Pippa Kelly …

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

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunes, Acast, Spotify, Google, Podtail 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.

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunes, Acast, Spotify, Google, Podtail 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 18^th 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. 

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: AppleiTunes, Acast, Spotify, Google, Podtail 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”.