covered tribesmen in the Masai Mara and Egyptian waiters in Red Sea resorts.  He had his own deckchair, his own designer shades.  He had his own handmade passport for God’s sake, which customs officials, depending on their state of mind, would sometimes stamp.

Emily also had two imaginary friends called Agar and Ollie, with whom she’d conduct lengthy conversations in the back of the car.  When one of them died, I had to deal with the funeral of my daughter’s invisible, non-existent but very much loved chum.  It was a tricky one, that, and called on every ounce of my existential creative juices.

She had a Barbie phase when everything she owned was pink.  She climbed Glastonbury tor in high-heeled, plastic Barbie sandals.  She catapulted over the front of her micro-scooter and landed face down in the concrete.  Her front teeth slowly turned brown.  It was very distressing.  But it transpired that, being baby teeth, they were simply bruised.  They went white again before falling out, leaving her with that wonderful, best-of-all, gap-toothed look that makes your adult heart turn over.

She went off to big school on the big school coach.  The first day, as the two of us waited for the W4, an old-fashioned red London double-decker loomed into view.   The W4 was out of action, so Emily’s first ever solo ride to school was in a Party Bus – it was written in great big letters on the front.  I walked home happily.  It was a good omen, I said to myself.

And mostly, it was.  At times she’s worked too hard and played too hard.  One minute she was learning to ride her two-wheeler bike, the next she was sticking L plates onto our car.  Our house has never quite recovered from her teenage parties.  But nowadays every time I yell at her for nicking my favourite lipstick, my husband quietly reminds me that soon she’ll be gone.

“She’ll be back”, my mum friends tell me.  Of course she will.  But the truth is it won’t ever be quite the same.

Come the autumn, in the evenings the house will be empty (Bert and my husband’s 18-hour working days notwithstanding).  My daily structure of almost two decades will have gone.  I won’t hear the door bang, the thud of her feet as she runs up the stairs or the theme tune to Friends on its never-ending loop.  I won’t walk into her bedroom and fume at the unbelievable mess.

So, being Irish (and superstitious) I can’t tell you how pleased I am in retrospect that style trumped content when it came to my blog.  Emily may be becoming an adult in the eyes of the world; she may be leaving home in just a few months, but she’ll always be my daughter.   Mum tabs are never really redundant.


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Speaking Out – About The Social Model

images (1)I caught a fascinating programme on the radio the other day.  A group of people who had campaigned to end disability discrimination in the ‘70s, ‘80s and ‘90s gathered to share memories in The Reunion on Radio 4. Their discussion was chaired by Sue MacGregor, who recalled that in the 1970s the campaigners adopted what was called the “social model”.  This model suggested, she explained, “that it was society, built and run by non-disabled people, which had prevented them from actively participating in a fuller working and social life”.

Given my thoughts on society’s treatment of those with dementia, Sue MacGregor’s words piqued my interest.  All the more so when I discovered that among those on the radio discussion panel was Lord Hague of Richmond, a man I remember from my days as a Hansard reporter at the House of Commons.  Back then he was plain William Hague, a young Minister taking the Disability Discrimination Bill through Parliament in 1995.   Twenty one years ago I reported those debates as they passed through their Committee stages and made it into law.

I remember too the campaigners’ demonstrations. Scores of people in wheelchairs – many of them electric – lined Westminster Bridge.  As Baroness Jane Campbell, another member of the radio panel (and wheelchair user), recalled, “Now these electric wheelchairs, you cannot lift them; it takes five grown men.  And there we would stay and we would stop the traffic”.  They certainly did.  One of the stationary drivers was me, in sight of my office and in danger of arriving late for work – unthinkable for someone who was (quite literally) employed to record history being made.

But I digress.  The interesting point about the demonstrations was not my predicament, but that they came about because disabled people were fed up with society mistreating them and failing to include them in decisions about themselves.

Baroness Campbell put it like this: “It (the social model) is basically saying that you are not the problem.  My condition and my person is not the problem, it’s the fact that society is not accessible and is unequal in its treatment towards disabled people.  We had a very strong mantra which was, ‘Nothing about us without us’”.

Substitute “those with dementia” for “disabled people” and you’d be guaranteed to hear the Noble Lady’s statement, soundbite and all, at any dementia event today. The difference is that she was talking about several decades ago.  Viewing dementia as a disability is controversial; but it is always worth considering the lessons of history.

A year or so ago I heard a thought-provoking speech on how the 2006 United Nations Convention on the Rights of Persons with Disabilities might be used as a framework within which to treat dementia as a human rights issue. It was fitting that the speech was given in Scotland, one of the very few countries to have a Charter of Rights for people with dementia and their carers.

At the Alzheimer Europe conference in Glasgow, Grainne McGettrick suggested that a UN convention for people with dementia would not only allow us to rethink dementia as an issue of social justice, but to reconsider both how we talk about dementia and who does that talking.

Grainne, a former research and policy manager of the Alzheimer’s Society in Ireland, said that this “human rights based approach” would also act as a catalyst for change, with those with the condition acting as the agents of change.

“Finding a collective voice,” she said, “can be a powerful tool for change and no one can deny the authentic voice of the lived experience”.

This was, of course, what the disability campaigners had discovered back in the 1980s as they rose up as one, blocking my way to work.  Today, those with dementia are coming together and speaking out.  It is my good luck to know some of them and my job as a writer to tell the rest of the world about their lives, the things that help them and shape their world, the obstacles that hinder and frustrate them.

Listeners to the radio discussion could also hear a low, regular background noise.  It was Baroness Campbell’s ventilator, which makes her voice sound (to use her words) like that of an astronaut.

As we couldn’t see the Baroness’s wheelchair, her voice provided an aural reminder of her disability, in much the same way as the odd stumble here and there reminds audiences listening to people with dementia that they have to paddle that much harder beneath the water in order to keep going.  Those with dementia, like those with disabilities, face constant, often invisible challenges that others, more fortunate than them, don’t – which means their words, when they come, pack a powerful punch that is hard to ignore.


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I’m Sorry Mr Humphrys But You’re Wrong

download“Twitter is utterly pointless”.  So says John Humphrys, Mastermind inquisitor and veteran presenter of the BBC’s flagship current affairs Today programme.   I know Radio 4’s resident Rottweiler isn’t everyone’s cup of early morning tea, but as a fellow journalist I admire his unswerving, if irascible, pursuit of an answer.   However, on the subject of Twitter, he is utterly wrong.   In a recent Radio Times interview where he was, for once, the interviewee, he has – excuse the pun – missed the point.

Of course endless tweets about strangers’ meals, their unfunny peccadilloes, their “cute” little darlings, are tedious.  Yet Twitter has a place.  A very important place.

Mr Humphrys’ interviews with those affected by dementia (both those who have it and their family carers) have shown him to be sensitive to the complexities and numerous emotional, psychological and practical challenges of the condition.   Indeed, two of his interviews were so powerful that I blogged about them here.  Yet he seems ignorant of the positive power that social media can play in those same people’s lives.

Mr Humphrys qualified his views a tad in the Daily Mail, admitting that “there are some reasons to applaud Twitter” and they involve its “community factor”.  He gives an example of the BBC’s technology correspondent solving a computer problem by asking advice on Twitter and finding an expert interviewee for a national story via the same route.

Yet this clever and usually perceptive Welshman has still managed to miss the real point.  Yes, Twitter’s strengths lie in its communities – as do (as he so rightly observes) its undoubted flaws.  Its bullies hide behind their Twitter handles, find false, swaggering courage in numbers, egg each other on and prey on their victims.  Sadly, all sectors of society contain unpleasant people.

The reverse side of the coin is that the absolute strength of Twitter lies in its “community factor” – not simply as a means to solve problems by asking a million global brains for help – but in the real spirit of community.  This is what I discovered when I set up my dementia blog two years ago.

To be fair, before I did this I too wondered about the purpose of distilling my earth-shattering views into 140 characters and releasing them onto an unsuspecting world.   I’d already written for various newspapers about my mum’s experience of dementia and discovered that my articles struck a chord with readers.  It was my husband who suggested that I set up a website so that my pieces could go “straight to market” as it were, bypassing the often frustrating process of placing them in national papers.

I was a nothing, a nobody, in the dementia world (or in any world come to that) so to advertise my blogs I tweeted about them, sharing the link to my latest post.  My Twitter followers – 30 when I wrote my first blog – rose exponentially and I was soon being followed by the head honchos of the Alzheimer’s Society, the Care Quality Commission, Alzheimer Europe, Dementia UK and a veritable host of People Who Matter.  Such is the power of the Internet.

And yet this is again to miss the point.  So, my pearls of wisdom were being read by VIPs – all well and good, and flattering for me.   But my most exciting and very early discovery was the power of Twitter to connect like-minded people – to form communities.  Just two months into blogging I was writing about this very subject.  The title of my eighth blog says it all: “Cheers! Why Twitter Matters”.

It matters because it joins up people who would otherwise never meet.  In an even earlier blog I’d described Twitter as “a fabulous global cocktail party” that takes part on the Internet, “where ‘virtual friends’ converse across continents, sharing ideas and best practice, encouraging each other and providing support.  Nowhere is this more applicable than for those whose lives are limited, both physically and mentally.  And – and this is the truly wonderful bit – the benefits of social media apply equally to carers, who often struggle on for years, their own needs pushed aside or unrecognised as their health and well-being pay the price”.

Researching a Guardian article I interviewed the 65-year-old wife of someone with dementia.  She told me that she feels trapped by her husband’s condition and likens her situation to that of a mother of young children, but writ large because she has no contemporaries in the same boat.  The Internet – Facebook and Twitter – can help carers to connect with others facing the same daily challenges.  She and I share posts on Facebook; we connect.  Occasionally we  – whisper it softly – actually meet.  In person.  None of this would have happened if I hadn’t tweeted out my blogs.

The most moving interview I’ve ever conducted was done in the privacy of my own home, via telephone.  It was with Jan Inman, whose husband Ron, who had Lewy Body dementia, had passed away days earlier and had still to be buried.   The interview was at Jan’s suggestion and I wrote it up here.  I “met” Jan on Twitter.  In fact I have never actually met her, but I feel we are friends now and we regularly interact via social media.

These are the family carers.  What of those with dementia?  I can only imagine the fear and confusion they may feel when they venture out and the possible comfort that virtual friends and contacts on Facebook and Twitter might bring them.  I see it, however, in the wonderful blogs of Wendy Mitchell and Chris Roberts, who I have met at various conferences now, but only after meeting them on Twitter.   There are countless other people with dementia who I feel I know but have never met; it would be invidious to single out anyone, but they know who they are.

And then there are the individuals whose passion to help those with dementia has led them to create enterprises such as Many Happy Returns (@SarahReed_MHR),  Engage and Create (@engageandcreate) and Life Story Network (LifeStoryNetwrk).  The list is endless, and they are all on Twitter, so you – and anyone else, perhaps someone who has just been diagnosed with dementia, or whose friend or relative has – can find out all about them.  This, Mr Humphrys, is the flip side of your argument.  Far from being utterly pointless, for those of us who use it in a positive way, Twitter is invaluable.

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Searching For Memories

A little bit of hope on a lovely spring day

A little bit of hope on a lovely spring day

Not being able to retrieve memories is one of the many cruel symptoms of dementia.  I have written a short memoir about the poignant moment when my mum, in the early stages of the condition, told me that she’d cried herself to sleep the night before because she couldn’t remember her life.

The notion of a scientific breakthrough to provide treatments enabling those with Alzheimer’s disease (by far the most common form of dementia) to rediscover their lost memories is a powerful one.   Now a new study has done just that – in mice.  Because I don’t like articles that give false hope I’m going to say, right here at the top of the story, that four out of five breakthroughs that show promise in studies with mice fail when they are tested on people.

And yet the accounts I’ve heard and read of this latest study are interesting enough to warrant a blog, so here it is.  A little bit of hope for a spring day.

On Radio 4’s Today programme, which you can listen to here, the study’s supervisor, Professor Susumu Tonegawa of the Massachusetts Institute of Technology described how, working with mice who had been specially bred to have the early stages of Alzheimer’s, his team discovered that the mice had not lost the ability to make memory, but the ability to retrieve stored memory.  “Using technology called optogenetics basically we cured this impairment in the mice,” he said.  (Optogentics is, put very unscientifically, the use of light to control cells in living tissue).

It was this aspect – that the team were able to “tease out the different types of memory deficit that one can see in Alzheimer’s disease” – that Dr Simon Ridley, Director of Research at Alzheimer’s Research UK, found so “interesting and exciting”; though he warned on the same Today programme that the study was of the earliest changes in the disease.  In later stages, when someone has suffered significant nerve cell loss and symptoms have become more apparent, the reversal is probably less likely.

As he outlined a possible early stage case study where the breakthrough information might apply – his language laced with caution and caveats – he provided as good an explanation of the disease itself, and of its difference from the normal effects of ageing, as I’ve heard in some time.

It’s worth quoting in full.  “What we believe happens –we still don’t know all the details – is that in Alzheimer’s disease, certain proteins start to build up, one of which is amyloid.  Over time, amyloid builds up, the connections between the nerve cells – which are crucial for normal brain and neuronal function – become irreversibly damaged and the brain cells die.  Other things happen: the brain develops a phenomenon called neuro-inflammation in which inflammatory cells are activated.  There’s a vicious circle of damage that ultimately results in a person dying – over two decades perhaps”.

An important part of Dr Ridley’s explanation is that the damage and ultimate death of the brain cells can result in the individual dying.  Alzheimer’s disease, the most common form of dementia, ultimately results in dying.   According to the Office for National Statistics, in 2014 the leading cause of death in women in England and Wales was dementia; it was the third most common form of death for males.  So many people I talk to (outside the knowledgeable “dementia community” of those with a personal or professional connection to the condition) are unaware of this.

And as if to underscore this, Dr Ridley stated in no uncertain terms that age-related memory decline, which doesn’t impact on people in a significant way, was quite different – “ a different beast” as he graphically put it – from Alzheimer’s disease.  It is so good for an authority to state this categorically on prime time radio.

Overall, I’d say Dr Ridley’s reaction to the news of a breakthrough in memory retrieval was cautious excitement.  He was quite clear that the “contrived but very clever system of optogenetics” used by Professor Tonegawa’s team was “very, very unlikely to ever be useful in humans.  But he was optimistic that in the long-term such nerve damage in humans could be reversed – through “different routes”.

“What one is looking at,” he said, “is strategies to understand and hopefully repair the damaged connections in the early stages before it is too late”.

I respect the research director’s caution.  I applaud the extraordinary scientific breakthrough of the team led by Nobel prize winner Professor Tonegawa, a man the Times lauded as “a master of memory” in its leader column.  And I agree with the leader writer who concluded, “We can only wait and hope.  In the meantime, the researchers should be congratulated on another remarkable display of the power of fundamental science to answer questions the rest of the world had never thought to ask”.  I am grateful that this time the question they sought to answer was on a subject so close to my heart.

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Sporting Memories

Leatherhead Ladies Seconds (aka The Lipstick Eleven) 1996. I'm front row, second from left.

Leatherhead Ladies Seconds (aka The Lipstick Eleven) 1996. I’m front row, second from left.

I played hockey for years, first at school and then – from my mid 20s until I was about 40 – for Leatherhead Ladies second team in Surrey. We were otherwise known as the “Lipstick Eleven” (which says it all) and even now if I pass a pitch on a Saturday afternoon I’m swept back to the days of short corners and penalty shots, of rasping lungfuls of freezing air, of orange segments at half-time and jugs (yes, jugs) of G & T on the rare occasions that we won. My recollections bring with them the unforgettable odour of the changing room: an evocative mixture of Deep Heat and dried mud, along with top notes of Revlon’s “Charlie”.

Sporting memories are powerful things. They can also be beneficial and illuminating. Take a look at this short film about Bill Corbett, “a quiet gentleman who had dementia”. To a brilliant soundtrack which begins “One day baby, we’ll be old … and think of all the stories that we could have told” – a series of captioned photos tell Bill’s extraordinary tale.

Though it was known that Bill had been a keen footballer, it was only when people trained in the art of reminiscence therapy (a way of coaxing reactions from those with dementia) sat with him and showed him old photos that they discovered he’d played for Celtic. In fact, Bill had once played for his country. On 10 October 1942 Bill Corbett played for Scotland against England at Wembley, where his team held their opponents to a goalless draw. Bill’s partner in defence that day was none other than the legendary Bill Shankly.


While not everyone has a story as extraordinary as Bill Corbett’s (who passed away in 2011), we all have one.  And this is the premise behind Sporting Memories Network, a social enterprise set up by Tony Jameson-Allen and Chris Wilkins.  The network supports community groups throughout the country enhance the lives of older people living with dementia, depression or loneliness by helping them to recall memories of watching or playing sport, using reminiscence techniques and sporting memorabilia and photos.

This simple idea has spawned numerous unforeseen positive consequences: once memories are sparked, so too, it seems, is the desire to “give it a go”, to play a bit of walking football or table tennis. Groups benefit from physical as well as emotional, social and mental activities; while men – generally reluctant to participate in therapy – are keen to come. Sport links the generations, uniting old and young in a shared love of the game, whether it be tiddly winks or rugby. Reminiscing through sport, like Heineken beer, reaches the parts that others can’t.

So successful has the network proved that in the four years since its launch it has trained over 500 people to spread the good work, joined forces with over 400 partner organisations (from sports clubs and schools to libraries and local councils), won £1.3million worth of grants and collected 7,000 sporting memories from individuals including Olympic gold medallists Sir Steve Redgrave and Dr Katherine Grainger, and the Prime Minister (who remembered, in his younger, more carefree days, watching Red Rum win his third Grand National in 1977).

The story began when Tony and Chris met, by chance, at a dementia conference in 2009 and realised they shared the same aim: to make life better for those with dementia, depression and other mental issues. The two came from different backgrounds: 48-year-old Tony, a Yorkshire man, trained as a psychiatric nurse and became a clinical team leader working extensively with people with dementia; while Chris, 54, who lives outside Edinburgh, wanted to use his advertising production skills to develop a personalised online life story album to help those with the condition.

When Tony was made redundant, the pair decided to join forces. They knew that they wanted to fuse sport, which they both loved (Tony was once a professional golfer), with reminiscence work, with which they were both familiar.

replay-sporting-memories-networkIn November 2011 they registered the Sporting Memories Network (SMN). They had few materials and no money. Undaunted, they submitted a bid to the Silver Dreams Lottery Fund to run the newly formed company in three settings – NHS organisations, care homes and community venues such as day centres. Some 1,500 ideas were submitted; the network made it to the last 70 but was pipped to the post by Hen Power, which I blogged about here.

However one of the care home managers with whom Tony and Chris were working helped them develop a proposal to trial the network in Leeds and this time they succeeded in winning a grant of £20,000 to work in 15 care homes across the city. It gave them the chance to evaluate what they were doing, and to gain the support of Leeds city council, Leeds United football club, Leeds Rhinos and Yorkshire county cricket club. The manager of each club recorded a video memory and they launched the project at Elland Road, the city’s famous football stadium. Celebrity sporting endorsements and the immediate popularity of the scheme proved that Sporting Memories Network was a winner.

From then on, as Chris Wilkins explains, the story of the network is one of happy discoveries. “When we started SMN we thought it was all about wellbeing and reminiscence – just conversations really – but the network produced many more positive benefits. We knew reminiscence worked for people with dementia, but around sport it just worked really, really well”.

Tony describes how, without realising it, in sport they’d stumbled on a form of reminiscence gold. “There are so many different communities,” he tells me. “The sport itself, the playing, the watching, the travelling, the fans, the teams, the clubs, the stands and terraces – and then there are all the sensory triggers such as the smell of Winter Green, the iconic radio commentaries, the pie and Bovril at half-time”.

SMN produces 200 copies of the legendary "Sporting Pink" to spark memories & conversations within its groups.

SMN produces 200 copies of the legendary “Sporting Pink” to spark memories & conversations within its groups.

Every Saturday evening SMN publishes 200 copies of the (now mostly defunct) “Sporting Pink” newspaper, complete with a Spot the Ball competition on the back page.

Superstars were soon offering support and sharing memories. Formula One driver David Coulthard was one of the first. Along with other celebrities such as Commonwealth gold-winning athlete Liz McColgan and legendary Scottish golfer Sam Torrance, Coulthard launched the network’s various Replay websites that enable individuals to share sport-specific memories – and are also available on the Replay Sporting Memories app.

Tony and Chris’s energy and passion have driven the network’s extraordinary and rapid success. In 2014 they pitched a “blue sky idea” to make the Grand Depart of the Tour de France in Yorkshire, dementia friendly.  Despite the lack of funding or equipment, the two men located local Dementia Friends champions to answer queries and interview spectators about their cycling memories at 15 of the race hubs. They found nine post graduate media students who partnered with BBC North to produce a one hour BBC Radio Leeds documentary.

Last April they secured a £450,000 grant from the Life Changes Trust in Scotland to establish 55 local Sporting Memories Network groups across the central belt of Scotland and employ four part-time project officers. A £150,000 grant from Comic Relief is helping to develop digital sporting memories resources such as e-books and apps in the north-east of England in hospitals, housing associations, libraries and people’s own homes.

This year has already seen two huge wins: a partnership with the National Football Museum and the Football Association to help gather the nation’s memories of the 1966 World Cup; and a £483,000 Big Lottery Fund grant to train volunteers in London, Gloucestershire, Hampshire, Manchester and Yorkshire to establish 64 groups over the next two years in conjunction with organisations such as libraries, sports clubs and housing associations.

Sport is a famous leveller of people – as I know through my days with Ladies Leatherhead Seconds, where top flight PAs rubbed (bruised) shoulders with youngsters working in the local Harvester. It is also, as the Sporting Memories Network shows so well, a connector of people. Its benefits – physically, mentally and emotionally – are numerous and oft-repeated. When combined with the positive effects of skilful reminiscence work, the potential for good, for the wellbeing of those who need it most, seems limitless.

Field Hockey (1)


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My New Year’s Resolution

Iain & Roy appear in a wonderful Tumblr story by photographer & journalist James Hopkirk

Iain & Roy appear in a wonderful Tumblr story by photographer & journalist James Hopkirk

Carers have been much in my mind at the start of 2016.   I keep bumping into them, either virtually online or in the flesh, and they’ve got me thinking about my new year’s resolution.

For some time now I’ve been working on a newspaper piece about early (or young) onset dementia – when the person affected is under 65.  The stoicism shown by all the families I’ve met has been extraordinary.  Day in, day out, for every minute of every day – and often restless night – the dementia is there, like an unwelcome guest who will never, ever leave.

Yet the people I interviewed for my article rarely complained – though there was almost always a sadness about the spousal carer.  One wife told me she called her husband’s Alzheimer’s the “Cheshire cat disease” because she was watching him “fade and fade and fade”.  She described it as a “double bereavement”.  I – like thousands of others in this country – know a little of what she means.

There were flashes of anger amongst those I talked to, but this was more against a health and care system that doesn’t seem to recognise the needs of those living with dementia (be they the carer or the person diagnosed) than anything else.

Someone I’ve known far longer than the young onset group is Suzy Webster.  Suzy was one of the first people I met when I began blogging; she was speaking at a conference in London and told us how her mum (who has dementia) and dad had moved in with her and her husband and two young daughters in Chepstow so that they could have the “dementia adventure” together.  It was a lovely, positive phrase for what must, in all honesty, be a challenging life.

I’ve got to know Suzy a little over the past two years and I enjoy following her on Twitter and reading her occasional blogs.   Just before Christmas she and her family appeared in a film about their life.   Entitled “I’ll Always Be My Mother’s Daughter”, it’s just two minutes long, upbeat and laced with jaunty, old-fashioned music.

As the two women sit side by side on a small sofa you can see the bond between them, the familial likeness in their faces, their eyes – not to mention their eyebrows – and their mischievous smiles.

Short and sweet as it is, the film packs some serious messages.  Suzy says her mum’s dementia has been “life-changing” for all of them, that they take a team approach, with her girls learning to care for someone at an early age – “which is great” – while she is learning to slow down, to put her career on hold.

“What’s important is being here, being together, enabling mum to be with us here,” she says.   After a moment’s pause, with impeccable timing, her mum adds, “Forever”.    Julian Fellowes couldn’t have scripted or directed it better.  Do watch the film; it’s guaranteed to make you smile.

Equally moving, but in a very different way, is Iain and Roy’s story, told on Tumblr by journalist and photographer James Hopkirk.   The two men – 71-year-old Iain and 81-year-old Roy – live in a block of flats in Pimlico and until Roy’s sister Hazel died a couple of years ago they’d been on little more than nodding terms.

Iain's been keeping an eye out for Roy since his sister died. Photo by James Hopkirk

Iain’s been keeping an eye out for Roy since his sister died. Photo by James Hopkirk

After Hazel’s death, Iain realised that Roy’s confusion and depression were due to more than grief.  He managed to get his neighbour to a doctor where he was diagnosed with dementia.  Now Iain looks out for Roy.  “Where Iain leads, Roy follows,” writes Hopkirk.   “Roy is increasingly anxious, worrying about little things like his keys, glasses and medication. But with Iain around, he visibly relaxes – he trusts him so completely that even when he doesn’t always know what’s happening, if Iain’s there he knows it’ll be ok”.

In very few words and a series of quite brilliant photos, Hopkirk has caught the lives and told the story of these two men – of the self-confessed anarchist keeping an eye out for his older neighbour.    They have little in common, save a “deeply engrained aversion to the Conservative party” and “an appreciation of classic British tailoring”.  There’s tragedy and black humour, wit and mercifully unsweetened compassion.

“Initially, Iain says he was driven by a sense of responsibility, of duty – he couldn’t stand by and watch a man suffer. But over time they’ve become very fond of each other. Roy is his pal, he says, not his patient”.    Hopkirk’s words describe what it is to be dementia friendly, what it is to be kind, what it is to be human.

Two years on from my very first blog, I know much more about dementia.  I know that there are over 100 different types of it (the most common by far being Alzheimer’s disease).  I know that 45,000 individuals in the UK aged under 65 are living with some form of the condition.  I know – thanks to meeting people such as Agnes Houston, Ken Howard, Helga Rohra and Chris Roberts – that it’s quite possible to live a good life with dementia.  I understand, as I once never did, the sensitivities surrounding the language of dementia and how this contributes to the stigma that clings to it.  I appreciate the lack of awareness and depth of ignorance of this widespread, pernicious affliction, for which there is still no cure.

But after 24 months of writing almost constantly about the subject, the most important lesson I’ve learnt – what the editors of (the huge American website for which I now write) would call my biggest “takeaway” – is that those of us lucky enough not to have dementia can make the lives of those who do, far, far better than they currently are.   Simply by being a little more thoughtful, a little more considerate, a little more friendly.   In other words, kinder to our fellow men and women.    As a new year’s resolution, it’s hard to beat – and surely pretty easy to keep.


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Bravo! Again!

word dementiaIn one of my very first blogs I paid tribute to husband-and-wife actors Timothy West and Prunella Scales for having the courage to speak publicly about Prunella’s dementia, and for doing so in such a constructive manner.  Though acknowledging the difficulties, Mr West said the pair of them still had “a lot of fun”.  Since then the couple have appeared on television and radio, talking about their canal trips and helping to combat the stigma and confusion that clings to the condition.

Now, following a television appearance on Piers’ Morgan’s Life Stories, some in the media have suggested that 81-year-old Mr West compromised his wife’s dignity by talking about her “gradual disappearance” as she sat in the audience and then suggesting that it was okay to do so because “she won’t remember”.

I doubt they need it (they seem a brilliant, resilient bunch these Wests) but I’d like to support what they’ve done.  Not everyone in their position would have made the same decision.  When I wrote my first article about my mum’s dementia in the Sunday Express back in 2006, I did so under a pseudonym, mainly out of respect for my dad, who was so frail that I didn’t want to seek his permission or worry him at all.  No one knew who I was so it didn’t matter.

But a well-known acting dynasty such as the Wests have power and influence the likes of which a nobody such as me can only dream about (or fear).  What they are doing to raise awareness of this misunderstood condition is tremendous – and courageous.   Those of you who are old enough may recall how, in 1965, Richard Dimbleby (“the voice of the nation”) went a long way towards banishing the stigma which then surrounded what we used to call, in hushed tones, the Big C, by announcing on national television that he had testicular cancer.

To me, the Wests’ selfless sharing of their experiences is in much the same mould and, together with the valuable insights of other celebrities such as the late Sir Terry Pratchett (who had Alzheimer’s), helps to increase society’s understanding of the condition through the soft power of culture.

Shortly after the Wests first spoke out about 83-year-old Prunella’s dementia, Sarah Vine of the Daily Mail recounted a touching vignette of the pair she’d witnessed at a literary festival.  She said that they read together on stage quite perfectly.

“But the most touching performance took place during rehearsals.  West never took his eyes off his wife, making sure she knew the running order, patiently going over everything time and again, tenderly coaching her when she got in a muddle.  It was a humbling display of unshakeable marital love”. I don’t always agree with the Daily Mail’s view of the world, but I thought this was a lovely, astute piece of observation.

In another, very different, publication, journalist Rebecca Ley reviewed a radio programme on dementia in which Joan Bakewell interviewed her old friend Prunella Scales.  Writing in the Guardian, Rebecca described the actress’s voice as “a revelation”.

Though slightly slowed, it was still grand and full of warmth and wit, Rebecca said, and “immediately shredded any notion that her diagnosis has erased the person she used to be”, adding that the interaction between husband and wife revealed a marriage that was still very much alive.  “We need more of this kind of broadcasting, to shine a light into the abyss,” she wrote.  How right she was.

Rebecca honestly and very movingly recounted her own father’s final years with dementia in the Guardian and I’d urge anyone who hasn’t discovered her past columns to read them online.  She knows the pain and heartache of being a carer, and the soul-searching and strength needed to write about it publicly.

A few months ago I wrote a blog about a Radio 4 interview in which the Today programme’s resident Rottweiler John Humphrys talked to the wife of someone with dementia.  It was an extraordinary few minutes that revealed quite a different side to the normally cantankerous Welshman.  More importantly, because of the calm, insightful words of his interviewee Denise, it shone a penetrating spotlight on what it is to be the family carer of someone with the condition.  Taking my cue from something that Denise said, I called my blog “The Unending Grief of the Dementia Carer”.  I think it just about sums up what this thoughtful, articulate woman had to say – you can still hear the interview here.

Along with the never-ending grief, as anyone with a relative with dementia knows, comes pain, often confusion and almost always guilt.

So for commentators to heap more guilt on the Wests, strikes me as pretty low.  We are all different and we all have our own way of dealing with life’s ups and downs, dementia included.  I don’t know who it was who first said that when you’ve met one person with dementia, you’ve met one person with dementia.  But he or she was right. And the same goes for the relatives of those with dementia: our reactions are unique.

I applaud the Wests.  Their love for one another has been obvious for all to see and the decision to speak out will not have been taken lightly.   The actors’ carefully chosen words have more power and influence than most and certainly more than mine – and I offer them both, for the second time, a very loud, “Bravo!”

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What Flowers Remember & Children Teach Us

download (1)There is a poignant moment in “What Flowers Remember” when old Mr Clancy asks his 13-year-old friend, “Who will I be if I don’t remember my life?”   Needless to say Delia, a young narrator with a wit and wisdom beyond her years, has no answer.

Who does?  I certainly didn’t when my 82-year-old mother said the very same thing to me shortly after she moved into her nursing home.  It is just one of the many themes in Shannon Wiersbitzky’s short American novel that resonates with me.  Her book is aimed at readers aged nine to 14 but I loved it (and I’m four decades over 14).

This was partly because it is sensitively written by someone who quite obviously enjoys words as much as I do.  Shannon’s writing is lyrical and her deft weaving of flowers, seeds, renewal and growth into a story that is as much a touching coming-of-age story as an exploration of one of the most misunderstood conditions of our time, is very skilled indeed.

However the main reason that her novel works so well for me is because it comes at dementia from a child’s perspective and shows, above all, the power of making connections – whether through passing heirloom flower seeds through the generations, curating diverse memories or finding your first love.

Children, in their naivety, see things afresh.  Delia, seeing the changes in “Old Red” Clancy, her adopted grandpa, is as bewildered as he is – she has no knowledge of Alzheimer’s.  When the condition is explained to her, she finds the notion of Old Red forgetting his late wife Rosalea impossible to comprehend.

“No one could forget something that important to them.  They just couldn’t”.   It’s what we adults so often think when confronted with the truth of dementia; but instead of voicing our disbelief as young Delia does, we turn to anger or simply turn away – and stigma and fear begin to breed.

Delia, with a child’s enthusiasm, comes up with a plan: to collect Old Red’s memories and write them down for him.  In doing so she discovers wonderful, previously unknown facts about him – she also discovers that the elderly residents of Tucker’s Ferry seem to have all the time in the world and like nothing more than to chat.  She collects their stories and photographs of Old Red and, when he has to move into a nursing home, she takes them to him and creates what she calls his “remembering wall”.   She is of course enacting the very best in person-centred care and, in the process, showing younger readers what they might do were they to find themselves in her position.

alive! logo - largeIn its clever depiction of dementia, this novel draws out the affinity that exists between young and old.  It reminded me of the tremendous work being done through the intergenerational Paint Pals project of Alive!a Bristol-based charity set up by Tim Lloyd-Yeates, who very sadly died this year.

Four years ago Paint Pals paired seven older people with seven primary schoolchildren so that they could send each other postcards with paintings and short notes on their interests and experiences.  Today, Paint Pals sessions run across three counties, in nine care homes and local schools;  and as well as the exchange of postcards, three times a year the schoolchildren visit their elderly friends (some of whom have dementia) to paint and spend time with them.

The activities co-ordinator at St Monica Trust said that no medication on the market had the same impact on her residents as Paint Pals.   “I never cease to be amazed how children so naturally break down barriers and how such strong links can be built despite the generation gap.  The scheme is one of the best and most positive things we have at St Monica’s”.

The loving, mutually beneficial friendship between young Delia and Old Red in “What Flowers Remember” also brought to my mind a remarkable woman called Suzy Webster who, confronted with her mum’s condition, decided that her parents should come and live with her and her young family so that they could share her “dementia adventure”.

Suzy has spoken of how much she’s learnt from her daughters: “They just see my mum; they don’t think about who she was before and who she might be at the end”.   In a guest blog for Gill Phillips’  Whose Shoes? website Suzy quotes her six-year-old saying that dementia is just part of who grandma is – “She’s good at cuddling, that’s what is important”.

The affinity between young children and older people, particularly those with dementia, comes in various guises.  The practical world of the two groups is relatively small – mainly the world of the home and the garden – while their imaginary worlds hold infinite possibilities which others around them often fail to comprehend.

Both groups’ sense of time is unlike that of hard-pressed adults rushing about trying not to be late: the very young and the very old tend to live more in the moment, savouring the here and now, enjoying a chat (hence the elderly residents of Tucker’s Ferry being so receptive to Delia’s wish to hear their stories) rather than worrying about what was or might be.

But perhaps the most poignant affinity between the very young and those with dementia lies – as Suzy’s daughter so astutely observed – in their uninhibited displays of emotion.  When verbal communication is difficult (because of dementia) or undeveloped (as in very young children), other ways have to be found to relay feelings, which are still very much there.  Frustration and fear can lead to aggressive, distressing behaviour, of which Old Red shows one or two flashes, but I’m talking about positive emotions.

Cuddles and hugs are one way, eye contact and body language another.  Children are pretty good at these – unlike many of us more reserved grown-ups.  I’ve never been a very tactile person and as I sat with my elderly mum when her dementia rendered her immobile, speechless and seemingly unaware of anything around her, I was often at a loss as to what to do.

Now, through my writing, I’ve met people who speak of manicuring their mothers’ hands.  It’s an intimate, caring, literally touching thing to do and I wonder why on earth I didn’t think of it.  Being me, I read to mum from Daniel Deronda, though I’m not sure she heard.  I wish I’d reached out to her more, soothed her, caressed her, physically showed her the love that words could no longer convey.

Shannon’s fictional young narrator knew what to do.  While her mother talked to Old Red as he lay dying, Delia instinctively held onto his hand, gently rubbing her skin over his.  “I wanted to feel connected.  Somewhere deep down, I hoped he knew it was me”.

Ultimately, it’s the connections that we make with those with dementia – however big or seemingly small – that really count.  Children seem to grasp this innately, as do some adults.  I’m sorrier than I can say that, when it mattered most, I wasn’t one of them.  It’s taken the passing of years, numerous conversations with others more intuitive than I, and the clear, sweet voice of “What Flowers Remember” to tell me how I should have spoken my heart to mum in those final, difficult years.


“What Flowers Remember”, published by Namelos, USA and shortlisted for numerous children’s book awards in America, is available from Amazon in Kindle, Hardback & Paperback, with a portion of the proceeds of each sale going to the Alzheimer’s Association.

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The Father

The FatherWatching Florian Zeller’s brutally honest play “The Father” left me unsettled. It left me unsure as to who each of its six characters actually were, of where they were, and when they were there. It left me confused and emotionally drained. But boy, did it move me.

This award-winning work, translated from the French by Christopher Hampton and now playing to packed audiences in the West End, is an exploration of what it is to have dementia, from the inside out. It is sad with flashes of wit; it is challenging and quite often difficult to watch.

Yet – somewhat to my surprise – as the performance finished many of those around me rose to their feet in a standing ovation. I was still reeling from what I’d just experienced: for when watching “The Father”, we the audience don’t merely observe a man’s dementia progressing, to a very large extent, we enter his world.

We watch, perplexed, as André’s daughter Anne changes appearance (her part is at times played by a different actor); we try to work out if she is married or not (and if so, to whom); we wince at the jarring, disruptive sounds accompanying ever-longer periods of silent darkness between each short scene and, finally, as the once flamboyant André sits in his nursing home bed, clinging to his nurse and sobbing like a baby, we cry with him – at least, I did.

Such are the skills of the cast and James Macdonald’s direction that, despite the bleakness of its subject matter, the play has a driving, compelling intensity and a thin thread of black humour. It runs for 90 minutes without an interval and I can see why.

Kenneth Cranham as André is big in both stature and character, a once dashing man with an eye for the girls who wants to bat away his confusion like so many irritating flies. Only his ever-present, anxious frown gives him away. But even he can’t beat dementia. When he walks in unseen and overhears Anne and her husband – or is it her boyfriend (we’re all unsure)? – talking of a nursing home, he shrinks back into the wall, a shadow of his former self.  An image that is at once poignant and terrifying; none of us wants to walk in his slippered footsteps.

Claire Skinner (better known to me as the mum from TV’s “Outnumbered”) gives a sensitive, understated portrayal of Anne, a woman exhausted, riddled with guilt and pulled in different directions. One of her very first lines is, “We can’t go on like this”. Of course André isn’t listening, or if he is he doesn’t know what she means. She might as well be talking to a brick wall. Except this is her dad.

In a rare moment of stillness, Anne delivers a terrible soliloquy on a nightmare she’s had. As she watches André sleeping she feels “a wave of hatred” and imagines tightening her hands around his neck. What she says is hard to hear: too close to the awful truth of what dementia makes people do and say (and I’m not referring to those who have it).

One step removed, Anne’s husband Pierre stands apart, often watching. André’s not sure of him – and neither are we. Is he as sly as he seems or is it André’s (and our) paranoia?

“How much longer do you intend hanging around getting on everyone’s tits?” Pierre’s words to André are unspeakably shocking. And yet they are spoken. In front of an audience whose sharp, collective intake of breath could be easily heard.

Zeller’s cleverly structured and insightful play begins to show us some of what it is to have dementia; it casts an unrelenting spotlight on what it does to those who have it and their loved ones, which is unnerving. Deft performances, clean, spare writing from a master of translation and assured direction help to pull this off and keep the audience in its grip.

What I find more extraordinary is that, at 35, this comparatively young playwright has found the dank, mossy stones that lie deep within our souls and, unafraid of turning them over, revealed what they hide for all to see. Do go, but with tissues, a stout heart and a good friend.

“The Father” plays at the Wyndham’s Theatre until 21 November  


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What’s in a name?

whats in a nameWhen my mum moved into her nursing home the staff called her Kathleen because that was, actually, her name. But the truth is she was never called Kathleen, or Kathy, or Kate. My mum was always Kay.

As is often the case, mum’s entry into the home was the culmination of a traumatic few weeks and, for whatever reason – not wanting to seem petty or perhaps simply because I was physically and emotionally exhausted – I didn’t correct the manager when she called mum by the wrong name. And so, because of my lack of correction, Kay Kelly – already made vulnerable and confused by her dementia – became Kathleen.

A small thing at the time after all we’d been through as a family, but one that loomed larger as mum’s identity – the colourful, slightly eccentric, big-hearted, sharp-tongued persona of my irreplaceable mum – was subsumed by her dementia. The fact that staff at her nursing home called her Kathleen not Kay contributed to the sense of mum’s changing self. I didn’t see this at the time; I do now.

And so my eye was caught by this week’s headlines that the Care Quality Commission (CQC) had banned staff at Brackenley Care Home from calling their residents affectionate names such as “love” and “sweetie”. I’ve been around long enough to know that behind the headline lay a far more complex story – and it’s one that Andrea Sutcliffe, the CQC’s chief inspector of adult social care outlined in her latest blog, which is worth reading here.

Indeed, if you read the articles beneath the newspaper headlines, they make the same point as Andrea: that the CQC’s comment about the staff’s use of language was part of a broader criticism about the lack of respect observed at the home, including inadequate screening in a shower room.

What is certainly true – and what Andrea puts her finger on – is that the issue at stake here is that “people are called what they want to be called. Some will really appreciate affectionate terms of endearment, others will not”.   What we are talking about – as Andrea’s blog makes clear – is person-centred care, focussing on the individual (and his or her family).

The Daily Mail illustrated this with a full-page piece in which two writers gave their opposing personal views. Mandy Appleyard described her late father as shy and reserved. When he lay dying a teenage carer breezed into his home and addressed him as “my darling” and “my love”. Mandy’s mum, a retired secretary of the “old school”, politely told the carer to call her husband by his name, John, which she did.

Rebecca Ley on the other hand says that she “actively enjoyed affectionate names being bandied about” by well-meaning staff in her father’s care home. “They were scraps of comfort – for him and us – at a time when everything seemed to be falling apart”.

We could talk all day about the significance of language used in care settings, but what this particular “storm in a media tea cup” (to use Andrea’s phrase) reveals is the vital importance of person-centred care: of knowing the individual and providing him or her with appropriately tailored support. This, in turn, helps to protect and respect the person’s dignity.

For Mandy Appleyard’s mother, “carers assuming an inappropriate familiarity with the man she had loved for more than 60 years was one of the many small indignities she felt they faced in the dark days before my father’s death”. For Rebecca Ley, “a friendly ‘darling’ delivered with a smile was something to be clutched at”.

Both these writers’ fathers had dementia, a condition that often makes it difficult or impossible for those who have it to voice their own views, making them very vulnerable and their loved ones understandably protective of them.

My father didn’t have dementia but he was very ill towards the end of his life and unable to move, eat or speak coherently. He lived in his apartment looked after by a wonderful Zimbabwean carer called Martha. Until this week I hadn’t thought much about what Martha called my dad. In fact she called him “Daddy”.

Martha cared for my dad with unwavering devotion for three years and I wouldn’t have dreamt of asking her to call him Arthur or Mr Kelly. Perhaps this was because I could see that dad didn’t mind; he was an easy-going chap. Perhaps it was because, as I’ve written before, in dad’s difficult last months Martha, through the care she gave him, in many ways grew closer to him than his own family.

I don’t think mum minded people calling her Kathleen; I believe it’s what her mum called her as a girl. But – ironically, given that dad’s carer called him daddy – I know mum missed being called mum because she told me this during one of my early visits to her nursing home. It was one of those impossible, heart-stopping moments of which there are far too many when someone you love has to move into care.

It may be a shame that headlines sensationalise serious issues. At least they bring them to the fore. What is good about this particular story (stormy or not) is that it highlights the need for a person-centred approach to caring for the most vulnerable in our society.

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Alzheimer’s Daughter

image1Jean Lee’s memoir “Alzheimer’s Daughter” is at once a moving, highly personal and informative account of how the “brain-devouring monster” simultaneously swallowed up both her parents’ lives, and a universal story.  It offers solace, through experiences shared, to millions of people currently confronting the same impossible decisions and living through the same heart-breaking moments that this retired American teacher from small-town Ohio has known and of which she writes so well.

For this alone it is worth reading. (It is one of the best individual accounts of living with dementia that I have come across).   But it is far more.   Punctuating the sad, steady (and by now to many of us all-too-familiar) tale of decline due to Alzheimer’s with poignant wartime love letters between her mother and father, lends Lee’s memoir an added depth. She reminds us of the broader picture, of the generation-upon-generation that constitutes a family, of the never-ending cycle of life. And it is this that, for me, marks out her book.

It is based on a journal that Jean began at her older sister’s instigation as the two of them became increasingly concerned about their parents’ deteriorating mental states. With the first, early mention of the journal comes the first mention of an emotion that, above all others, seems to dominate the lives of those whose loved ones have dementia. Guilt.

Even though she’s recording events with her parents’ wellbeing uppermost in mind, Jean regards it as a betrayal, feeling as though she’s “gossiping about them on paper”. She agrees to her sister’s suggestion in order that Annette, who lives a thousand miles away, can be informed of events and the pair can work “as a team”.

The passage is an early indication of the thoughtful, thorough nature of its author and the importance to her of her sister’s support – she describes her as her “constant protector”.

Deciding to move one’s parents out of a much-loved, long-standing family home into sheltered housing or a care home is one of the hardest decisions any of us will ever take. I have written about it at length here – and the practicalities of the move itself are often equally traumatic. To do so alone (as I am determined that my only daughter will never be left in a position to do) must be much worse. Ming Ho, an only child, writes about it brilliantly in her blog

Reading her memoir one has a sense of Jean Lee’s wider life as the working mum of grown-up children and of her position in the broader family. In the midst of the heartache and remorse “of taking everything away from parents who had given us everything” there are moments of pure happiness, such as at her daughter Susie’s wedding. Jean describes how her parents Ibby and Ed seemed normal as they “laughed and giggled like lovebirds themselves” – and with their earlier love letters offering tantalising glimpses of the dewy-eyed young lovers they once were we are reminded of their own rounded selves, the people they were and still are, Alzheimer’s and all.

It’s a point well made when Ed, who survives Ibby by several months and whose dementia has “thickened to the point of being a solid wall with only little pinpricks of clarity coming through” nears the end of his life. His daughter knows that despite this she has much to learn from him. She puts it like this: “The most beautiful part of Dad was what still remained” – a man who found “giddy happiness in McDonald’s ice cream and sweet smelling hand lotion.

“How often did I completely ignore mundane things such as these in my life? I thought of how many times I might have been in the middle of a wonderful moment but I’d not recognised it because I didn’t fully engage”. It’s worth taking a minute to ponder Jean’s words (and if you’ve time, to read a blog I wrote about the power of these “Perfect Moments”).

And yet, for the most part, “Alzheimer’s Daughter” is a detailed account of the daily minutiae of caring for her parents, whose frustrating behaviour stretches Jean’s patience to its limits.

When her parents angrily refuse to accept their diagnosis Jean gives vent to her frustration and, shaking with emotion, yells at them – and immediately feels guilty. On the drive home neither of them will speak to her. “The scales had tipped – I’d become the enemy”.   Anyone with a loved one with dementia will relate to that.

But then read a passage towards the end of the book when Ibby, now living with Ed in a locked specialist Alzheimer’s unit, develops a habit of scraping her fingernails across the table and caking them with dirt.

For two lengthy paragraphs Jean meticulously describes how she washes Ibby’s nails using sanitising wipes, clippers, polish remover, manicure sticks and sweet smelling lotion. It’s a labour of love during which two thoughts run through Jean’s mind: “First, I thought I might be paying her back in some small way for all the times she’d cared for me using those hands. Second, I thought, I hope my daughter never has to do this for me”.

“Alzheimer’s Daughter” never shies away from the truth. Towards the very end Jean Lee’s pastor asks her if she’s given herself permission to fall apart after Ed dies. Her reply: “Absolutely not. I don’t believe I’ll fall apart, because Mom and Dad will suffer no more. I’ve fallen apart for the last ten years. Now I’ll put myself back together”.

How that resonated with me. As did virtually every line of the book – except to say its author may have been a better Alzheimer’s daughter than I was. But perhaps we all think that. And perhaps, ultimately, the overriding power of this memoir may be to show us that however flawed we are, however impossible coping with dementia often seems, we aren’t alone. It’s a beautiful book in which its author not only bares her considerable writing skills but her soul. Do read it.


“Alzheimer’s Daughter” is published by Gratitude Press and is available at Amazon for £8.54

Jean Lee blogs at

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Tim Lloyd-Yeates

Tim at session black and whiteTim Lloyd-Yeates was an extraordinary man whose life enhanced hundreds if not thousands of others because he was possessed of a rare combination of insight, generosity of spirit and sharp intelligence.  It hardly seems possible that he has gone – a gentle giant felled by acute myeloid  leukaemia at the far-too-young age of 48.

Many of us have followed his progress in the last few difficult months via his characteristically upbeat tweets.  Not one was negative.  Through the few tiny ups and many downs of chemo and the seemingly great news that his bone marrow transplant had grafted, he relayed what turned out to be the final chapter of his life.

As a tribute to Tim I’m reposting a blog that I wrote about him last October.   It was, I said then, the story of how a (very tall) man found his vocation.   That it proved to be so soon over is sad beyond words.

It started in 2000 when an indomitable woman moved into a care home that failed to see her for who she was.  Nine years later – via France and India – her son-in-law Tim Lloyd-Yeates set up a charity dedicated to improving the lives of older people in care.

Last year alone Bristol-based Alive! delivered 2,500 specialist dementia activity sessions – such as Virtual Wishes, Out of the Frame, Museums to You – in 300 care homes across nine counties in the South of England.  To make a donation in memory of its founder, click here.

The website’s homepage features Paint Pals, an intergenerational project in which children make monthly visits to a care home to paint and share time with the older people.   In a video, a care home manager describes how the children’s visits make her residents “come alive”.

Take a look and see for yourself.   Young and old have a connection: the youngsters have patience and tolerance; the older people are simply themselves, a bit slower than they once were, not so talkative or confident.  Each brings out the best in the other; both have time, without judgement – valuable assets that most working age adults simply don’t possess.

While Paint Pals is certainly clever, and very effective, it’s not complicated or expensive.   It’s simple, and it’s largely about people making connections – which brings me back to the beginning of the story: to Tall Tim, his mother-in-law and her inadequate care home.

Shirley was 62 and had brain tumours, speech dysphasia and dementia.  Tim and his wife were expecting their first child and Tim was working in the City.    Two days after Shirley went to live in a care home recommended by her GP, Tim visited her.  He was struck by the fact that the home was operating at two speeds.

“The staff were running about with too much to do, while the residents were moving around in slow motion – and there was no connection between the two,” he explained.   The old people were sitting in a circle, staring into space, in a room heated to 90 degrees.  At 9.30am Shirley was watching TV from a wheelchair.  Tim had never seen her in a wheelchair before.

“Shirley was an indomitable woman,” he told me.  “She didn’t own a big TV, she was a radio person who loved being outdoors.   So she was receiving the antithesis of everything she would have wanted – and what this told me was that the care home didn’t know who she was”.   A realisation that proved the catalyst for all that Tim went on to achieve – at the heart of which lies (if you haven’t already guessed it) good old-fashioned person-centred care, with a bit of up-to-the-minute touchscreen technology thrown in for good measure.

For though Tim intervened to improve matters for his mother-in-law, her final months spent living in care weren’t good, and Tim knew it.  “I was 35 at the time and it left me with a burning sense that everyone, especially me, could have done better.  It fired me up and stayed with me”.

Over the next four years Tim gave up his City job and, using the small inheritance that Shirley had left them, the family travelled to India and France, where they lived for four years.  All the while Tim was reflecting on his mother-in-law’s bad experience and learning everything he could about health and social care policy in the UK, and about dementia.

Once back in England, Tim put his newfound knowledge into practice.  He became the general manager of a company facilitating music, poetry, quizzes and physical activities in various care settings – and he found his vocation.

“For the first time in my life I felt that I was in a place where I belonged.  I discovered I had a talent and a desire to connect with older people and those living with dementia”.

When the company franchised the model Tim decided to leave.  He was “as skint as a church mouse” and had a young family to provide for, but he had a vision.   He didn’t view the work he was doing as a business, but a social service.

He started phoning care homes in the south-west and as soon as one of them expressed interest, he armed himself with a wheelie bag full of song sheets, quizzes, poems and a CD player and set off on public transport to meet them.  Once inside, he engaged with the residents, many of whom had dementia, by kneeling down so that he was at their eye level and using non-verbal methods of communication to gain their confidence.   Every home he visited in those early days remains a client – and everyone in them called him Tall Tim.

alive! logo - largeThree years into this form of private practice and with the help of two pivotal people, Philip May and Richard Pendlebury (both remain involved), Alive! became a registered charity.  It now has ten staff and 15 presenters skilled in the Arts and non-verbal communication techniques who, between them, facilitate thousands of activity sessions and have trained 500 individuals in 70 care settings to deliver the sort of respectful, stimulating and person-centred care so sadly lacking for Shirley.   Tim told me that training others to continue the work was vital; otherwise, the beneficial effects of the sessions would be merely transitory.

In 2009 the story took another twist when Tim met a care home resident called Dorothy.  She was confused and, seeking to calm her, he asked what one thing she would really like to do.  When Dorothy said she wanted to see the Bay House hotel in Scarborough, Tim thought of the iPhone he’d just bought.  He took it from his pocket, typed in Google maps, found the hotel and showed it to her.  Dorothy instantly began telling him, lucidly and fluently, all about this significant place from her past.

It was, said Tim, a light-bulb moment.  “I had the first inkling of what the Internet and intuitive touchscreen technology could do for older people”.   A year later Tim and Andrew Morris launched Memory Apps for Dementia – a partnership that identifies and uses touchscreen technology to improve the lives of those with memory problems.

Now iPads form an essential part of Alive!’s work.  “It’s the people in the room who have the knowledge,” Tim said.  “They hold the answer.  It’s easy to get caught up in the activities – in Paint Pals or iPads for their own sake – but they are just tools, just a bridge to the person who has lost his or her energy or identity”.

The person – the individual – holds the key to everything that Tim, Alive! and Memory Apps set out to do.   As he told me, “Everyone is unique.  Let’s stop pretending otherwise.  How can you serve people if you don’t know who they are?”

It was a typically spot-on question from a man I was privileged to know and whose story, when I wrote it nine short months ago, I never dreamed would be so cruelly cut short.  It’s left to the rest of us now to ensure that Tim’s legacy for those who are old and frail or who might have dementia lives on (tall, proud and wonderful as ever) through his work.  To donate to Alive! click here.

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The Doctor’s Dementia

Dr Jennifer Bute

Dr Jennifer Bute

If you Google Dr Jennifer Bute the first entry you see is for her website.  Its title is “Glorious Opportunity” and in many ways it tells you all you need to know about this remarkable woman.

Formerly an executive partner in a large GP practice in Southampton, Dr Bute was diagnosed with early onset Alzheimer’s at 63, and she describes her condition not in the negative terms we’re so used to hearing but as “an unexpected gift”.

So you’ll understand why I was very interested to hear her in action on BBC Radio 4 this week.  My expectations were high: they were exceeded.

In half an hour of clear, often witty conversation, devoid of overblown soundtracks or clever broadcasting techniques, she revealed what it’s like to have a condition that is today being talked about more than ever before and, more importantly, being discussed in appropriate, informed and helpful ways.   Nowhere more so than in “The Doctor’s Dementia”, which I strongly urge everyone to listen to.

It started with the insistent ring of a telephone and Dr Bute’s description of how she once tried for 40 minutes to stop her phone ringing before she realised that she was having an auditory hallucination.  We listeners were immediately plunged into the difficult, confusing, some might say frightening, world of someone with dementia.  Dr Bute also hears a cacophony of typewriters (as did we) and babies crying (ditto).  It was all part of what she calls her story, of what she’s learning as she experiences dementia.

And it is this – this knowing the condition “from the inside” as well as from the outside, as a professional – which gives her such a rare perspective on it.  She considers this to be “a privilege”.  I’m not sure that everyone in Dr Bute’s position would share her view, but it certainly makes her a formidable ambassador when it comes to increasing awareness of, and improving attitudes towards, dementia.

Her language is lucid, with the well-ordered structure of a medical professional, and still reveals – a decade after she first developed Alzheimer’s – an impressively sharp brain.

Having outlined how it all began when she got lost trying to find patients’ houses (then the surgery and finally her own house), she tells us what she did once she’d been diagnosed.  It is simple, obvious (once she’s said it) and highly effective – as many genuinely dementia friendly actions often are.

She produced leaflets for her three married children so that they would understand what was happening to her.  She also gave them to her friends and acquaintances because she discovered that when people found out that she had dementia they avoided her.  “It’s not that they don’t want to talk to you, but they don’t know what to say or how to cope”.

Stigma, as I’ve written before, stems from a toxic combination of ignorance and fear: inform others and their fear begins to dissipate.   Dr Bute understood this.  And yet she tells us that she is ashamed of how little she knew about dementia when she was a GP.  “I didn’t know what I didn’t know”.

And now she is an informed and active campaigner who is passionate about helping others understand this misunderstood condition.  Her website, run by her son who lives in Ukraine, features a video in which she describes her personal experience, as well as tabs for resources (including for children, carers and end-of-life), teaching modules and fascinating information on Japanese memory groups, which are based on the Japanese ethos of high regard for older people, (about which I’ve written before).

Over the next few minutes this down-to-earth woman tells us – in her practical, no-nonsense way using personal anecdotes and incidents – what dementia actually is, the individuality of each case (different coloured front doors in the dementia friendly village she and her late husband moved to didn’t help her recognise her own, but placing a familiar bronze figurine outside it did), how it affects those who have it and their families, and how best they can be helped.

She chooses her words carefully, explaining that there is an “emotional unzipping” when you have dementia as feelings become more intense.  She finds this difficult because, as a GP, she was very much in control.   She says she gives herself a talking to and puts on music to “regroup” – a phrase she prefers to the perhaps more patronising “calm down”.

Like so many others with (and without) dementia, she believes it is very important to use the right words.  “You live with dementia, you don’t suffer with it; we are not victims, we are people who happen to have it and the people who look after us are not our carers, they’re still our wives, husbands, daughters and sons”.

She’s very much worth listening to, Dr Jennifer Bute.

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A Little Bit of Magic Down Lambeth Way

hlc3I arrived at Lambeth’s Healthy Living Club at the same time as 75-year-old William.  He couldn’t find his wallet to pay for his transport.  No matter, Dave Bell, a volunteer, was on hand to lend him the money.   Later I saw Dave making sure that William, who has dementia, was okay to get home.  Before I’d even set foot in the club I’d seen its values in action.

For this is not somewhere that “provides care”; there are no carers and cared for, no them and us, and certainly (thank goodness) no service users.  Instead, I met a group of people who have gradually evolved into a community and become friends.  At their heart is a slight, Italian woman with curly jet black hair, a vision and a fierce determination.  She’s called Simona Florio and I’ll return to her later.

The club is more like a series of parties where forty to fifty people – most of whom have dementia or care for someone who does, and who are as varied in their ages, culture and ethnicity as Lambeth itself – come together every Wednesday at Lingham Court, an extra care housing complex.  Here they enjoy home-made lunch cooked on the premises, singing and music, a bit of impromptu dancing if it takes their fancy, quizzes, poetry and – I can vouch for this – a jolly good laugh.

Soon after I arrive 38-year-old Laurent Mendy takes a seated exercise class.  His energy matches Simona’s and the Frenchman tells me he looks forward to Wednesdays because they’re much more fun than his normal work for corporate clients.  “You fall in love with them,” he says of the Lambeth group.

His words echo those of resident musician Melanie Jones.  “It’s a great joy for me being here. Everyone is always willing to give things a go and there is a quite unique level of optimism”.

hlc group

Shelley Russell, who has been volunteering at the club for two years, says she puts everything behind her when she comes to the club “and just gives out love – it’s like coming to see old friends”.

I’m beginning to wonder who the real beneficiaries are here, but then I remember that this is the whole point.  “We are a community of individuals who help each other when we meet,” says Simona, “but our motivation for meeting is not to provide or receive care. Therefore we are not care providers, and it is this that makes the Healthy Living Club a model of self-care”.   And therein, she might add, lies its secret.

Ann Fitzgerald, 78, has been coming with her 79-year-old husband Patrick for about two years.  She tells me that she and Patrick used to dance, go to the theatre and play bowls, but when he was diagnosed with dementia they were suddenly cut off.

“It was very lonely.  When we come to the club people welcome us and make us feel worth something.  It’s a very warm feeling and so important because otherwise we feel isolated”.

Simona (R) a pocket-rocket-fuelled inspiration.

Simona (R) a pocket-rocket-fuelled inspiration.

The story of how the Healthy Living Club came about is one of triumph over adversity, of something wonderful being born from the ashes of loss.  Its plot reveals what can be achieved when humans come together – not with labels and demarcation lines, but as individuals who look out for each other – and its author (though she would never say so) is Simona.

The tale began in February 2012 when it was announced that Lambeth’s Healthy Ageing Café, run by the Alzheimer’s Society and funded by the local primary care trust, was to be closed.  There were, says Simona (who was its co-ordinator at the time) “floods of tears”.  For many of those who attended, the café was their only source of social contact; they described it as their lifeline.

They weren’t the only ones upset at the café’s closure, so too were its volunteers and the Lingham Court residents, some of whom attended, and still do (including 101-year-old Edna, who I met when I visited).

It was Simona who realised that the group didn’t need to be comprised of “service users” and “service providers” to continue, they could simply meet because they wanted to.  “I knew that it wouldn’t be an easy ride and that I would have to do a lot of unpaid work and even build up some personal debt,” she says.  “But I had to find a way to keep the project going; I just couldn’t let down all those people or the spirit that united us”.

And so, on 4 April 2012, the Healthy Ageing Café was reborn as the Healthy Living Club.   Its continued running has unearthed hidden talents in its members who, led by Simona, have established it as a charity, promoted it on social media and submitted bids for funding.

hlc 6A few days after my Lambeth visit I attended something altogether different: a seminar on improving care for older people, where speakers included some of the big guns in the sector.

It focussed largely on the integration of health and social care.  What really interested me was the suggestion (made more than once) that this aim could only be realised through a small-scale, bottom-up approach, not a large, top-down one.  I’ve been saying this to anyone who will listen for quite a while now because, in the course of my writing, I’m lucky enough to encounter numerous examples of small, grassroots enterprises that showcase the very best of dementia care.

Truly person-centred, co-ordinated care (which, incidentally, is how Andrea Sutcliffe of the Care Quality Commission told the seminar she prefers to talk of integration) has, almost by definition, to be small-scale, flexible, tailored to the individual.

Nowhere is this more true than for people with dementia and their carers; nowhere is it better illustrated than at the Healthy Living Club.

In this film for the Health Innovation Network, Dave Bell, who is also an Admiral Nurse (a specialist dementia nurse, focussing on the needs of carers of those with dementia), outlines what the club does and unwittingly gives a wonderfully human description of the Holy Grail that is integrated health and social care.

hlc 4“If there was no Healthy Living Club,” he says, “there would be a greater reliance on statutory services such as GPs, A & E and social services.  The club provides a level of activities, social contact and stimulation that creates, like a ship, a wake of well-being”.

It’s a wonderful image with the added benefit of being true.  The club has caught the eye of others, such as the College of Medicine and the Social Care Institute for Excellence, who are far more knowledgeable about such things than me, and their reports (on the club’s excellent website) validate Dave’s words and are well worth reading.

There’s no doubt that a little bit of magic happens once a week down Lambeth way.  It’s sprinkled with the sweat and tears of Simona, a pocket-rocket-fuelled inspiration of a woman.  If you’d like the magic to continue and the music to play on, please vote here.

In doing so you will be helping to ensure that Melanie’s rhythm and percussion sessions don’t fall silent when the current funding runs out – and with just two or three clicks of your mouse, contributing to something very special indeed.hlc logo







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91-year-old Les Hadley of Poppy Lodge Photo: Creative Commons

91-year-old Les Hadley of Poppy Lodge
Photo: Creative Commons

Two moments stood out for me as I watched the first of Channel 4’s three-part Dementiaville series, billed as a programme exploring a radical approach to dementia treatment being used in a Midlands care home’s specialist unit called Poppy Lodge.

The first was when Marie, whose 56-year-old brother has a rare form of the condition called Pick’s disease, said of her younger sibling, “I took him to school for the first time, now I’ve had to take him into a care home – I can’t tell you how sad that was”.  Bound up in that sentence is all the grief, confusion and disbelief that comes when someone you love has dementia.  I know because my mum lived with it for 10 years before she died in 2012.

The second was when Jean, struggling with the fact that she’d had to move her husband of 58 years into Poppy Lodge, said she’d dared not look back at Bob as she’d left for fear she wouldn’t be able to walk away.  Jean’s words brought back painful memories of when I used to swallow hard and stride quickly out of my mum’s nursing home, eyes front, fearful of being undone if I saw her watching me from the window.  Dementia is hard to live with for everyone involved, in so very many ways.

Yet this hour-long programme, with its emphasis on a model of care that sees carers entering into the perceived reality of those with dementia – be it a Riley car factory or a former matron’s hospital – managed to be person-centred and positive.  It probably did more in 60 minutes than almost anything else I’ve seen or heard to redress the media’s often negative portrayal of a terminal condition that those of us in the UK who are over 50 now fear more than cancer.

As such it is greatly to be welcomed and I look forward to watching the next two episodes.  A scan of the #Dementiaville timeline on Twitter showed universal praise for the first one, with many tweets wishing that Craig Edser, Poppy Lodge’s activities-co-ordinator, could be cloned and placed in every care home in the land.   From what I saw, I’d have to agree.

And yet, and yet.   I wish there had been a little more grit, a little more scratching under the surface of what dementia is and what it does to families – a closer exploration of what lay behind the complex emotions expressed through the haunting words of Jean and Marie.

This could just be the journalist in me coming out.  It could be that the next two episodes will address my concerns.  Or it could be that the programme affected me as it did because, over two years after my mum died, I still feel the guilt of placing her in a nursing home that, unless I’m much mistaken, wasn’t a patch on Poppy Lodge.

I remember the phone calls I received from members of staff telling me that mum had been hitting other residents with her walking stick – and my initial reaction of horror and disbelief rapidly giving way to panic as I realised that I may have to move her to another home.

I remember the woman in mum’s dementia wing who used to screech and wail.  Her carers – not nearly as well trained in the condition as those in Poppy Lodge and whose English (dare I say it) barely allowed them to communicate with me, let alone with those with dementia – did their best to pacify the wailing woman, but her cries rarely stopped.

I longed to know how Craig would deal with someone whose dementia made them more belligerent (more like my dear old mum was for a while) and less seemingly endearing than Les, John or Effie (the Poppy Lodge resident who thought she was matron).

I can already hear my critics saying that I can’t have it both ways: I can’t wish for more positive media stories and then carp that a programme is, in effect, too positive.  But touches of shade highlight the sun’s strength.

For me, watching Dementiaville seemed a bit like being transported in a very fast car over rough terrain in order that I wouldn’t notice the bumps.  This was probably largely due to the soundtrack and editing.   So my reservations may simply be because my world is words, not pictures, and this was TV.

Like many who took to Twitter, I too wish there were more Jo-Annes and Craigs in our country’s care homes to take residents with dementia on regular swimming trips and extend them such patient, thoughtful care.

I have nothing but respect for everyone involved in the programme.  I just wish that some of the roughness, the rucks and ridges that must exist in Poppy Lodge – because, quite frankly, dementia is like that – hadn’t been quite so slickly smoothed over.

Had the film’s makers allowed a little more grittiness, a few more awkward, difficult moments (not sad ones, there were plenty of those) to make it onto the screen, a very moving programme would have been made earthier, realer and better for me.  Though, judging by Twitter, perhaps not for you.

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Asset Value

1. sitraMany of the pieces I write on dementia are about joining the dots, making connections between what different people are doing in various parts of the country, or even the world.

Never has this been more true than at a recent conference held by Sitra – a charity that promotes healthy, independent living – where I encountered a number of groups and individuals who, while they had diverse challenges, goals and jobs, shared values that are the common denominators of the very best dementia practice.

Take Shaun Webster, a charismatic grandfather from Yorkshire who, before the recent general election, worked with then Care Minister Norman Lamb and chief executive of NHS England, Simon Stevens, to improve opportunities for people with learning disabilities.

Asked in an interview about what pointers he would give the NHS boss on how to drive through change for people with learning disabilities, Shaun (who has learning disabilities himself) said, “You need to involve us at all levels to sort this out”. His approach reminds me of several people with dementia I know whose mantra is “Nothing about us without us”.

Erin Fahey, Shaun Webster, Jai Rae & Susan James of CHANGE

Erin Fahey, Shaun Webster, Jai Rae & Susan James of CHANGE

Shaun, just like his colleague Sarah James who also has learning disabilities, is (to coin a phrase) an expert by experience and at Sitra’s conference in London I saw the two of them in action with a couple of their co-workers from CHANGE, a Leeds-based human rights organisation led by disabled people.  Both are paid an equal salary and have equal status to their non-disabled peers.  

The quartet used drama to explore today’s attitudes to employment and to show how an inclusive, can-do, co-production and co-led approach ensures that the workplace is a more productive environment – for all concerned, not just those with learning disabilities.

How serendipitous then that on the very day I was writing this blog the Joseph Rowntree Foundation announced that in a ground-breaking project, over the past two years a panel of people with dementia has been advising it on its community grants applications.

Inclusion and co-production lay at the heart of another of the presentations at Sitra’s conference which, while spiced with variety, had at its core the principle of coming together in order to go from #strength2strength – our Twitter hashtag for the day.

Martin Simon advocates the asset-based approach to community development.

Martin Simon advocates the asset-based approach to community development.

As a pioneer of the co-production of public services, Martin Simon chose as the provocative title for his talk, “Do no more harm to communities in the name of helping them.”   He urged us instead to adopt an Asset-Based approach to Community Development (ABCD).

Martin says that with the ABCD approach, “Each person is recognised for the wealth of practical experience, insights, knowledge, skills and local connections that she or he brings to the table”.  It’s an inclusive way of living that involves asking, “What can I do to enhance what you do?”

A question that reminds me of numerous blogs I’ve written.   For in its asking lies the essence of what it is to be truly dementia friendly.  It is the very opposite of writing off people because they are in some way different from us and instead seeing them for who they are.

Jayne Goodrick & her husband Chris Roberts.

Jayne Goodrick & her husband Chris Roberts.

Chris Roberts, who has dementia, was at Sitra’s conference with his wife Jayne Goodrick.  “It is vital to build a relationship with a person with dementia in order to achieve good communication,” he said.

Suzy Webster, who lives with her two young daughters, her husband, father and 68-year-old mother, has spoken and written of the numerous difficulties and occasional joys of living with dementia (with which her mother was diagnosed a few years ago).

In conversation with dementia communication specialist Sarah Reed, Suzy told the conference about the ups and downs of her mum’s recent cataract operation.  She told us how the power of the Twitter community ensured that the operation, which was about to be delayed by several hours, took place on time (crucial for someone with dementia for whom changes in routine can be very disorientating) and that, despite the red tape, Suzy was allowed to be with her mum throughout, thus calming and comforting her.

Listening to the story I was struck by how different communities – be they on Twitter, within society, in shops, busses or hospitals – need to follow Martin Simon’s advice and ask how they can make things better for others.  Sometimes it seems that institutions, workplaces, transport systems and even hospitals set up bureaucratic barriers and obstacles where they should be pushing them out of the way to help people (whoever they might be) to travel as smoothly as possible to wherever it is they need to get.

Many other conference speakers demonstrated this principle in action – from Beba Parker of the Time to Change programme, which challenges the stigma and discrimination surrounding mental health, to Jimmy Carlson and Peter Yarwood whose powerful presentations revealed just what can be achieved when we focus on an individual’s strengths rather than his or her weaknesses.

All credit to Sitra and its indefatigable and witty chief executive Vic Rayner for bringing together a group of people who each in their various ways reminded us all to value each other for what we have to offer.


4. sitra



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Ringing up Two-for-One Success Stories in Dementia Awareness Week

The Dementia Friendly check-out is  in pride of place and clearly signed

The Dementia Friendly check-out in Chester’s Frodsham Street store is in pride of place and clearly signed

This blog is dedicated to Tommy and Tony.  Two men who each, in their very different ways, are helping to improve the lives of people with dementia.

First up is Liverpudlian Tommy Dunne, who this week – Dementia Awareness Week (#DAW2015) – opened what is believed to be the first dementia friendly check-out in a Tesco superstore in Chester.

A story told to me by Tommy, diagnosed with Alzheimer’s disease four years ago when he was 58, shows just how valuable such a check-out will be – bear in mind that, because of his dementia, loose change “makes no sense” to Tommy.

When he and his wife drove to a supermarket to pick up a couple of things Tommy (unusually) ran in to buy them while Joyce waited in the car.  The shopping came to £1.43 so Tommy showed the cashier his dementia card, which explains that he might need some help, and held out a handful of coins for her to take what she needed.

The girl looked at Tommy’s card and promptly shouted to a colleague, “Hey Olivia, this man’s got dementia – he needs help”.  I hardly need Tommy to tell me, as he does, that this was a “I wish the floor would open up and swallow me moment”.

Typically, Tommy doesn’t blame the cashier but the store, for not giving her dementia training.  To me, her reaction sounds as much to do with a lack of common sense or kindness than training, but this is Tommy’s story not mine.

Chester Tesco's check-out was v confusing for people with dementia

Chester Tesco’s check-out was v confusing for people with dementia

One thing that Tommy and I do agree on is the benefits the Tesco check-out will bring.  “The confidence that knowing these types of checkouts are available will give family carers and people with dementia a confidence and self-belief that they can use these shops and not feel as if they are outcasts from society,” he says.

Tesco’s dedicated check-out can be traced back to Andy Tysoe, a memory nurse at the Countess of Chester hospital who also works with the council to make the borough more dementia friendly.

Andy, a Dementia Champion, has created over 4,000 dementia friends and delivered over 100 of his tailor-made #dementiaDO training sessions which incorporate both NHS and Alzheimer’s Society features.  When he suggested that they introduce a dementia-friendly check-out, the management agreed.

The check-out after its Dementia Friendly makeover, complete with coin reminders

The check-out after its Dementia Friendly makeover, complete with coin reminders

And this week, Tommy, along with others who are living with dementia, officially launched it after Andy had delivered a #dementiaDO training session for 40 staff and members of the public in Costa Coffee.  “It was the first time I’ve been in competition with a Cappuccino machine,” jokes Andy.

Tommy says the dementia-friendly check-out means he now feels “safe and comfortable enough” to go shopping on his own.

The till, which has pride of place, with a large Dementia Friendly sign suspended above it and visual aids to help those with dementia identify the correct coins, will always be operated by someone who has attended one of Andy’s #dementiaDO sessions and become a Dementia Friend.

Andrew Schofield, the store manager told me, “We thought the launch was so successful we are now planning for Andy to train about 30 superstore managers in the north-west and it would be lovely if we could introduce Dementia Friendly tills in every store in the region”.

I think we can safely ring that one up as a result.




Tony O’Flaherty is an old friend of mine.  I’ve always known he was mad, bad and (quite literally) dangerous to know.  But recently he did something which, though mad and dangerous was anything but bad.

Sir Ranulph Fiennes, the oldest Briton to complete the Marathon des Sables, with Tony O'Flaherty who ran for the  Alzheimer's Society

Sir Ranulph Fiennes, the oldest Briton to complete the Marathon des Sables, with Tony O’Flaherty who ran for the Alzheimer’s Society

Last month this Dulwich father of three competed in the Marathon des Sables, rightly billed as the “toughest footrace on earth”.  Held annually in the Sahara in southern Morocco this international event requires its competitors (this year there were a record-breaking 1,360) to complete the equivalent of six marathons in six days in temperatures of up to 53 degrees centigrade.

When he’s not running, cycling, scuba diving, sky-diving (he’s done 227 jumps in total), climbing (he’s scaled countless mountains from the Eiger and the Matterhorn to Kilimanjaro), Tony is owner and director of the Wandsworth, Lambeth and Dulwich offices of home care provider, Home Instead.

His company specialises in dementia care and, since training as a Dementia Champion last year, Tony has given talks to 1,250 people, from GPs and nurses to children.  If he talks as fast as he lives, they must have been pretty interesting.

But the reason why Tony co-stars with Tommy in this week’s blog is that his fearless – some (his wife Jane included) might say feckless – exploits in the Sahara have so far raised a whopping £7,500 for the Alzheimer’s Society.

Tony’s achievement is all the more remarkable because 23 years ago, after falling 60ft while climbing in Alicante, he was told that he would never walk normally again. He had broken his back, thigh, wrist, arm and foot, fractured his skull, punctured a lung and paralysed his right leg.  “It was the surgeon’s comment about not walking again that prompted me to prove him wrong,” says Tony.

Tony and Sir Ranulph Fiennes during the Marathon des Sables

Tony and Sir Ranulph Fiennes during the Marathon des Sables

I think it’s safe to say he has.   The 53-year-old tells me that both his trainers lost their heel section within the first 24 hours and on the third (and worst) day his gaiters ripped, enabling sand to pour into his shoes.

“Distances are deceptive in the desert – you feel you’ve done three miles only to find you’ve covered one, which is soul destroying,” he says.  “Climbing the sand dunes is absolutely brutal – it’s one step forward, two steps back, and takes massive amounts of energy to conquer them”.

Despite – or perhaps because of – the physical and mental demands he underwent Tony describes his ordeal as a fantastic, unmatchable experience.  But the biggest reward was something for which he wasn’t prepared.

“The biggest takeaway was the unexpected love, warmth and bond that I developed with my tent mates.  Although I’ve done many extreme things under exceptional circumstances, I’d never again be able to replicate this incredible feeling of camaraderie”.

It struck me talking to the two Ts – Tommy and Tony – (and Tysoe makes three) that we really are all in this together.  There could hardly be two more different (ad)ventures than supermarket shopping and the Marathon des Sables.  But they share a common purpose which, in Dementia Awareness Week, couldn’t be more fitting or timely.

Andy Tysoe aka @dementiaboy shows his true colours

Andy Tysoe aka @dementiaboy shows his true colours





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Dementia Friendly. What does it really mean?

Dementia Friendly logoDementia Friendly.  A phrase so frequently bandied about it’s in danger of losing its value.  Over one million of us in the UK (including me) have attended a session on how to be a dementia friend and earned the right to wear a badge declaring that we are one.

Fair enough – it all goes towards raising awareness of a condition that now affects 850,000 of us in this country (not to mention the thousands more family carers involved), but I want to look behind the words to see how dementia friendly translates into everyday life.  Having come across a set of people in Yorkshire who, to me, embody what it means, I’d like to share their stories.

Fiona Andrews is community liaison officer with the British Transport Police in York. Three years ago, tasked with finding out what she could do to improve dementia awareness at the railway station, she decided to become part of the Joseph Rowntree Foundation’s “Dementia Without Walls” project, designed to create a dementia-friendly York.

For the first few meetings Fiona sat in her uniform wondering why on earth she was there.  “It seemed to be health and care-related, nothing to do with the police.  I didn’t see how I could fit in”.

Then she had what she describes as a light bulb moment.  “A couple living with dementia came and spoke about what life was like for them – they were no longer going to the shops because the husband kept wandering off or being aggressive, as a result his wife had lost confidence and become socially isolated.  Suddenly, I got it.

“I saw that they weren’t asking us what we could do for them but how we could work together.  I saw that it wasn’t about how to solve you – the people with dementia – as a problem, but about us having to change ourselves”.

Fiona’s words are bang on the money.  Those with dementia aren’t the problem, we are: we’re simply not dementia friendly enough, though things are improving, starting with people like Fiona, who told me that she “wants to use her uniform to promote positive change for those with dementia”.

L-R: Penny Gregg from the Alzheimer's Society, the late Jenny Neal & Pc Fiona Andrews

L-R: Penny Gregg from the Alzheimer’s Society, the late Jenny Neal & Pc Fiona Andrews

She’s already succeeded: in conjunction with the local Alzheimer’s Society, she’s made it easier for people with dementia and their carers to take the train.

She invited a group of those with the condition and their carers to walk round the station to see what signs, lighting, floor markings, glass roofs or toilets needed adapting and persuaded Virgin East Coast train company to make the changes.  She arranged supported day trips paid for by the company (for whom she’s now a Dementia Champion).  She formed a partnership with Yorkshire and Humber Dementia Action Alliance and joined the North East DAA, who are now conducting similar supported train journeys.

Tony Neal took his late wife Jenny out for the first time in her wheelchair on one of these trips and said that without them he could never have undertaken a train journey with her.  “For us it was a very easy win,” says Fiona. “But it was life-changing for Tony”.

This is what being dementia friendly is about.  It’s not rocket science, or expensive or gimmicky; it’s about thoughtful (often small, inexpensive) interventions.

Unlike Pc Andrews, 67-year-old Peter Smith from Rothwell doesn’t have a uniform, but following his mum’s death in 2004 (she had vascular dementia), he’s worked to make his area dementia friendly in what he calls his Frank Sinatra – “I do it my way” – way.

Peter Smith & the Rapide Brother clowns celebrate the Tea Cosy Cafe's 3rd birthday

Peter Smith & the Rapide Brother clowns celebrate the Tea Cosy Cafe’s 3rd birthday

Discovering that there were no local memory cafes Peter decided to set one up in a church hall.  The result, on the first Saturday morning of each month (a slot he was warned would never work) is the Tea Cosy café which draws 140 people monthly and requires an “army of volunteers”.   For £3 those with dementia and their carers, as well as a few people with learning difficulties and mental health issues (no one’s excluded) enjoy a cooked breakfast, quizzes, entertainment and chat.

This jaunty, upbeat film set (in a stroke of genius) to Dean Martin singing “How do you like your eggs in the morning?” shows the fun and warmth that – when fuelled by the passion of an individual such as Peter – something as cheap and cheerful as breakfast and a bit of human contact can provide.

When Leeds City Council set about becoming dementia friendly two years ago, Peter helped by bringing together people with relevant experience.  The best response came from West Yorkshire police, for whom Peter and the local Alzheimer Society ran several sessions.

The number of police officers attending grew from 30 to 80, then to other parts of the force, then to transport systems and other organisations such as the community pharmacy association’s 200 pharmacists.  Today, West Yorkshire police are believed to be the only UK force with dementia friendly stickers on their vehicles.

What Peter describes is an evolutionary process.  Being dementia friendly isn’t a top-down or one-size-fits-all sort of thing – and I’ve come to the conclusion that, because of its person-centred nature, it inevitably involves small groups.  It only grows through these groups sharing ideas and best practice, and networking, just as Pc Andrews and Peter did.

Peter has also been instrumental in setting up several dementia-friendly pub sessions around Rothwell which you can read about here.  And although he didn’t tell me about it, he played a part in another inspired initiative.   This Christmas the West Yorkshire Playhouse staged a dementia-friendly performance of White Christmas, for which they called on Peter and the Tea Cosy café for help.

As a result, the voices of those with dementia were heard: they were invited to rehearsals and gave their feedback to the director.  Singing sessions were imagesX4M6PF7Xheld with the audience before they’d even set foot in the theatre so that they could familiarise themselves with the tunes; strobe lights were cut; sudden, loud sound cues were made less startling, the auditorium lights were less subdued; a quiet room was provided (but, brilliantly, never used because everyone was having such fun).

As Louisa Clayton, a young Playhouse attendant, said “Something like dementia shouldn’t stop you being able to enjoy a show”.   She is so right.  A little consideration, a few nips and tucks – and bingo: we’re all included.  It’s called being dementia friendly.

When Chris McDermott lost his wife Doreen (who had dementia towards the end of her life) he fell into “a bad place”.  Then, in 2012, with the help of some counselling, the 82-year-old pulled himself round and, determined to help others who were experiencing what he’d been through, he became involved with his local dementia friendly group in Idle, near Bradford.

About 25 people with dementia and their carers attend the fortnightly meetings, where Chris chats to the carers, offering the advice and comfort of an “expert by experience” and joining them on their strolls through Buck Wood.  The once deeply depressed octogenarian says the gatherings have given him a purpose.

Recently a carer told him that the group was the best he’d ever been to – as Chris tells me this I can hear the pride in his voice.  He’s right to feel proud: he’s making a difference to somebody’s life.  How many of us can say that?

The more I see of projects that have at their heart the quality of life of people with dementia and their carers, the more I realise that they are (almost by definition when you think about it) small-scale, grass roots initiatives geared to individuals.  Being dementia friendly can never be an add-on; it’s part of everyday life, a mind-set that views supporting those with the condition as something as instinctive as breathing.

Badges and more generalised, broad-brush sessions such as the one I attended undoubtedly have their place.  But being dementia friendly is a way of thinking, of seeing other people and wanting to help rather then turning away.   On a personal level (which, let’s face it, is where we all operate), it’s about small acts of thoughtful kindness based on a growing knowledge of what dementia is.

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This Is Your Life

proper georgeThough I never met him I feel that I knew George Arthur Moss who was, to use his own words, “a fairly quiet man with a good sense of humour”.  Others describe him as caring and gentle.

George died in 2008 aged 86, having been diagnosed with dementia four years earlier.  Now that I’ve come to know this Oldham man a little I’d say that he was warm and creative, fond of the outdoors, walking and gardening.  A technical illustrator, he was also a talented artist and he loved to dance.  The most important people in his life, so his words tell me, were his family.

I wish I’d met George in person.  As it is, I know him through his Life Story Book, and while he was alive, this was how his carers came to know him.  Take a look and you’ll see how the collection of George’s words, pictures and photos of significant moments in his life reveal the man he was.

For the year he lived in a care home his Life Story Book (created months earlier) proved invaluable, both for those looking after him and for George himself, as his daughter Jean Tottie, now Chair of the Life Story Network, a community interest company dedicated to promoting excellent, individualised care through life story work, explains.

“We looked for a care home for dad close to where we lived in Yorkshire.  I gave dad’s Life Story Book to the manager before he moved in and the day dad arrived the manager didn’t talk to us, but to him, which was just as it should be; it turned out the two of them shared a love of rugby.

“My dad was so proud of his book.  He showed it to other residents and every member of staff read it with him and found something of common interest to talk to him about – dad’s care plan centred around the book”.

Jean, a retired occupational therapist whose career spans 35 years in health and social care, readily admits that even with her professional knowledge she found it hard to navigate her way through the system when her father developed dementia.  It was Polly Kaiser (a clinical psychologist, doctoral supervisor and member of the Oldham Life Story Group) who suggested to Jean that one of her students could create George’s life story while he was still living at home.

Jean jumped at the chance because, though unsure precisely what life story work entailed, she recognised its potential value.  So it was that Chris, one of Polly’s post-graduate students, made weekly visits to George for three months, talking to him and gleaning information to include in the all-important book.

Life Story NetworkThe Life Story Network, which collaborates with a diverse range of organisations to enhance the quality of care of individuals such as George, was born in Oldham (to which all roads seem to lead in this particular story).  It was the late 1990s and a man called Ken Holt was caring for his wife Alice, who had dementia.  When Alice moved into a residential home Ken thought he’d write a little story about her so that her carers would know exactly who she was.

He wrote that if Alice resisted putting on her nightie at night this might be because she thought she was going into an air raid shelter.  “You need to know these things about my wife”, Ken told the home.  How right he was.

Ken understood the benefits of life story work because he’d seen how it helped children in care.  And he and Polly Kaiser set up a local steering group to spread the practice – which was where Jean first encountered Polly.

Having experienced life as a carer from both sides of the fence – as a professional helping others and as a family carer herself – Jean has always been keen to “give something back”.   She was lucky to receive the support of an Admiral Nurse (a specialist nurse focussing on the family carers of those with dementia) and after her father died she became Chair of Uniting Carers, a network of family carers that until recently existed under the umbrella of Dementia UK, the charity that provides Admiral Nurses.

With the same altruistic motive, and though her emotions must still have been raw, six weeks after George died Jean agreed to give a talk on the value of life stories at a symposium in York.  Ken Holt was due to speak but because he was unwell Polly conducted a video interview with him in which she asked about the future; Ken replied that they should set up a national network.  The Life Story Network, set up as a community interest company in 2012, is Ken’s legacy.  He died two years ago.

One of those in the audience at the symposium was Ruth Eley, then head of the national programme for older people and dementia at the Department of Health.  She immediately saw the relevance of life story work to the Government’s dementia policy and helped Jean to corral other like-minded professionals such as Anna Gaughan, who was then leading the Department of Health’s Dignity in Care campaign in the north-west.

Yet another steering group was formed and in February 2010 the idea for a national life story network was launched at a conference in Leeds.  On the back of this successful event the group set up their website and (having secured a £200,000 grant to train staff and carers in life story work as part of the Government’s Dementia Strategy) formed the community interest company that exists today – with Anna as chief executive, Polly as a director and Ruth as Jean’s vice-chair.

So, fittingly, the Life Story Network’s own history is all about networks and the coming together of like-minded people.  And its story isn’t over yet (I doubt – and hope – that it ever will be).  It has just announced that to take the place of Uniting Carers (and building on the work of the Carers Call To Action which ended in March) it is setting up a new network for family carers of people with dementia, for which it has secured start-up funding from the Department of Health.

Discovering George Arthur Moss through his Life Story Book reminded me that we are all so much more than the aspect we present to a stranger for the very first time.  When we’re independent and can communicate clearly, this doesn’t much matter, but if and when our health fails or for some reason we become dependent on others, it is vital for them to know who we are.  Of course it is.  Put like that, it sounds so obvious, so simple, so human.

Jean told me that, having seen how Chris engaged with her father to entice his story from him, she now feels quite envious of carers embarking on life story work.  I understand what she means.  But at least George’s carers knew who he was.  Now, thanks to his daughter Jean and the Life Story Network, many more people will be known, treated and respected for the unique individuals they are.

this is your life book

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Margaret Miller – volunteer extraordinaire

Margaret Miller & Kimberley Walsh

Margaret Miller & Kimberley Walsh

Margaret Miller sets quite a challenge to ageism.   Just take a look at her photo – she’s the one on the left with the stylish hat, the other woman is somebody called Kimberley Walsh.

You might think that, at 104 – yes that’s right, one hundred and four, I too struggled to believe it – Margaret would want to put her feet up.  More fool you.  She is currently Scotland’s longest serving (and oldest) member of the Royal Voluntary Service (or RVS).

On the phone from her home in Springboig, Glasgow, Margaret tells me that she first joined what was then known as the Women’s Voluntary Service (WVS) in 1939, the year the Second World war broke out.

She went on to set up a stroke club for the “Forgotten People” – those who had been treated in hospital only to be discharged and sent home without sufficient support.  And although she’s now handed over the reins of Lightburn Harmony Club (where songs, games and chat are shared) to her daughter Jean – “I’m too old to have my name on the papers” – she still helps out there every week.

Margaret stands on its wizened head the stereotypical portrait of a little old lady sitting in the corner.  She says she’s got “a very good word” to bring to order the dozen or so members of the Monday afternoon stroke club in Amulree Street when they’re not paying enough attention. It’s “Oi!” – and even from 350 miles away it’s delivered safely, loudly and firmly, into my ear.

This extraordinary centenarian may not be typical of the 15.2m people in the UK who volunteer at least once a month.  But the sheer longevity of her volunteering career is testament to the benefits it brings.  “I’d recommend it to anyone,” she says. “I get far more out of it than I ever put into it.”

As she reels off stories of the people she’s helped it’s clear that she thrives on it.   There’s the man she used to take Christmas shopping for his wife’s present; he never spoke a word but managed to stutter out that he wanted to go again, so much did he enjoy it. And he could sing beautifully.  When Margaret tells me that this is common among those who’ve had strokes I immediately think of those with dementia, for whom this is also true.

Then there’s the woman she found crying in a newly furbished restaurant because, unable to lift her feet off the floor, she thought she’d suffered a second stroke.  It turned out that the static from her stockings was sticking her to the freshly laid nylon carpet.  “She was like a new woman when we got her home,” Margaret says, and down the line I can hear her smiling.

One of several RVS volunteers who feature on its website, Margaret doesn’t take a starring role; she’s not even listed first, nor is it mentioned that last March she was one of a rare handful to be awarded her second British Empire Medal, known as The Bar.

Among other volunteers is Clive, who has limited mobility due to his diabetes and lives in rural Wales. Clive not only receives meals on wheels from the RVS, he volunteers for them, updating their Ceredigion and Powys Facebook and Twitter pages.

I love the idea of Clive being helped and helping too.  It mirrors the concept of reciprocity found in Japan’s model of dementia care, where carers and cared for are partners, each benefiting from the other.

And scrolling through the RVS website I was delighted to come face to face with teenage schoolgirl Holly, a telephone befriender to 70-something Carole who lives alone and whom she phones every week for a half hour chat.  A film of the two of them not only reveals that both gain from their relationship, it shatters the illusion that all volunteers are middle-aged women with time on their hands.

As I was writing this blog, with serendipitous timing, the Commission on the Voluntary Sector and Ageing announced the conclusions of 18 months of research, consultation and events.  Sadly its findings are less than positive. “The Voluntary Sector Is Not Ready For Our Ageing Society” it begins, before announcing that it’s been struck by the sector’s “collective failure of imagination.”

Its title is blunt: Decision Time. The choice for voluntary organisations: “To be in the vanguard of shaping our ageing society and embracing its opportunities, or remain in a slumber – missing the huge potential of an ageing population”. Margaret Miller is, of course, an extreme but very effective example of that potential and to my mind the commission missed a trick in not using her as its cover girl.

Justin Davis Smith, executive director of the National Council for Voluntary Organisations (NCVO) describes the report as “an exercise in controlled fury”. His blog on the NCVO website offers up a skilful dissection of it and is well worth a read.

He picks out as one of the commission’s key themes the need to blur boundaries – between the voluntary and business sectors, between different ages and, most interestingly, between the different roles of customer, volunteer and employee, so that “rather than seeing services to older people as being done to, the sector needs to re-design services to recognise the fact that older people will occupy multiple roles, encompassing service giver and service receiver, often at the same time”.    Cue Clive, the RVS volunteer from Wales, a walking embodiment of the culture of reciprocity.

And what of Margaret Miller?  I wonder what she’d make of lengthy reports and online blogs into the role of volunteers in shaping our ageing population.

She told me that all she sought to do when helping her stroke people (as she calls them) was to give them back their confidence.  And how did you do that? I asked with all the innocence of my 55 years.  “By treating them normally,” came her instant and brilliant reply.

Sometimes life (particularly 104 years of it) teaches us things that no amount of clever research and erudite papers can ever do.  So why on earth don’t we listen more, make greater use of and appreciate all that older people have to offer – as volunteers yes, but also as valued and respected members of society?

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NHS Change Day, in the shoes of …

IMG_3030It’s NHS Change Day so I’ve decided to dedicate this week’s blog to someone who exemplifies everything it stands for.  She is, to use her own words, a disruptor and a radical who wants to bring about change.  She’s a boat-rocker, a distinguished member of the Twitter glitterati and a networker par excellence; if anyone’s in any doubt, she is of course Gill Phillips.

It came as no surprise to me that Gill, aka @WhoseShoes, is at the heart of a Change Day campaign to improve the experience of women giving birth (and their families).  In the last few weeks the #MatExp (maternity experience) hashtag has spread across Twitter like wildfire, disseminating nuggets of information and photos that capture the interactive, inclusive spirit of numerous sessions that have been taking place on the topic using Gill’s innovative Whose Shoes? approach.

This is a deceptively simple but very effective (I’ve seen it in action) board game that brings together different groups in an organisation – from senior management to hospital porters – enabling them to explore, through the concept of “walking in each other’s shoes”, the concerns, challenges and opportunities faced by all, from all perspectives.   It drills down into what “personalisation” and “outcomes-based” approaches to health and social care really are, and what they involve.

Gill shares my love of language but is frustrated by the wastefulness of meaningless talk.  She wants to do not endlessly bandy about phrases that aren’t properly understood – to make a difference, which is why she’s such a good fit with NHS Change Day.

She’s also an advocate of the School for Health and Care Radicals.  Based in Gill’s home city of Coventry and backed by the NHS, this online learning programme is designed to support and connect those who “want to change the world of health and care” – and could be seen as Change Day’s sparky little sister.

“I don’t need the school now in the same way,” Gill tells me.  “But I’ve been that person – the one who needs it, who wants to network, who’s not going to shut up – which is why it, and things like NHS Change Day, are so good”.

Gill Phillips collecting one of her two HSJ awards

Gill Phillips collecting one of her two HSJ awards

I’d agree she probably doesn’t need the school: prior to setting up Whose Shoes? she’d enjoyed a 30 year career in the public sector, and her name appears in not one but two of the Health Service Journal’s 2014 top 50 lists: the first for inspirational women, the second for innovators.

She certainly thinks outside the box, and there’s also a sense of urgency, almost anarchy, about Gill, which I’ve discovered stems from her brush with mortality.  Twelve years ago she was diagnosed with breast cancer.  As she says with customary frankness, “Life-threatening is the ultimate empowerment”.

In a guest blog on the Age Page website, she relates how, at the time, she told only very close friends and was proud that, despite undergoing nine months of surgery, chemotherapy and radiotherapy, nobody knew other than those she chose to tell.

Gill also describes an incident at that time which, for me, sums up exactly who she is.   It was a blustery day in early 2003 and she was standing on the touchline watching her youngest son play rugby.

“I remember I was talking to another mum, she writes. “She was a lovely woman, a friend but not a close friend – why on earth didn’t I tell her?  And I remember the cartoon sketch of holding onto my wig as I struggled to pull my hood up, with a camera round my neck (as always) and a howling gale coming up from nowhere!  You never know what’s going on in people’s lives and I am acutely aware of this”.

It’s all there.   The desire to support her son and, for his sake, not to look different while doing so, hence the wig; the pride preventing her from telling her friend (and her self-questioning, why?); the humour she sees in what must have been, for so many reasons, a very difficult experience; the ever-present camera to record whatever, whoever, whenever to enhance the story later; and finally, crucially, the life lesson she took from it all.

It strikes me that more than almost anyone else I know, Gill Phillips is what she does.  Just like her clever Whose Shoes? game, she makes connections. She’s genuinely interested in people – all people, the more and the more diverse, the better.   She’s a boundary pusher, but in her own life there are no walls – everything she sees and hears, everyone she meets is of genuine interest because they add to her knowledge and network, and from this bank of resources come the means for her work.

One secret of Whose Shoes? success (it’s been used in over 300 organisations from the NHS and care providers to local authorities and universities) is that it’s built on real-life scenarios.  The discussion cards that players collect describe incidents requiring action, with knock-on effects for the various members of staff involved.  What started out as a facilitation tool (in itself necessitating hours of research and scores of different scenarios) has now become a more complex co-production tool.

Gill worked closely with obstetrician Florence Wilcox over four months to research and collate information, then write the bespoke cards for the #MatExp workshops.  I attended one at Queen’s hospital, Romford.  It gave a whole new meaning to inclusivity, bringing together as it did the hospital’s chief executive, mothers, radiographers, midwives, consultants and babies, as well as a graphic facilitator who created a vibrant visual record of the event.

IMG_1222Before #MatExp, Gill ventured into my sphere of interest, joining forces with Ken Howard to oversee over 25 dementia-specific Whose Shoes? events (Ken lives with the condition).

In fact, this is how we met.  Not content with setting up the workshops in Kent, Gill created #dementiachallengers on Twitter to bring together like-minded people.  Social media novice as I was at the time, I didn’t even know what a hashtag was, but Gill noticed my fledgling tweets and blogs, scooped me up and introduced me to the gang.  (The rest, as they say, is history).

I can’t close without mentioning Gill’s Mum, who has just celebrated her 93rd birthday.  Ever her daughter’s mother, she is naturally on Twitter (@Gills_Mum).  And when, last year, she moved out of her home and into an assisted flat, the two of them kept the rest of us up to speed on developments via tweets and blogs.

One post in particular, written by Gill’s Mum and interspersed with comments and tweets from Gill and other Twitter friends, charts the moving day itself and encapsulates perfectly what the Whose Shoes? approach is all about.  Do read it.  It’s Gill’s Mum’s very own change day: at once a personal, poignant moment in two people’s lives yet also a treasure-trove – an online almanac – of evocative pictures, life-lessons and wisdom inviting you to comment and join in, as scores of us did.

We could all do a lot worse than to slip on Gill Phillip’s shoes for a moment or two, stop, look and listen to what others have to say, take a few steps back, mull over, digest and then do (or in my case, record).  Make a change, make a difference.  She certainly does.


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“Dementia’s where cancer was 40 years ago”. Is it?

word dementiaI’m old enough to remember where I was when John Lennon died – helped by the fact that his shocking, untimely death occurred on my birthday.  I was in my second year at Southampton university, vaguely getting to grips with how to cook for myself and occasionally dipping into the likes of Wordsworth and Yeats when I wasn’t down the uni bar.  It was another era.

It was 1980 – 35 years ago, the beginning of Margaret Thatcher’s lengthy rein, the Greenham Common CND rallies and the Austin Metro.  Back in those dim and distant days cancer was, to us as a nation, what dementia is now – or, as it’s usually put to me, “Dementia’s where cancer was 30 to 40 years ago”.  I’ve been told this so many times that I’ve decided to see if the statement’s true. Predictably, given that these are the untested investigations of an erstwhile student of the English Romantics, the answer’s rather wobbly.

There are similarities, particularly when it comes to the stigma surrounding dementia and lingering, though less so, over cancer.  Feeding into, and off, this stigma, are fear and silence.  Cancer is talked about more freely than it was 30 years ago, when I can remember grown-ups referring, in hushed tones, to the Big C (a phrase I never hear now).  Today, over 55s are more scared of dementia than cancer.

One reason for this fear is of course that there remains no cure for dementia, while some cancers are curable.   Despite this, society’s understanding of dementia is slowly being improved by the soft power of culture.

Just as, in 1965, with a few brave and well-chosen words, Richard Dimbleby (the “voice of the nation”) helped banish the stigma of the Big C by announcing on television that he had testicular cancer so, today, films such as Still Alice about a woman with Alzheimer’s, celebrities such as Prunella Scales and Terry Pratchett speaking out about their condition, and an increasing number of online, print, radio and television articles combine to achieve the same for dementia.

A friend of mine who lost her 77-year-old husband to dementia a few years ago offers another explanation for its persistent stigma.  “Because it affects the brain, dementia can make someone’s behaviour unpredictable or strange, and – in public places such as theatres or shops – this can be difficult to deal with, in a way that’s different from the challenges of cancer”.

Dr Katherine Sleeman, clinical lecturer in palliative medicine at the Cicely Saunders Institute, King’s College, London, describes the oft-repeated mantra comparing the two afflictions as a useful sound-bite.  “But for me as a scientist,” she adds, “I’d want to be sure, and it’s more complicated than the phrase makes it sound”.

It certainly is.  Let’s consider some facts.  In the 1970s a quarter of those with cancer survived; today more than half live for at least 10 years, while a quick scroll through the history of Cancer Research UK since 1980 reveals a compendium of breakthroughs, advances, new (sometimes life-saving) drugs, gene and hormone therapies, screening techniques and vaccines.

word cancerThe groundwork for the progress of cancer treatment in the past 30 years was laid down earlier in the 20th century.  Radium bromide was first used to treat mice in 1904; today 4 out of 10 cancer patients are treated with radiation, which cures more people than chemotherapy.  The first family trees showing hereditary bowel cancer were published in 1925, paving the way for the identification of genes linked with the disease in the 1980s.  The first warnings of the link between sun exposure and skin cancer, which came in 1935, still form the basis of today’s SunSmart campaign.

In marked contrast, the century or so since Dr Alois Alzheimer discovered the disease that bears his name (and is the most common of scores of different dementias) has seen few solid breakthroughs.  Only a handful of drugs (such as Aricept) sometimes, if taken at key stages, moderate the effects of certain dementias.

In recent days, a newly published report has revealed that between 1998 and 2010, 101 unsuccessful attempts were made to develop drugs for Alzheimer’s, with only three gaining approval for symptom treatment.   The report from the World Innovation Summit for Health (Wish) talks of “funding fatigue”, claiming that between 2009-2014, after “repeated and costly failures” to make a breakthrough, drug companies halved the number of research programmes into central nervous system disorders (including dementia).

Alzheimer’s Research UK has announced a £30m drug discovery alliance and launched three flagship institutes at the universities of Cambridge, Oxford and UCL (University College, London).   It’s interesting to note that in the 1960s – half a century ago – three flagship cancer institutes were created in London, Manchester and Glasgow.

It’s beginning to seem as if our knowledge of dementia might be more than 30 to 40 years behind that of cancer.  Alzheimer’s Society figures showing that in 2012-13, spending on cancer research (£502.8m) was seven times that spent on dementia (£73.8m) don’t do much to change that view, notwithstanding the Prime Minister’s recent pre-election announcement of £300m extra Government funding.

Put bluntly, to my unscientific eyes, it looks as though cancer statistics are moving in the right direction, dementia stats aren’t.

My layperson’s view is bolstered by the fact that mortality due to cancer started to fall in the early 1990s and is predicted to drop by around 17 per cent between 2011 and 2030 (thanks to earlier diagnosis and improved treatments), whereas the number of those with dementia is steadily increasing – 850,000 this year, predicted to rise to 1.14m in 2025 and 2m in 2050.  This amounts to a 156pc increase in 38 years, largely because we’re all living longer.

Phil McCarvill, head of policy and public affairs at Marie Curie, believes these two sets of diverging figures could have an impact on the hospice service in this country.  “We know that the majority of people who currently use hospices have cancer, yet as cancer survival rates increase the number of people with dementia is growing year on year; this means that hospices will have to accelerate the work they’ve been doing over recent years to ensure that they’re able to meet the needs of people with conditions other than cancer, specifically the increasing number of people with dementia”.

Dr Sleeman says that the comparative figures belie a situation made more complex by care settings.  “As their condition progresses, people with dementia tend to move into care homes, where staff can cope with their needs”.  In addition, she adds, doctors are usually able to predict when cancer patients are entering their final weeks, whereas this is harder in people with dementia.

However Dr Teresa Tate, whose distinguished career in palliative care has lasted over 20 years, is clear that hospices are designed to support those at the end of their lives regardless of their diagnosis.  “People, including those with dementia, should have access to hospices at times of specific need and then withdraw from their services, sound in the knowledge that they can return should they need to”.

Her view is shared by the National Council for Palliative Care, which has recommended a review of admissions policies, internal monitoring and staff education programmes to ensure that those with dementia have full access to hospice care.

Normally, whether I write about dementia therapies, hen power or grief (not a naturally cheery subject), I tend to type my last sentence feeling, if not uplifted, then satisfied that I’ve joined a few dots or at the very least laid to rest some ghosts so that I or others may be able to move on.

This post, on the other hand, has left me unusually flat.  It’s not just its lists of figures and facts, with which I’m never keen to boggle readers, but the laggardly progress they reveal in various aspects of dementia research, treatment and care.

If dementia is anywhere near where cancer was 30 to 40 years ago, it’s in the realm of stigma reduction.   The more we talk about dementia, the more we demystify it, the less fearful and more confident everyone becomes.  This is in our gift.

As for the rest – the game-changing breakthroughs, the life-saving drugs, the vaccines and screening programmes – we’re simply not there.  I’ve no idea (in those terms) how many decades behind cancer, dementia is; but the answer’s many more than 40 or 50 or 60.  Perhaps the phrase is misleading and I’ve been comparing apples with pears – it’s certainly, as Dr Sleeman said, a complicated issue.  The fact remains, whichever way I look at it, so far the story’s not great.

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House of Memories. My First Anniversary Blog

1. house of memoriesHouse of Memories is a very good idea put into practice”.  So reads the opening sentence of Liverpool National Museums’ description of a training programme designed to enhance the lives of those with dementia – and I couldn’t agree more.  As with all the best ideas, at its core lies simplicity, while its strength comes from its ability to develop in often unforeseen and beneficial ways.

Museums, of course, are repositories of past treasures.  Expertly curated, they record people’s lives – not just those of monarchs and wealthy art collectors, but of everyday folks like you and me.  So they are perfectly placed to aid those whose dementia has, amongst other its other cruelties, robbed them of their memories.

Three years ago, in January 2012, under the inspirational leadership of Carol Rogers, National Museums Liverpool launched its pioneering scheme targeted at the carers of people with dementia.  Some 1,200 people employed in health, housing and social care used the training programme in its first three months and it’s gone from strength to strength – “buddy” schemes now exist in museums and art galleries in Salford, Sunderland, Birmingham, Leicester and Nottingham.

The advantage of the House of Memories is that the resources and venues it requires already exist.  The same might be said of the care farms I featured in a recent post.  Full of the sensory delights – of sight, touch and smell – from which people with dementia gain so much pleasure, farms are ripe for their carefully and sensitively supervised use.

In the same way, as the House of Memories notes, libraries, arts centres and theatres can provide the health and social care sector with the skills and knowledge to facilitate access to untapped cultural resources, often within their locality”.  It’s a matter, as the website also states, of joining the dots.

The House of Memories’ training – which is free – centres on objects, archives and stories at the Museum of Liverpool.  Actors convey the complexities of the various different, often confusing and frightening, situations facing people with dementia and show how their carers (family or formal) can support them using certain skills and resources.

The resources, or tools, may be everyday things from the past – songs, clothes, retail or utility bills from their era – that then trigger memories, providing a topic for conversation.  In short, those with dementia and those who support them connect.  They engage.

This human connection is, of course, what all good dementia care is very much about.  The means by which the connection is made are, in truth, peripheral.  I’m immediately reminded of Rachel Mortimer’s Brighton-based Engage and Create, which does what it says on the tin, reaching those with dementia through art; and of Sarah Reed’s “Many Happy Returns” reminiscence cards that spark life-affirming conversations.

The list, in fact, goes on and on.  This is good, but also frustrating, because so often those I speak to outside what I term the “dementia community” (of which Rachel and Sarah are fully paid-up members) often have no idea that such inspirational enterprises exist.   Not only does this mean that countless people so in need of support remain in the dark, but that passionate, innovative individuals operating in different pockets of the country are in danger of expending time, energy, funds and intellect on reinventing a wheel that’s already turning.

And this, I hope, is where I come in.  It’s a year now since I set up my blog, which seems to have gained a life of its own and led me into a world inhabited by people whose lives (touched as they are, in one form or another, by dementia) fascinate, inspire and humble me.

In these past 12 months, as I’ve considered the condition that for so many years (including those when my mum was diagnosed with it) hardly dared to speak its name, I’ve come to recognise some common themes.  By happy chance (or possibly not by chance at all), the House of Memories training programme provides ample opportunity to highlight them all.

In this Liverpool scheme – as with all the best dementia care – the interchange, or engagement, between those with the condition and those supporting them, is reciprocal.  Monica Ellis, a care assistant who attended the programme, says that while the course enabled her to support people with dementia, it also helped her “not to feel so inadequate”. She talks of becoming emotional as she began to understand a little of how the world seemed to those with dementia, and how she could help them.

8462732211_c916db8742_oThis brought to mind a post I wrote back in the balmy summer days.  Its subject was Japan’s three eras of dementia care: first cure, then care and now reciprocity, where individuals are known not as “carers” or “cared for” but treasured partners.  I remembered too the words of Sally Knocker when she told a conference that in the course of its reminiscence work her organisation, Dementia Care Matters, asked staff to bring in objects of importance to their lives “because we want them as individuals, not staff.  Through reminiscence, connections are made and friendships formed”.

Along with this sense of reciprocity, the second theme to which I’ve found myself returning on an almost daily basis is that of simplicity.  By this I mean that the most meaningful and productive ways to enhance the lives of those with dementia are rarely complicated or sophisticated – or even always expensive.

The House of Memories matches the professional curation of lives with a condition that, among other things, strips people of their memories.  How sweet, how simple and neat is that?

Or let’s take Ken Howard’s proposal for what one might term “peer mentors”.  Immediately at the point of diagnosis, says Ken, who has dementia – at the GP’s practice or memory clinic, wherever the initial diagnosis is made – the individual involved should be introduced to someone who’s been living well with the condition for several months.  The two of them should be given the chance to sit down and have a chat over a cup of tea.  Ken’s idea is a triumph of straightforward, common-sense kindness.

And finally, of course – almost too obvious to mention – there’s the person-centred theme.  Seeing the person with dementia as a person.  I say “almost too obvious”, but we all know that sometimes – with unimaginable consequences – the obvious is forgotten or pushed aside in the stress of a moment, through lack of proper training, under pressure of time.

Excellent care, as far as I can see, always has an element of “we’re all in this together” – you happen to have dementia (I don’t, though I could have) and I’m going to do the best I can to make your life better.  This means knowing you for who you are (and who you were before dementia made your life different and communication difficult).

To this end, the various methods – music, museums with their professionally curated artefacts, drama and even apps – are put to good use.  But they are simply tools.  A means to an end, and that end is connection.  Between people.

So whichever way you cut it, we’re back to us.  Living, breathing humankind.  Some of us have dementia, some don’t.  How we deal with this irrefutable fact reflects on us all.  Sometimes, in my darker moments, I think that may be why, historically as a society, we’ve been frightened to discuss dementia – too scared perhaps of the ugly truths we might discover about ourselves.

But then I pick up the phone to talk to a specialist dementia nurse, or a family carer such as Jan Inman I featured last week, or I trot along to meet someone who’s thrown in a well-paid job to start up a social enterprise aimed at improving the wellbeing of those touched by this pernicious condition.  And I remember what it is to be human, what it is to know humanity, and I open my laptop and start to write in the hope that, just like the House of Memories, I too can join a few dots.

House of Memories

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A Love Story

Ron & Jan Inman at their wedding blessing in 2012, where they renewed their marriage vows.  Ron had been diagnosed with Parkinson's dementia

Ron & Jan Inman at their wedding blessing in 2012, where they renewed their 43-year-old marriage vows. Ron had been diagnosed with Parkinson’s dementia.

It was New Year’s eve at the Ilford Palais.  As midnight struck, a young man asked a girl to kiss him, once for 1966, and then again (cheekily) for 1967.  And that, as 64-year-old Jan Inman tells me, was how it all began.

The story of Jan and her husband Ron runs to 48 years; it’s one of mixed fortunes and hard work, of ill health and injury, of four homes, two children, a marriage and a blessing.  But most of all, by far – by a long and winding Essex mile – it’s the story of an enduring love that weathered everything life threw at it, including, in its final years, dementia.

Talking to Jan, as I did in the difficult, limbo days before Ron’s funeral, is like talking to the 16-year-old she was when she first met him in the dance hall. She’s full of enthusiasm, brimming with details – prior to that double kiss they danced to the Walker Brothers’ “The Sun Ain’t Gonna Shine Anymore” (how poignant that title seems right now) – and so unutterably proud of Ron, who died on 30 December aged 66.

“It was true love, and I realise how very, very lucky we are – “ She pauses a moment before correcting the tense.  “I still can’t get used to the fact that he’s gone”.

Jan describes caring for Ron when he succumbed to Lewy Body dementia as a privilege and says that while nursing him in the last three months of his life she fell in love with him all over again.

Few of us possess Jan’s gift for caring.  Shortly before the two of them married in 1969 she took a job as an orderly at Dagenham hospital.  She lasted one day before deciding that she wanted to look after everybody and instead became an auxiliary nurse or care assistant.

“I absolutely loved it – it was the most rewarding thing I’ve ever done and it held me in good stead because all those years later I was so well placed to look after Ron.  I was always grateful for that”.

Yet even this big-hearted woman found dementia hard to cope with.  Her account of Ron’s illness is one of mistakes and well-meaning but misplaced advice that was only saved from the sort of ending neither of them wanted by the arrival of an Admiral Nurse, a specialist dementia nurse who, to quote Jan, “changed everything”.

Before Sam Taylor’s timely intervention, the common factor in this thread of the couple’s tale was a lack of detailed knowledge of Ron, of his primary carer Jan, and of their devotion to each other – a lack, in other words, of person-centred care.

The first inkling that things weren’t quite right appeared in 2010 when Ron, a usually confident man, became stressed driving.  Then came the nightmares and delusions, initially diagnosed by their GP as a nervous breakdown, but which Jan knew, “just wasn’t Ron”.  Months later, a neurological consultant confirmed that Ron, as Jan by then suspected, had a form of Parkinson’s disease.

At this stage dementia wasn’t mentioned, but after a year or so her husband’s worsening cognition began to worry Jan so in 2012 she took Ron to a memory clinic, where he was diagnosed with Parkinson’s dementia.  When, a few months later, he contracted a urinary tract infection, his GP prescribed antibiotics, which had what Jan describes as a devastating effect on Ron’s brain.

“He went mad.  He maintained a German accent for four hours, marching up and down the hall and he became incontinent.  It was awful.  Eventually I called an ambulance and he was taken to hospital”.  Following this traumatic episode Ron was finally diagnosed with Lewy Body dementia, a condition which Jan, alert to every little change in her husband’s condition, had already researched.

Jan was exhausted.  To make matters worse, a teenage injury to her spine had come back to haunt her and she was in almost constant pain.  Following two months of virtually no sleep she made a decision that she bitterly regrets.  She listened to those she assumed knew better than her and placed Ron in local residential respite care.

“I’m so cross with myself.  It was well-meaning advice but it nearly killed me. It certainly wasn’t respite.  I couldn’t sleep for worrying about him and in the end I brought him home”.

But being the prime carer for a person with dementia – however much you love him and want to be with him (or her) – is hard.  Without sufficient help, both emotional and practical, it’s impossible.  “My mood started to plummet,” says Jan.  “I’d lost my confidence and could see no light at the end of the tunnel – and I was angry, constantly asking myself, ‘Why him? Why us?’”

It was at this critical juncture, with Ron needing more help than his wife alone could provide, that Sam Taylor was introduced to them by the local dementia service.

With Sam’s help, Jan was able to formulate an action plan and work her way through the complexities of looking after her husband, including hiring agency carers, linking up with district nurses and, in the final months, turning to St Helena hospice in Colchester for the vital support that enabled Ron to die in his own home in Clacton with Jan’s arms around him and his family beside him.

In one sense, this is the end of a remarkable story – but then again, perhaps not.  For Jan is nothing if not a carer and sharer, and aware of how invaluable an Admiral Nurse proved for her and Ron, last year she set up an online petition calling on the Government to recruit and fund more of them.  The petition is still open.

Jan is also a Purple Angel ambassador, helping to raise awareness of, and reduce the stigma surrounding, dementia through various different community and fund-raising activities.

It’s a mark of the powerful, positive impact that Jan and her husband had on all those who met them that no fewer than nine of Ron’s carers (many of whom nicknamed the couple Mrs Mills and Boon) will be at his funeral.  Victoria Lyons of Dementia UK told me that she’d like to clone Jan, such was her undiminished spirit and dedication to supporting the charity even in her toughest moments – and there were more than a few.

I’ve commented before on how our attitude to those with dementia – how we view them, and the care and support we provide to them and their families – reflects on us as a society, shining a bright, unforgiving light on our humanity.

Talking to Jan in the rawness of her grief – her choice, not mine – I was struck by how dementia, ugly as it is, can take and take, yet also give.  It shows, if not the worst in us, the lack in us.  But it can also reveal the best in us; to me, Ron and Jan’s story does just that.

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Care, Farms & Dementia


I first heard about care farms at an Alzheimer Europe conference, where I discovered that they are used extensively in the Netherlands as an alternative to day care centres for those with dementia.

It’s a wonderful, heart-warming concept that brings people with dementia close to the smells, sights and sounds of the outdoors, to the breathing warmth of animals and the touch of the land.  It gives them a purpose, a built-in fitness programme and life outside a nursing home.  The presentation I saw contained an image of an old lady pushing a milk pail along in her stroller that still makes me smile when I think of it.

Until the conference I didn’t know what care farms were, and I decided to find out if they existed here in the UK and if so whether they are used by those with dementia.   It turns out we have no less than 230 of them, under the umbrella organisation, Care Farming UK.

But their focus in this country is primarily towards vulnerable children and adults; where those with dementia are mentioned it seems – as so often with the very best dementia care – that provision for them is small-scale and patchy.

The size of the offering doesn’t diminish its quality however, and I hope that increasing awareness of living well with dementia will encourage the growth and spread of care farms for those with the condition.  In the Netherlands the farms have proved so popular that in 2013 they began to offer residential places (to date, about 20) for those with dementia.

To discover the benefits of care farming in the UK one need look no further than the website of a project called Let Nature Feed Your Senses.  It contains an inspirational account of four visits made by a small group of people with dementia from Credenhill Court care home in Herefordshire to the mixed grain and arable farm of Patrick Wrixon – a farmer who intuitively seems to understand the needs of those with the condition, even though his is not a care farm as such.

close up trailerThe illustrated record of summer and autumn trips to Devereux Wootton farm is guaranteed to lift your spirits on the gloomiest of January days.  It’s the little things that get you – the lively doggy welcome to put the elderly visitors at their ease, the tractor trailer with its jaunty blue awning used to chauffeur them about the farm, the profusion of seasonal, scented flowers, stems of wheat and inventive yellow-painted lining paper runners adorning each activity table.  I don’t know about you, but scrolling down the first few entries, I wanted to be there.

The project – funded by the Big Lottery in partnership with LEAF (Linking Environment and Farming) and the Sensory Trust – is a perfect example of how, when well executed, a simple idea spawns a host of unforeseen delights.

The trailer ride became much more than a means to tour the farm: it turned into a mobile workout, with (as the website records) “the stimulation of the ride, the simple act of holding oneself steady and hanging on tight, becoming an empowering and positive part of the experience”.

whittlingThe elderly visitors were quick to spot the abundance of woodpiles, so Patrick asked a young man teaching forest-based activities to schoolchildren on the farm if he could adapt his classes for those with dementia.

Sam Goddard jumped at the chance.  Before long the Credenhill group were sitting in the shade of trees learning how to whittle hazel sticks and create whistles from elder twigs.  A normally near-silent old man began naming trees and plants; it turned out he’d once worked in forestry and the visit had unlocked in him a wealth of information that he was keen to share.

I could go on about the trips’ many and varied benefits for the group – and how their levels of confidence, ability and happiness rose with each successive visit and lingered after it – but you can read it all for yourself on the website.   The sting in the tail of this particular story is that the project was finite and came to an end just over a year ago.

Patrick, who explained to me that the higher level stewardship scheme in which his farm participates provides funds enabling him to host visits from different groups, said that he’d be happy to welcome people with dementia if care homes contacted him and helped with the planning.  The offer is there; let’s hope it’s taken up.

Another man who knows all about care farms and dementia is Lee Pearse.   This 41-year-old Sheffield filmmaker says that his mother’s diagnosis with fronto-temporal dementia seven years ago when she was just 59 almost tore his close-knit family apart and completely changed his life.

Talking to him it’s soon clear that he’s on a crusade to raise awareness of the condition, the effects of which he describes as “living in a daily horror movie”.  He’s the co-coordinator of the Sheffield dementia action alliance and has made two films (which you can watch here and here) charting the impact of his mum’s dementia on the family.

For the last ten years Lee has been involved with Heeley City Farm, created 33 years ago in the heart of Sheffield, and he’s recently become its dementia manager.  Like so many care farms, Heeley, which has 43 staff, is geared towards young people with learning and behavioural issues, but Lee, having seen how the environment and outdoor creative activities helped him and his brother to stimulate and maintain their mum’s wellbeing for several years after her diagnosis, wants to make it more accessible for people with dementia.

Last year, three groups of about 12 people with dementia and their carers visited from local care homes.  Their visits lasted about an hour and they toured the farm and held animals.  Now Lee wants to set up a dementia department focussed on the needs of those with the condition to maximise the farm’s benefits for them – and, importantly, their families – and use their experiences to aid research.  To this end he’s attempting to secure additional funding for the farm.

His plans could be helped by a report published last year outlining the current state of care farms in England and listing a number of recommendations aimed at improving their services, including developing an integrated strategy and ensuring that health and social care commissioners are aware of such farms and their offerings.   It reveals that the majority of care farms (76 per cent) are not running at full capacity, while 91 per cent could provide more sessions if they had additional staff, land, buildings and, most importantly, funds.

The report produced by Natural England (in collaboration with Care Farming UK and Essex and Leeds universities) reveals that relatively few care farms (less than a quarter of the total) have been visited by people with dementia.

This strikes me as a missed opportunity.  As Lee says of Heeley city farm, the infrastructure, animals, gardens and staff already exist to provide hands-on, therapeutic experiences for visitors.

Surely it’s time to ensure that those with dementia can benefit from the wealth of simple, sensory pleasures to be found in places such as Patrick Wrixon’s farm instead of, as happens time and again, being overlooked.


In a wonderful example of the power of social media, Sue Padfield of Fosse Farm in Somerset has just left a comment (see below) in which she eloquently describes hosting similar trips for care home residents, and how much she misses them.  It is an insightful, heart-warming addendum to my blog and, most importantly, Sue has given her email so that care homes can contact her about possible visits:

And now a Buckinghamshire farmer, Claire Morris (see comments below), has said that she would welcome further visits from care homes via her website: