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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

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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 sallie@themede.org 

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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.

 

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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.  The play runs until 18 March and you can purchase tickets here. 

 

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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.

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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: https://www.surveymonkey.com/r/6XJRG7N

 

 

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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 mariashriver.com (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.

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“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 dementiajustaintsexy.blogspot.co.uk.

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.

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“Alzheimer’s Daughter” is published by Gratitude Press and is available at Amazon for £8.54

Jean Lee blogs at http://jeanllee.blogspot.co.uk/

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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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Dementiaville

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.

 

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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.

 

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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

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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.

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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: suepadfield@aol.com

And now a Buckinghamshire farmer, Claire Morris (see comments below), has said that she would welcome further visits from care homes via her website: http://www.thecollegefarm.co.uk/groups/

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Hospices & their ethos of care

st catherine's logoI used to have an irrational fear of hospices.   The very sound of the word, with its soft susurrations, whispered to me of sorrow and foreboding.  On the rare occasions I allowed myself to imagine what a hospice might be like, I conjured up visions of corridors punctuated with shadowy doorways beyond which lay sights too sombre to think of, too remote from my colourful life even to contemplate.

I’m pretty sure that my reaction wasn’t (and isn’t) an uncommon one.  It was born, of course, of ignorance.

This week, my two siblings and I attended an intimate, candlelit event in our home town of Dorking.   It evoked, through its familiar church setting and seasonal carols, a sense of peace and continuity, tinged with a pine-scented sadness as we remembered our dad.

The tree of light service (there were 13 others throughout the area) was organised by St Catherine’s hospice in Crawley, which had provided our father with palliative care – in his own flat – during his last years.

Casting sideways glances at the congregation, muffled in scarves and winter coats on a bitter December night, I reflected on the profound human experience of losing a loved one that had drawn us together and the extraordinary institution which, in its many and varied ways, had offered us solace and support.  And I thought for the umpteenth time since I’d first encountered St Catherine’s of just how different it was from how I’d imagined.

For although, to my knowledge, dad never set foot inside it, I did.  I’ve written here about the competing emotions I experienced as my father slowly relinquished his hold on life, and how my counselling sessions at St Catherine’s saved my sanity (and quite possibly my marriage) as stress took its toll on me and those around me.

I can still remember how nervous I was on the fresh spring morning I first ventured into the hospice, how I fought my doubts and slowed my pace as I approached the front door, hesitating for a moment before pushing it open.

I entered a place of calmness and warmth, brightness and light.  Every Friday morning for the next few months, I drove from London to Crawley and spent an hour in the company of a woman I barely knew who, with a few well-chosen words and a fathomless capacity for listening, eased the pain of a seemingly endless period of grief that threatened to subsume me.

The support I received from St Catherine’s formed just a small part of the comprehensive, compassionate care and understanding that it provides, free of charge, for the thousands of people living in Crawley, Horsham, Mid-Sussex and East Surrey.

tree of lightUntil he died five years ago, dad lived in his own flat and was visited by community nurses from St Catherine’s.  Until he came under its auspices I’d no idea that 90 per cent of its patients are cared for at home.  I’d no idea that it provides welfare advice, that it offers patients the chance to meet socially, to enjoy a range of alternative therapies such as aromatherapy and massage.  To be honest I’d no idea, until someone mentioned it when I was seeking help, that it had a team of counsellors.  Hospices are far more than mere buildings; they house an ethos of care.

Behind the philosophy sits a highly personal holistic approach which places the physical, emotional and spiritual welfare of patients and their families at its heart.  How good that sounds to those of us who’ve struggled too often with process-driven systems of care for older people, particularly those with dementia.

Over 50 per cent of St Catherine’s patients are discharged after a short stay; they might be admitted for assessments, for symptom control, or to give their family carers some respite.  Others are admitted to one of the 18 in-patient beds for the very best end of life care.

Now that I’m beginning to understand so much more about dementia, with which my mum lived for a decade, I find it sad that hospices –the first of which was established almost 50 years ago to care for those with incurable illnesses – rarely admit those with mum’s condition.

It seems I’m not alone.  Last year the Commission into the Future of Hospice Care published a report calling for the NHS to help with training hospice staff to care for people with other complex terminal illnesses, including dementia.  But this will cost money, at a time when we all know the NHS is cash-strapped.  In general hospices receive a third of their finance from government and raise the remainder through fundraising.

The National Council for Palliative Care (NCPC) says that a partnership between dementia care and palliative care is key to achieving flexible, responsive services that help deliver a good death for all those with dementia.

Having discovered that in 2010-2011 just nine people with dementia were seen at specialist palliative day care services, the NCPC recommended a review of admissions policies, internal monitoring and staff education programmes to ensure that those with dementia have full access to hospice care.

Such developments are part of a growing national debate about how we as a society care for, and pay for, increasing numbers of older people and those with dementia.  It is a complex, nuanced debate predicated on the simple truth that the vast majority of us grow old and when we do so we remain human, with human needs and emotions, and should be treated no differently from our younger counterparts.  For far too many, this doesn’t happen.

An exploration of how the hospice movement might be helped to offer more of its valuable support to those with dementia, is surely worthwhile.  It is possible; in some places – including St Catherine’s, whose staff run training and education programmes on dementia care – it’s already happening.

Willow Wood hospice in Ashton-under-Lyne has a dedicated dementia service led by Ann Regan, a nurse with many years’ experience of the mental and physical health needs that people with the condition present towards the end of their lives.

Dementia has been misunderstood for far too long; those living with it and their families have been side-lined, often stigmatised, by society.  I believe – but then I’m generally a glass-half-full girl – that attitudes are changing, albeit slowly, and that finally, hopefully, the condition is attracting the positive, constructive attention it deserves.

It would certainly be nice to think that hospices, with their ethos of care that so helped me and my dad, could one day provide more support for people like my mum.

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Hen Power

Wilf & Gracie, a Barred Plymouth Rock

Wilf & Gracie, a Barred Plymouth Rock

Sometimes in life, in a piece of writing or music or art, at a given moment or over a longer period, everything comes together – it all just works, often seemingly by chance.  And when it does, it’s magic, with the whole providing so much more than the sum of its parts.   This is what’s happened with HenPower, a project run by the charity Equal Arts whose tagline boasts that it “henergises older people’s lives”.

I’ll forgive the Gateshead-based team their never-ending stream of feathery puns – I’ll forgive them everything and henything in fact because what they’re doing is superb.  Through the simple activity of rearing and keeping hens, they’re transforming lives, including those touched with dementia.

It all started three years ago at a respite and assessment centre for people with dementia in Birtley called Shadon House.   Jos Forester-Melville, HenPower’s project lead, takes up the story.

“A man with dementia came into the centre when Equal Arts was working there.  He became unsettled as he was being assessed and kept repeating girls’ names.  No one knew who they were – his daughters perhaps?  It turned out that they were the names of his chickens”.

The manager of Shadon House asked Equal Arts’ director Douglas Hunter if some chickens could be introduced into the centre and, after checking with ‘elf and safety, the charity bought six of them, together with a second-hand henhouse – all, says Douglas, “for a couple of hundred quid”.

The charity trialled the project for six months in 2011 and it took off like a Mediterranean Leghorn (or, for those not into hens, like a rocket).  In the same year, it received £167,000 National Lottery funding, enabling it to set up eight pilots in care homes and assisted-living schemes throughout the north-east.  This year it has been awarded £1million in lottery funds, and organisations throughout the UK from Poole on the south coast to the Highlands of Scotland are taking up the idea.

88-year-old Ossie Cresswell with Peggy the Bluebell hen & some young henpals from Newburn Manor school

88-year-old Ossie Cresswell with Peggy the Bluebell hen & some young henpals from Newburn Manor school

With hindsight – and aided by Meerkat Films’ evocative Hen Men documentary and the HenPower’s regularly updated Facebook page – it’s easy to see why.

A group of older men, often not as good at socialising as their female counterparts, come together in the outdoor pursuit of rearing chickens for eggs, most of which they sell (the proceeds being used to fund the project) and some of which they allow to hatch.   They start designing imaginative coops and hen-related merchandise such as t-towels and Christmas cards.  In a stroke of genius it’s also decided that the group’s knowledge of the birds should be shared with youngsters, so the pensioners start to take their brood into schools, to great mutual effect.

They’re not big on emotion these men from up north.  But this – together with potent images of tough old hands cradling baby chicks that are no more than “cotton wool balls” to quote one of the hen men – only serves to strengthen an already powerful story that contains, as far as I can see, every last element of a global blockbuster.

Indeed, enquiries have been made from New Zealand, America and Germany as to how this simple but oh-so-effective scheme might be replicated there.

At the heart of HenPower lies a lesson for all of us involved in improving the lives of older people, and I can put it no better than Tommy Appleby, who became involved in one of the projects at Wood Green, near where he lives.

Tommy is canny enough to recognise that it’s not really (or just) about the hens.  “That’s like the trick up yer sleeve,” he says.  “They get us all talking and thinking, and the hens is just a starting point”.

His words echo those of Tim Lloyd-Yeates, founder of Alive!, a Bristol-based charity dedicated to improving the lives of older people in care through various activities.

“It’s the people in the room who have the knowledge,” Tim told me when I talked to him a few weeks ago.  “They hold the answer.  It’s easy to get caught up in the activities, but they are just tools, just a bridge to the person who has lost his or her energy or identity”.

As the wise words of hen man Tommy reveal – the great thing about these simple schemes is that they enhance the lives of everyone involved.  “We’re helping the old people”, he explains.  “Them that cannot get out and do things for themselves – they’re doing it through us.  It’s took years off me”.  Tommy, I’m sure he won’t mind me saying, is 88.

A year before he heard about the hen project Tommy’s wife, for whom he’d cared for 25 years, passed away.  “I was lost meself,” he says of that time.  “I didn’t know where to go or what to do with meself”.   He says the scheme saved his life.  “I know it sounds dramatic but it’s the truth”.

Whether it’s through engaging in Alive’s various pursuits or rearing hens, the them and us – the institutional labels of carer and service user (is there any phrase more likely to depress and dehumanise someone than service user?) – are blown away as the sense of shared purpose, verbal and non-verbal exchanges and straightforward human connection take over.

HenPower’s Facebook entry of 4 November gives a flavour of the magic at work.  Jos Forester-Melville, who writes the blog, has a way with words and her Geordie accent rings through her account of Barry and his mum Marie, a resident at Comfort House where the hen project is being introduced.  Do read it; by the end Marie who, to quote her son, “has dementia big time”, is having an animated conversation with Jos.

Carlene Taylor Williams tells of how, since HenPower was introduced in the dementia unit that she manages at Philips Court care home in Gateshead, levels of challenging behaviour among residents have been reduced (in some cases halved), which in turn has led to less use of antipsychotic drugs and improved staff morale.

Colin with Gracie, the Barred Plymouth Rock

Colin with Gracie, the Barred Plymouth Rock

HenPower oozes with the feel-good factor.  It’s rich enough to dip your sticky, soldier fingers in.  And, as Tommy so rightly said, it’s all to do with the people themselves.

Earlier this week I attended the launch of the ambitiously titled long-term care revolution in London.  Experts and innovators from health and social care, to academia, IT and finance, shared their visions for creating better services to support older people – from self-navigating tables to Miro, the robotic dog.

All were excellent in their own way – and necessary when research shows that by 2030, 2 million people aged over 65 won’t have relatives to care for them.

Yet, without wishing to get too dewy-eyed about this, I’m with revolutionary care activist, Shirley Ayres, when she says that the most powerful need we humans have is to be connected and to remain connected.  I’m sure all those involved in HenPower would agree.

There’s no doubt that technology has a big role to play in any future long-term care plans, but as Shirley (who’s been in the sector for 35 years) also said, it’s an enabler, not an end itself.

Ultimately care of each other – whether in the 12th or 21st century – comes down to people.  To Jos, Douglas and Tommy, to Marie and Barry, to Shirley – to us.  To you and me, folks, and what we choose to do and not do for the vulnerable in our society, and how we do it, and how we pay for it.

My vision of any brave new post-revolution world contains hens like Tommy’s goldtop Pam as well as dogs like Miro.  Above all, in place of service users, it has individuals connecting with and supporting each other.   How revolutionary is that?

alan

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Care home abuse & audio tapes. Zoe’s story.

Imagine being confronted with concrete evidence that your husband, who has dementia and lives in a nursing home, is being abused by those responsible for his care.  Think how you’d feel as you switched on the small tape recorder you’d hidden behind a chest of drawers in his room and heard people “hissing with venom” and treating him so roughly that he cried out.

Zoe Harris, founder of Care Charts UK

Zoe Harris, founder of Care Charts UK

It hardly bears thinking about; it’s every relative’s worst nightmare – the stuff of double page features in the Daily Mail and Panorama exposés.

At a recent conference debate I found out that this is what happened to Zoe Harris, the founder of Care Charts UK, a simple, effective enterprise that improves the lives of those in care, based in West Sussex.

The most remarkable aspect of Zoe’s chilling discovery – and this may seem hard to comprehend – was not the abuse she overheard, but what happened next and how it has shaped her opinions of formalised care, and how overt audio recording could be used as a positive means to better it, something we all want.

For some hours later that same night, as Zoe’s hidden Dictaphone continued to whir, another pair of carers entered her husband’s room.  This couple’s treatment of Geoff, by now traumatised and confused, was exemplary.  Listening to the recording, Zoe heard compassionate professionalism at its best as the two calmed Geoff’s fears.   Later still, a third couple entered; their care was adequate, but could have been better.

The following morning Zoe relayed her discovery to the home’s manager, who acted swiftly, suspending the abusive carers, launching an internal investigation and alerting Social Services.  After careful consideration, and with her husband’s wellbeing uppermost in her mind, Zoe continued her covert audio recording for another 12 months, until he died, being careful to protect carers’ anonymity by transcribing what she heard and deleting the recordings.

In 50 hours of recording she never heard anything as bad as the first night; the tapes revealed a mixture of good and bad practice, most of it was adequate, bordering on poor.

Her blogs on the subject, written some years later, contain a thoughtful analysis, not just of the minute-to-minute treatment her husband was receiving behind closed doors, but of how our system of care – with its inadequately trained, badly paid, demotivated, often poorly managed and exhausted workforce, for whom society seems to have a low regard – reflects on us all.

My goodness, that struck a chord with me.  I wrote a Thunderer column in the Times last year which ran under the headline “Whose really at fault over care for the elderly?  We are”.  It sounded shocking (even to me) but it was in fact a perfect summary of my piece, which suggested that instead of constantly criticising badly paid carers for failing our loved ones we should consider how we as a society treat them all.

Zoe – who had every reason in the world to rail against the failing care her husband Geoff had received, berate the home’s manager, contact the industry’s watchdog in the form of the Care Quality Commission (CQC), demand that the home be shut down – even, some might say, take her revelations to the press – did none of this.

Instead, she considered all that she’d discovered – the good, the bad and the mediocre – and the method by which she’d discovered it and let the knowledge gently simmer away in the back of her mind as she got on with developing her care charts, which today enhance the lives of 20,000 people in 800 care homes throughout the UK.  I once heard Zoe say that she’s more a doer than a talker; I’d go along with that.

But now the subject of surveillance in care homes is in the news.  This week the CQC has approved guidance on covert cameras for families worried about relatives in care homes.  It is, in effect, giving its backing to the use of hidden cameras to catch abuse.

Zoe believes that this action misses the point – that the use of such cameras “will not have the slightest impact on the overall quality of care”.  How so?  Surely if a hidden camera catches abuse – such as at Winterbourne View hospital – this is a good thing?

In Zoe’s opinion such recordings will feed sensationalist headlines and keep the debate focussed on a handful of bad cases, while neglecting the vast majority of good practice.  Again, I’m with her.

What is so refreshing about 53-year-old Zoe is that, having heard the worst (in the emotive form of cruel treatment being meted out to the now-vulnerable man she loved) she has chosen to focus on the positive.  How many of us would have had the strength of character to do that?

She’s decided to use her experience positively to make a difference in a system that she and I agree is only part of the much larger, complex issue of how we as a culture treat our elderly and vulnerable.

So, how does she envisage overt audio recordings should be used?  She concedes that any form of surveillance will probably be regarded with suspicion by staff but says if audio recording can be introduced as a training tool, discussed and operated openly it doesn’t have to be divisive.

“Recordings must be taken with the full knowledge of participants, and the results listened to with a view to using it as a way to learn and improve, not criticise.  Long-term, it can be used on an ongoing and random basis, as a cost-effective and efficient method of staff training.”

Zoe believes that, over time, carers not interested in doing a good job would be driven out.  “This is not an overnight fix.  I don’t believe that such a thing exists, but I have yet to hear of a better way of reassuring a sceptical public that care can be monitored even behind closed doors, whilst motivating carers to do a good job in the knowledge that good care will be recognised and rewarded”.

The term expert by experience is in danger of over use, but in this particular instance, Zoe is just that. I heed her words on this subject and gently suggest that others might do the same.

Andrea Sutcliffe, chief inspector of adult social services, has an unenviable job that must keep her extremely busy.  She attended the conference debate where Zoe made her powerful, personal revelation and on the very brief occasions I’ve met Andrea and from what I’ve seen of her in the press, she brings more than professional expertise to her post.

Her watchdog may have given the green light for families to use covert surveillance cameras but I hope that she’ll spare the time to listen carefully to what Zoe Harris has to say about the power of audio recordings as a positive tool for good.  I think she – indeed, each and every one of us – owes Zoe that, and more.

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Stigma. Speaking out against the S word

stigma

Since returning from the Alzheimer Europe conference in Glasgow I’ve been thinking a lot about stigma and why it clings to dementia. It simply didn’t exist at all for the three days I was there, replaced instead by a stimulating buzz of optimism and positive creativity.  So why does it persist in the wider world?  And just how big and bad are its effects?

A compendium of essays on the subject published last month brings together a range of insights and experiences from people with dementia, their families and carers, and from international professionals in the public, private and voluntary sectors.

Well worth a read, the report from the International Longevity Centre UK explores exactly what stigma is, why certain illnesses and conditions attract it and what we can do to eradicate it.

Within every contribution lurks the notion of fear – followed closely by silence due to the fear of speaking out.  Together, the two form a toxic combination, a vicious circle of entrapment: stigma breeds silence that in turn fuels fear that then feeds stigma.  And so we go on.

But how do we stop this negative, never-ending cycle?  For stop it we must.  As Julian C. Hughes, consultant in old age psychiatry, says in his essay, there is an ethical imperative to do so.  “Things must change”.   He argues that as interdependent citizens we have a responsibility to act.   But how do we accomplish this change?

In 2007, the LiveStrong Foundation in America produced a global report entitled “Cancer Stigma and Silence Around the World” – the title alone conveys its parallels with dementia, pairing as it does the two S-word partners in crime.

The study revealed, unsurprisingly, that the answers lay in raising awareness and education: in informing the uninformed.  Communication was, it concluded, vital.

Of course the major difference between cancer (likewise AIDS, the other stigma-ridden illness of the last few decades) and dementia is that certain cancers (and AIDS) are curable.  The 100 or so different forms of dementia remain incurable.

While acknowledging this, Dr Jack Watters of the pharmaceutical company Pfizer says that today’s attitudes to dementia still remind him of the early days of the AIDS crisis in the 1980s when the popular wisdom was that “it’s better not to know”.

“In those dark days we asked ourselves ‘Why would we want to hear this news especially when there’s nothing we can do?’ But there is always something we can do.

“With both conditions, one of the main reasons for not wanting to know the diagnosis is the fear of being marginalised, being ignored or misunderstood, and watching support disappear for no good reason.  In other words, stigma”.

Dr Watters believes that only by addressing such understandable if irrational behaviour head-on – by “bringing dementia out of the closet” – can we prevent it.

He describes attending a dementia session in 2012 where experts spoke knowledgably, but the most articulate contributor was a doctor with dementia.  She refused to see herself as a victim, instead viewing her early diagnosis as an opportunity to live each day to the fullest whilst taking charge of her own health.

The woman was Jennifer Bute.  I too have seen her speak and she is the very antithesis of a “dementia sufferer”, the term so disliked by many with the condition.

Someone once described Ken Howard, diagnosed with Alzheimer’s eight years ago, as “hope personified”.  I’d say that Helga Rohra, Agnes Houston, Chris Roberts, Nancy McAdam – all of whom I’ve met and all of whom have dementia – could equally well be described as such.

They, along with the 40 or so other people with dementia at the Glasgow conference, were what made it so positive and stimulating.  The “them and us”, the separation and marginalisation, the marking out as different – all defining factors of stigma – were missing.  In their place, inclusion in a community, a context, a conference, that understood them and wanted, above all, to hear what they had to say.

A month or so ago Radio 4’s Today programme ran a piece in which two partially sighted people gave their reaction to the White Cane Campaign, created to encourage the use of canes among partially sighted people who, it turns out, are reluctant to use them because of the stigma attached.  It had never occurred to me to associate stigma with white canes, but that’s because I don’t know anyone who uses one.

Rachael and Joe took contrasting approaches.  Rachael, having held out for as long as she could, has overcome her own psychological reservations and started to use a cane, which she says has  given her greater independence.  Joe is still holding out.

Listen to the piece and you’ll hear a discussion about what it is to have a condition of which other people are largely ignorant and don’t understand.  Both young people said they hadn’t minded “coming out” – their phrase – to their friends (when they were in what you might call a white-cane friendly environment, among those who understood them and their needs), but doing so publicly was difficult and, for Joe, a step too far.  So he’s struggling, in self-imposed silence about his condition, without one.

Again and again with dementia, cancer, AIDS and eye diseases – and doubtless countless other conditions – we hear that the stigma springs from ignorance.  Overcome ignorance with education and communication – cut into the silence and speak out – and we’ll overcome stigma.

To finish, I’m going to add a coda – a personal, possibly controversial plea.  The media has a powerful role in stigma-busting; it conveys to the public greater knowledge, personal stories and colourful individuals whose very presence spits in the face of misinformed prejudice.

I know that it sometimes makes mistakes. In the first piece I wrote about my mother, who lived with dementia for the last decade of her life, I’m ashamed to admit that I described her, in a national newspaper, as demented.  She was my mum; I didn’t do so to cause offence but out of ignorance.  I know better now.

The question of the media, its role, its power, its fallibility and its sometimes dubious agenda, I’ll tackle in another blog.  I just want to leave you with the thought that, for good or ill, we writers and broadcasters are the message-bearers – and we too are in a transition period as the subject of dementia looms larger in everyone’s lives.  We too are learning; we too are human.  Bear with us, or we’ll all lose out.

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Alzheimer Europe 2014

alzheimer europe brochureThe tone of the 2014 Alzheimer Europe conference was set from the moment I arrived and bumped straight into the force of nature that is Helga Rohra.

I’d read about this 60-year-old German – and listened to her powerful words – many times, but never met her in person.  She was bustling about, organising others, clearly in charge and after a swift exchange of words I let her go. She was far too busy to talk for too long.

Helga chaired three sessions at the Glasgow conference and participated in many more.   Such is her energy and panache that she seemed to be everywhere.  Her mark, her imprimatur – and that of the other 44 people with dementia attending the event – was well and truly stamped on it.

I’d expected those living with the condition to be at the heart of a conference entitled Dignity and Autonomy in Dementia where, on the opening night, an historic Glasgow Declaration to that effect was signed; I hadn’t realised quite how loud and clear their voices would be.  More fool me.

For Scotland is of course the home of the Scottish dementia working group.  Created in 2001, its members all have dementia and it was years ahead of the rest of the world in giving a voice to those with the condition.

An hour or so after I bumped into Helga, the Scottish Government’s acting director of health and social care integration, Geoff Huggins, would tell conference about the working group’s forcefulness and impact on government policy.  With hindsight, I should have realised that in Glasgow those with dementia could be nowhere else but centre stage.

The big guns – politicians, CEOs and the like – are generally rolled out to open these sort of things, and all too often in my experience their speeches are over-glossed with a veneer of sound-bites and unrealistic rhetoric.

Alex Neil, Scottish Government Health Secretary

Alex Neil, Scottish Government Health Secretary

Glasgow’s firepower came in the form of Scottish Health Secretary Alex Neil.  His late father had Alzheimer’s – and the politician’s speech was shaped, for the better, by his experience.

The Health Secretary spoke of the importance of involving people with dementia in policy-making decisions.  “A key part of any successful dementia strategy is to involve them, not just in the delivery, but in the implementation and formulation of the policy”.

His speech was from the heart, from someone who had seen his own father live through that distressing period of the condition when he knew that something was wrong, but didn’t know what.  It was the speech of a person who understood, as he said to cheers from the hall, that “the primary motivation in the drive towards understanding and curing dementia is humanitarian”.

This person-centred theme ran through the conference like words through a stick of Brighton rock.  It informed every presentation I saw, each contribution I heard.

From the zest and passion of Susanne Rishoj (scroll down the link to find her) who runs dementia dances in Denmark because “the body remembers what the mind forgets” to the green care farms of Holland and the Netherlands (again, scroll down). 

These farms mark a radical change in the concept of care, with the emphasis on smaller groups of seven or eight people with dementia living in a “household” with a nurse.  Here, tasks are shared as they would be in an archetypal home.  It’s a fascinating model about which I plan to write more in future.

Innovation, energy, optimism are all words that spring to mind when I think of the Glasgow conference.  But most of all I remember it for so naturally and obviously placing people with dementia right at its heart.

Nowhere was this more apparent than in the session where members of the European working group of people with dementia presented snapshots of their lives.  It was full to bursting,  the doors left open so that people standing in the corridor outside could hear what Scotland’s Agnes Houston, Jean-Pierre Frognet from Belgium and Nina Balackova from Czechoslovakia had to say about living with the condition.  Helga, crackling with energy, chaired it in her inimitable style.

Agnes, one of the guiding lights of the working group, spoke of her eight-year race with dementia.  “For a long time I was trying to outrun it,” she said.  She now describes her experience more positively.  “I have dementia. Dementia doesn’t have me”.

In another oversubscribed workshop 60-year-old Ken Howard, diagnosed with Alzheimer’s eight years ago, explored (with his colleague Gill Phillips) how others can support people with dementia.

Ken Howard & me at another (warmer) conference

Ken Howard & me at another (warmer) conference

Ken, a gentle giant of a man of whom I’ve written before, asks others to help by “passing the salt when it’s out of my reach” – that is by aiding him, and others like him, in common-sense ways which encourage independence and confidence, rather than taking over control, which doesn’t always help.

On the final day, over tea and yet more biscuits, I bumped into Jean Georges, executive director of Alzheimer Europe, and asked him what one message he would take away from the conference. That governments of the different European nations must work together for integrated solutions so that we don’t all keep re-inventing the wheel, was his answer.

It made sense to me.  Time and again as I talk to and write about people with a passion for raising awareness of dementia, reducing the stigma surrounding it and helping those with it to live their lives as well as they can – from Tim Lloyd-Yeates to Rachel Mortimer, Sarah Reed and Zoe Harris – I keep encountering the same principles and themes.  They are simple, person-centred and common-sense – and they occur in isolated pools of best practice.

In the closing sentences of a recent blog I spoke of my hope that these tiny pockets would spread to become the norm.  In a sense I was echoing, in micro or local terms, what Jean Georges said.

Conferences – the best conferences – are intense, stimulating, provocative experiences whose effects and influences reverberate long after the delegates have wended their way home. So it was with this one.

I’ve no doubt that it will spawn many more informative articles and blogs (not least from me).  Today I simply wanted to capture that post-conference glow, to linger in the moment a little, to reflect on a whirlwind couple of days.

And the one message that I (a far smaller fish than Jean Georges) take from Glasgow is that people with dementia have found their voice and are beginning to use it to great effect.  It’s up to the rest of us – be we writers, innovators, entrepreneurs, health and social care workers or policy makers – to listen and then, to act.

The inspirational Helga Rohra of Germany

The inspirational Helga Rohra of Germany

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The Story of Tall Tim

Tim at session black and whiteThis is the story of how a (very tall) man found his vocation.  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.

This year alone Bristol-based Alive! delivered 2,500 specialist dementia activity sessions – such as Making Pals and Parlours of Wonder – in 300 care homes across nine counties in the South of England.

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 explains.   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 tells 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’s gone 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 calls 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 says training others to continue the work is vital; otherwise, the beneficial effects of the sessions are 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, says 47-year-old 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 says.  “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 says, “Everyone is unique.  Let’s stop pretending otherwise.  How can you serve people if you don’t know who they are?”

An excellent question from a remarkable man whose story, I’m sure, is very far from over.

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Silver Sunday

Silver SundaySilver Sunday.  How easily it slides off the tongue.  It’s happening this weekend so it seemed a good subject to write about.   I’m sure many people will have mixed views about it; I thought I was one of them.  But having carried out a bit of research I’m far more positive.

Silver Sunday was launched just two years ago and in the words of one of its champions, the absolutely fabulous Joanna Lumley, it’s “All about celebrating older people, particularly lonely older people, who are overlooked by society”.  What’s not to like about that? Absolutely nothing darling, as Patsi might say before air-kissing my cheeks.

I was further drawn to the initiative when I discovered that it was led by the Sir Simon Milton Foundation.  I was lucky enough to meet Simon a couple of times before he died suddenly a few years ago aged just 49.   Modest, quiet, unassuming, he was Boris Johnson’s deputy, playing the straight man to the Mayor’s larger-than-life persona and ensuring that at least some of the blond one’s grand ideas were turned into reality.

The Foundation was set up after Simon’s death to pursue his vision of a caring city offering opportunity for all.  He knew what he wanted for London’s older people: “More personal choice and control, personal dignity and the chance to make a positive contribution”.

Hear, hear to that.  So why was I sceptical about Silver Sunday, originally launched in London and now a nationwide event?  My initial beef was why on earth we, a supposedly civilised country, should need a gimmick such as Silver Sunday to get us to recognise the value and worth of the more mature among us.

The cynic in me says that before too long greeting card manufacturers and retailers will have jumped on the band wagon and started to produce and sell Silver Sunday cards and pressies.  Generous as those business people undoubtedly are, they’re unlikely to be motivated by the kindness of their heart.

But – and it’s a big but, and I’ve said the same of dementia friends, another initiative with its fair share of sceptics – I believe that anything that gets us talking about, raising awareness of, increasing positivity about the subject, is good.

When New Labour and its revolutionary new media machine first came into being in the 1990s I was working in the Palace of Westminster and I remember being told the theory behind sound-bites – those annoying nuggets of language bereft of verbs that were constantly being repeated by Tony Blair et al and have now become common as .. well, muck ..  among politicians.   Remember “Tough on crime, tough on the causes of crime” and “Education, education, education”?  I bet you do.  Because, as the spin doctor explained to me, it’s only when you, the public, are getting sick to the back teeth of them, that we in politics know they’re working.

I think that seemingly tokenistic approaches such as Silver Sunday may work in the same way.  There’s no doubt something has to change in our society: in the same week as we celebrated International Older People’s Day (another contender for the cynics’ dubious day award) a report by HelpAge International revealed that the UK doesn’t even make it into the top ten countries in which it’s best to age.

Norway came first, with the highest level of well-being for those over 60.  We were ranked 11th, behind, among others, Sweden, Switzerland, Germany and the USA.   Worryingly, we came 23rd for education and employment (trailing the likes of Bolivia and Estonia) and 27th for health.  Unsurprisingly, given what I have discovered (and written) about their enlightened attitude to dementia, Japan came first for elderly health care.

Joanna Lumley highlighted this East-West divide in an interview on Classic FM to publicise Silver Sunday.   Asked whether we in Britain had something to learn from other countries, she was quite clear.

She contrasted once multi-generational family homes (where “furious teenagers boiling with teenagery things” used to help look after two-year-old siblings and 95-year-old grannies sitting in the corner) to today’s society in which the affluent West separates itself off into different homes in which people wearing individual sets of headphones watch separate screens.

She compared our contemporary approach to older people to that of the Far East where, she said, “The older you get the more you are respected and your opinions are sought.  That doesn’t happen in this country, where as soon as you reach a certain age you are thrown onto a kind of mental scrap heap”.

It’s worth, not just listening to the interview but watching it on Iplayer in order to see and hear just how far from the scrap heap 68-year-old Joanna Lumley is.  She may be a pensioner but she’s a million miles from past it.

And she articulates my point about the sound-bite penetrating the public consciousness far better than me.  Recognising that traditions can’t be built overnight, she said she hoped that Silver Sunday would eventually, like Mothering Sunday, become a fixture in the calendar.

Now that really would be something.  Although it only comes round once a year, Mother’s Day is a time to remember our mums and generally we do.  Even when they’re no longer with us.  I drove down to Surrey this spring to visit mum’s grave on Mothering Sunday.  These rituals are important, not just in themselves, but collectively; over time, they accrue and begin to mean more.

The nationwide activities taking place in two days’ time in the name of Silver Sunday are many and extremely varied.  From teas and tangoes to ballet at the Royal Academy of Dance, from quizzes and crosswords to walks and runs and obstacle courses.

In 2012 there were just 19 events in Westminster, last year over 150 took place across the country.   Silver Sunday is already spreading and growing – and like those irritating sound-bites it will be seeping into our sub-conscious.

The events themselves – whether cerebral or physical – are not the point; it’s the participation, the coming together of the generations as we used to do, that really counts.  Visits are made, words are exchanged, tea is drunk and perhaps, whisper it quietly, gifts are given and received (let’s hope they’re homemade).

If Silver Sunday is what it takes to kick start us towards the inter-generational mixing that used to happen of necessity, it has my blessing.

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Drawing From The Inside Out

The Dance by Henri Matisse is one of a pair of panels known as The Dance and Music, and is housed in the State Hermitage Museum in St Petersburg

The Dance by Henri Matisse is one of a pair of panels known as The Dance and Music, and is housed in the State Hermitage Museum in St Petersburg

Rachel Mortimer is an artist.  She is also a qualified Montessori teacher and, among other jobs she’s held, she’s worked as a carer.  At the moment she’s studying for an Open University psychology degree.  She’s clearly someone with many strings to her bow.

But the reason we’re meeting – and what could be seen as the natural culmination of the various facets of this 35-year-old woman – is the social enterprise she set up a couple of years ago.  Called Engage & Create, it’s dedicated to improving the quality of life for people with dementia and those who care for them.

Rachel describes how the enterprise came about on one of her own blogs.  “I was invited to teach some painting in a care home. As I walked through the door I was confronted by an unpleasant smell, silence in a room of thirty residents and the odd scream. This was a dementia specialist care home and nobody had told me”.

Others might have walked away.  Rachel sat down and, daunting as it doubtless was, attempted to talk to some of the residents, using art and paintings – the reason, after all, why she was there.   Little by little, with eye contact and touch as much as words, she began to engage with the elderly people.

The key, she later realised, lay in having something concrete to focus on and talk about, and thus the idea for Engage and Create, for which Rachel has since won an interest-free social enterprise loan and been awarded a business mentor, was born.

It began with Ignite sessions, in which armed with her Ipad, Rachel used images of paintings and sculptures to talk to and spark reactions with those whose dementia had robbed them of coherent speech.

Other than music perhaps, there scarcely seems a better medium for these sessions than art, which touches peoples’ emotions and feelings – the very parts of those with the condition that remain accessible.  In the words of Richard Taylor, a man far wiser on the subject of dementia than I can ever hope to be, Rachel draws “from the inside out”.

Rachel’s instinct, fostered by her Montessori training, is to focus on the positive and create what she calls “a failure-free environment”.  A key tenet of the teaching technique is to draw out a child’s unique strengths by concentrating on what he or she can do, not what he or she can’t.  Put another way of course, it’s child (or person) centred care.

Confronted with an elderly woman who had barely spoken for six weeks, Rachel showed her The Dance, a lively painting of interlinking figures by Henri Matisse, and asked her what she thought of it.

Rachel had been hoping for perhaps a flicker of reaction.  To her amazement the woman said quite clearly, “The mood and the colour move right through me”.

The emotion, the words, the connection were all there – drawn from the inside out, through the immediacy of art.  Do take a look at the State Heritage Museum’s website, where the description of the painting is uncannily similar.

Immediacy is the art form’s other great benefit for those with some degree of cognitive impairment.  We all see a painting or touch a sculpture right here, right now, this very moment; it doesn’t have to be remembered or read.  The fact that art exists to be seen and appreciated by each of us in our own different ways, each time we see or hear it, is as true for someone with dementia as someone without.

avatar_7a0f7b2b26f2_64Engage and Create does what it says on the tin – and more.  It’s a clever name with a hidden depth.  Because it strikes me that that Rachel’s techniques (which also include creative and reminiscence workshops to provoke discussion and engagement as a precursor to hands-on creative activities) allow people to create far more than paintings or sculptures, satisfying as their production may be in itself.

The art – talking about it, producing it, using it to elicit some sort of response – can be viewed as a means to something far more profound. I see it as a means back to, or into, the pre-dementia self – a way to recover the sense of identity that so many people with the condition say they fear losing.

Since 2006 the Museum of Modern Art in New York has been running something very similar to Rachel’s Ignite sessions.  Monthly Meet Me at MoMA programmes offer those with dementia and their families and carers the opportunity to come to the museum and discuss a specific work of art with trained gallery staff.

A regular user of MoMA’s sessions (a man with dementia) said they made him feel “younger, more vibrant, more connected with the world”.

It is this lasting impact, this reconnection with others, with life, with the wider world, that is so important – and it seems to be something shared by the various enterprises designed to improve the lives of those with dementia that I’ve discovered as I’ve started to write about the condition.

From Dementia Adventure’s energetic outdoor activities to Ken Howard rebuilding his trusted Harley, from the man at MoMA being reconnected with the world to the woman who, through Matisse’s The Dance, found the voice she’d lost, the common thread is the notion of people returning to something familiar, achieving something they’d used to do but now seems beyond their grasp.

With Engage and Create Rachel is using her skill as an artist and a Montessori practitioner to reach the parts that others can’t.

Each pocket of innovation – whether it involves music or reminiscence, painting or poetry – is another example, however small, of someone or some group of people or GPs or artists or entrepreneurs treating those with dementia as individuals who still have a heart, a core, a life that can be touched.

The trick lies in finding how to reach that inner soul, how to draw it from the inside out.  The more people who, like Rachel, are trying to do so, the better it is, for all of us.

In fact Rachel is already scaling up.  She’s linking with more and more art galleries and offering training to care homes in order that they can deliver their own sessions.

So if you’ll allow me a moment of indulgence to dream (it is my blog, after all), I’d like to think that in time these small inspirational enterprises scattered around the country will proliferate as people talk, word gets round, pieces are written, ideas spread and tiny pockets become pools of practice, no longer innovative but the norm.

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Rug or lino?

Living WellAt the end of a White Paper on change and transformation in the NHS comes a case study from Cornwall and the Isles of Scilly.  It involves a seemingly simple, grassroots project called Living Well, in which older people have collaborated with voluntary sector partners, local GPs, community nurses, and mental health and social workers to take control of their own futures and live as well as they can, as they want to do.

The case study is presented in the form of a film that kicks off with Pat, an Irish woman, explaining what Living Well means for her.  Asked what her life would be like were the scheme to be removed – if the rug, as her invisible interrogator puts it, were pulled from under her feet – she comes up with a wonderful Irish answer.

“I’d be back on lino, you know, because if the rug is gone from under my foot, then the old lino is underneath that, and lino is cold and bare and hard.  And that’s where my life would be again.  The comfort, the extra little bit that makes it special, would be gone”.

For me, the image that Pat describes in her gentle, lilting voice provides the perfect summary of an enlightened piece of work by health professionals Helen Bevan and Steve Fairman.

This is appropriate because the main message of their paper is that the large-scale transformation required if a hard-pressed NHS is to surmount the monumental challenges it faces will come from a different sort of change from that which we’re used to. This new form of change – which uses what’s called an “emerging direction” approach – will supplement the existing “dominant approach”.

To summarise as best I can, the dominant approach relies heavily on hierarchy and the sort of authority that comes from one’s position in an organisation. The new, emerging direction approach comes from the grass roots, from collaboration between diverse groups, from networks, shared purpose and emotional connections.  From changing people (and their mindsets) not structures.  From what cynics might call the “soft, fluffy stuff” not the hard stuff; from what Pat calls the rug and not the lino.

I should say at once that, unlike the paper’s authors, I am very far from being any sort of health professional.   I am a writer.  The closest I’ve come to understanding the ins and outs of the NHS is as a patient and as a carer to my late mum and dad.

I’m taking the liberty of writing about this particular White Paper because it contains elements that interest me.   And I’m pretty sure (unless I’ve got it all horribly wrong – always a possibility) that others whose only detailed knowledge of our health system is the same as mine, that is as its users, will share my interest.

So, in the spirit of the report itself, which describes itself as a “seek, sense, share curation effort”, I’m aiming to share what I’ve discovered.

In the few months I’ve been blogging about the elderly and dementia I’ve encountered (both in the flesh and on Twitter) enough disruptors, boat rockers and radicals in my sector to know that I like them and relate to them.   Imagine my delight then when the people the White Paper says will enable the new sort of change it envisages for the NHS are just like my new friends – non-conformist outriders operating at the edges of the organisation.

Helen Bevan and Steve Fairman are talking about individuals “capable of working with others to create success, NOT destructive troublemakers”.  They say these people “may hold the key to the kinds of transformational change approaches that health and care organisations need for the future.  Leaders should seek to identify them and engage them in the organisation’s most significant challenges”.

Step forward and take a bow Gill Phillips, Shibley Rahman, Sarah Reed, Beth Britton, Ken Howard and Kate Swaffer, a clutch of specialist dementia nurses, a sprinkling of doctors, and countless others, too many to mention, all of whom I’ve met on Twitter (some of whom I’m delighted to say I’ve now met in person), who could be said to fall into this category.

Many of those I’ve mentioned don’t even work in the health and social care sector, but they are all making constructive waves in their own distinctive way.  Some are “rocking the boat whilst staying in it” to coin a phrase; others might be said to be outside the boat, rocking in.  In the new era of change this doesn’t matter; in fact it’s very much part of the game.

As the paper states, “Cohesive networks made up of people with similar interests, professional backgrounds and interests are best for delivering small scale incremental change.  However, if we are seeking large scale, transformational change, we should be building ‘bridging’ networks that connect disparate individuals and groups that were previously disconnected”.

At this point Gill Phillips aka @WhoseShoes might like to take a little curtain call of her own as she’s the best networker I know (and I know a fair few).

But to return to where we began – to Irish Pat’s experiences of the Living Well scheme.  Hers is the compelling story of an extraordinary project that started life in 2009 as a small-scale pilot of 100 older people in Newquay with two or more long-term conditions and is now, in the words of Dr Matthew Boulter, one of the practitioners involved, “exploding beyond our wildest, most exciting dreams”.

And how did it happen?   To what does it owe its success?  The answer, as the White Paper says, is by public sector providers and commissioners – who for too long had been focussing on fixing health and social care  conditions rather than individuals – talking and listening to the older people themselves and helping them to live their lives.

Volunteers were trained in motivational interviewing and self-care techniques so that they could have guided conversations with people in their own homes, listening to their stories and understanding their motivation and requirements.

Early on, the team mapped out over 670 local groups and charities in west Cornwall and identified 48 “community makers” (existing facilitators of social activity and connectivity, such as lay pastors, charity leaders, police, councillors and schools).  They held regular workshops involving the community makers and constantly concentrated on what was important locally, drawing locals in to help provide solutions.

The White Paper is clear about why the project succeeded:  “For the team in Newquay, the ability to change really hinged upon developing personal relationships and having conversations.  The team developed a shared purpose to do things differently and lived that experience in the way that they behaved.

“The most surprising factor was the change in people, from the individuals whose lives have been transformed to the GP who says she has ‘more magic to offer’ and the volunteers who say ‘if the funding runs out, don’t worry – we know what to do now’.  The team’s quiet revolution is affecting everyone”.

The scheme ticks all the boxes of an emerging direction approach: grass roots, collaboration, networks, shared purpose and emotional connections.

For those who regard this story as the fluffed-up, over-inflated claims of a few enthusiastic individuals, hard statistics may be more convincing.   An evaluation report of the Newquay pathfinder project revealed its positive impact, including a 30pc decrease in emergency hospital admissions, a 23pc improvement in quality of life and an 87pc satisfaction rate among practitioners.

The Newquay pilot and the Living Well project it spawned embody the large-scale transformational change the White Paper says is required for the NHS and shows – another theme of the paper itself – that little ripples can have a big impact.

If my blog provides even one tenth of one tiny ripple I will have played some part in this quiet revolution and it will have been worth me writing it – and you reading it.

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The unending grief of the dementia carer

Radio 4 logoJust as I was about to post this week’s blog I set it aside in favour of another.   I did so because of a remarkable interview on Radio 4 between John Humphrys, the Today programme’s resident Rottweiler, and Denise Stevens, who cares for her husband Mike, who has dementia.

It’s only a few months since I devoted a blog to another Humphrys’ interview in which two people with dementia, and their spouses (and  carers) were given the prime-time 8.10am slot to explain what it was really like to live with the condition.   I described this as a significant step towards normalising dementia.

So I hesitated before inflicting John Humphrys, Radio 4 and the Today programme on anyone yet again – it hardly seems fair.  But it was such an insightful, moving piece that I felt compelled to do so, particularly as it has just been revealed that those with dementia and their unpaid family carers shoulder two-thirds of the staggering £26 billion that the condition costs this country every year.

The interview came at the end of a week when each day a different presenter explored the NHS from a personal perspective.  Humphrys began his piece by recollecting his own father’s dementia and the way, towards the end, he had “turned his face to the wall” and died.

This revelation set the tone for an item that had the feel of a conversation between two individuals who shared the experience of having a close relative with dementia, on which we listeners (all 7 million of us) were eavesdropping.

It reinforced yet again – if anyone still doubts it – that those best placed to spread the word about, to increase understanding and awareness of, and to reduce the stigma surrounding dementia are those who have it and their carers.  By definition, a rapidly growing number of us.

In Denise, the Today programme had found an unusually thoughtful and open woman whose frequent pauses spoke volumes and must surely have resonated with anyone who has brushed, however lightly, with the condition.

She began by painting a picture of Mike, diagnosed 11 years ago when he was just 52, as an optimistic man able to deal with anything as long as he was happy in the now, and who wasn’t afraid to tell others that he had dementia.

Humphrys listened, waited and paused before asking Denise how she coped with her husband’s illness.   There was a resignation in his normally brusque Welsh voice, a hint of the understanding that was to come and, for me, the quick realisation that this interview, unlike the last, was to centre on the carer.

Denise showed no self-pity as she explained how she is adapting to changing circumstances as best she can.  Her voice betrayed a hint of the emotion which, though never far from the surface, she was able to contain.

Sitting in my kitchen, toast midway to my lips, I listened to a woman in the process of great change, wrestling with it and its many challenges, and just about managing to maintain her poise.  I recognised that woman.

It was several years ago now and I only took on a small fraction of what Denise is having to cope with.  My relative was my mum, not my husband, and I didn’t live with her so it was much, much easier.  But I know what it is to ride the roller-coaster of those turbulent, near-impossible times, and I’ve written about it here.

Denise is unusual though.  She is someone who, even as she’s in the midst of the chaos of transformation and loss, seems able to analyse and articulate it.

Introducing her, Humphrys said that of all the voices he had heard on the subject of dementia, hers was the most compelling.  He declared that her experience gave her a moral authority and as they talked his tone conveyed a rare respect for her.

One of the most affecting passages was when Denise described losing Mike little by little, without the completeness or solace of grief – an experience which anyone with a loved one with dementia will recognise only too well.

“There is a stone inside you that makes you feel that this isn’t a life.  You are getting through from one day to another but you are still able to see him, to touch him and communicate. But every stage is so painful, so painful – when you lose part of something that he is no longer able to do, which could be feeding himself or dressing himself – and as these stages progress, you just get such a sadness, such a weight inside, and that just gets bigger and bigger, so it is a constant grief”.

Later, when Humphrys asked her perhaps his most challenging question – what happens when the positive is overwhelmed by the negative and Mike might not want to live – he revealed that this was what his own father had wanted.  Denise struggled to answer, admitting that if she were in her husband’s shoes she wouldn’t want to live but also that she couldn’t do anything to help him to do this were it his wish.

It was a moment of raw truth in an extraordinary radio broadcast that laid bare the carer’s lot in all its emotional complexity.  I’d urge everyone to spare 10 minutes from their busy day and listen to it.

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Elizabeth is Missing

Elizabeth-is-Missing-final-UK-cover-copy

Elizabeth is Missing is an unusually bold and clever novel: a 70-year-old mystery narrated by an old lady with the beginnings of dementia.

Maud is funny and sharp.  She is observant and self- aware.  She is also living through what must be one of the most frightening stages of her condition: she knows that she is forgetful and that others, including her middle-aged daughter Helen, think she is mad.  She isn’t.

Through the witty, perceptive writing of author Emma Healey, we inhabit Maud’s head, we see through her eyes and hear through her ears: we experience the world as she does and come as close as anyone without dementia possibly can to knowing what it’s like to live with it.

And we realise very quickly that Maud also knows that her friend Elizabeth is missing.  She knows because the countless notes she is constantly writing herself (which she calls in a wonderful example of her occasionally still sharp wit her “paper memory”) tell her so.

On one very over-simplified level Elizabeth is Missing could be read as a Dementia Friends’ manual showing what it’s like to live with the condition, written by a mistress of the “show not tell” technique beloved of every creative writing course.

Take this early passage in which Maud’s irritation at Helen refusing to believe that Elizabeth is missing bubbles over into anger.

“I’m tired of the sympathetic smiles and the little pats people give you when you get things confused, and I’m bloody fed up with everyone deferring to Helen rather than listening to what I have to say.  My heartbeat quickens and I clench my teeth.  I have a terrible urge to kick Helen under the table.  I kick the table leg instead.  The shiny salt and pepper shakers rattle against each other and a wine glass starts to topple.  Helen catches it.

‘Mum,’ she says.  ‘Be careful.  You’ll break something.’

“I don’t answer; my teeth are still tight together.  I feel I might start screaming, but breaking something, that’s a good idea.  That’s exactly what I want to do.  I pick up my butter knife and stab it into the black side plate.  The china breaks.  Helen says something, swearing I think, and somebody rushes towards me.   I keep looking at the plate.”

The almost intolerable frustration of someone with dementia, other people’s lack of understanding and a carer’s stress are all contained in this vignette.

But the novel is far, far more than a close examination – astute as it is – of what it is to have dementia.  It’s a sensitive exploration of the complexities of a family, of sisterly tenderness spiced with envy, and of what happens when a sudden event blows a hole in everyday life; it’s a haunting portrayal of wistful old age with its yearning for youth and its flickering memories of what once was.  Above all it’s a suspenseful mystery with a cast of well-drawn characters, an intriguing plot and some superlative writing.

Dementia, it has to be said, is a useful literary device for any work of fiction because it allows the author to skip from present to past with almost wilful abandon, just as Maud’s mind does.   Healey’s light touch, her attention to detail and the deft way with which her writing segues to and fro, from now to then, from age to youth, as the story unfolds are what make this book special.

Maud, still innately intelligent in many ways, struggles with simple tasks, such as making a cup of tea and setting the table.  As she mimics the action of cutting food in her attempt to remember which side the knife and fork should go, Helen walks in and asks what she’s doing, chivvying her, embarrassing her.

“I don’t look up.  It’s such a little thing – knowing where to put cutlery – but I feel like I’ve failed an important test.  A little piece of me is gone.

‘It looks very nice,’ Helen says, her voice too bright.  She walks round the table and I watch her out of the corner of my eye.  I see her look at me.  I see her hesitate and then quickly swap the knife and fork.  She says nothing.  Doesn’t point out my mistake.

‘I don’t want to set the table again,’ I say”.

The sense of loss, the brittle nature of a once familiar mother-daughter relationship strained to breaking point by Maud’s dementia are all distilled in this mundane little scene.

And all the while, as Maud’s world becomes our world and her frustration at not being listened to, not being believed, is translated into our own, ancient clues to the ongoing intrigue are being plucked from the past and dropped into the story like preserved maraschino cherries into cake mix, building the suspense and driving the narrative towards its decades-old denouement.

“How do you solve a mystery when you can’t remember the clues?”  The tantalising strapline on the book’s cover drew me in and made me turn the first page.  From then on I was hooked, not just on the storyline, but on Maud – on being utterly and completely inside her head and on appreciating as I’ve never done before what it’s like to have dementia.

In her remarkable debut Emma Healey presents us with an assured and intriguing  psychological whodunnit of a novel.   But she does something much more.  She offers us, on the side as it were – lightly, chillingly and oh so cleverly – a penetrating insight into what it’s like not to remember the clues to living your life, to live in a cloud of confusion, hovering between then and now, between the past and the present, to know that other people think you’re mad, and to know that you are not.   It is an extraordinary and compelling book that everyone should read.

Elizabeth is Missing by Emma Healey is published by Penguin, priced £12.99.  In January 2015 it won the Costa First Novel award.

Emma’s second novel Whistle in the Dark will be published on 3 May 2018 by Viking.

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Cure. Care. Humanity.

8462732211_c916db8742_oWhen I heard about the three different eras of dementia that have occurred in Japan – a country whose treatment of those living with the condition is said to be one of the most progressive in the world – I was intrigued and vowed to learn more.

It’s taken me a few weeks but I now know that the first era, the era of the cure, happened during the 1980s, when people with dementia were commonly regarded as no longer able to understand, placed in care homes and given medication.

The second era, the era of care, came in the 1990s, when a form of sub-standard person-centred care was introduced to enable those with dementia to live their life with support from others.  Although this era was laudable in its aims and marked a profound shift in approach, the pioneering treatments (such as music, reminiscence and art therapies) were foisted on care homes without any thought being given to what their residents might actually want.  There was no “reciprocal purpose”.

The third, current, phase is known as the era of reciprocity, where people are regarded not as care givers and care receivers but as treasured partners.  I immediately warmed to the Oriental-style respect inherent in this phrase.  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.

When I discovered all this – through Karin Diamond’s insightful report of her month-long trip to Japan to research theatre and memory work with older people – I experienced a flutter of recognition.   It seems to me that though Japan’s enviable approach to those with dementia may not be mainstream in this country, many of the inspirational individuals I’ve recently met (and blogged about) are living, walking and breathing straight into a new era of reciprocity right here in the UK.  Now it’s up to others involved in dementia care to follow in their footsteps.

Karin, who has worked in theatre, film and TV for over 20 years, runs Re-Live in Cardiff with Alison O’Connor, a trained cognitive behavioural counsellor.  As well as their innovative documentary drama and life story work with older people, the pair train professionals working with those who have dementia, using the reciprocal practices that Karin witnessed in Japan.

The testimonials on their website and the descriptions of their work offer no sense of passive recipients of enforced care, but rather an interaction between residents and staff, where, according to Dan Morgan, a former Cardiff care home manager, “even people with the most advanced dementia are able to contribute to and gain from meaningful activities”.

Re-live isn’t operating in a vacuum.    Dementia Care Matters, which provides support, training, resources and research throughout the UK, is committed to breaking down the barriers between carer and cared for.  Sally Knocker, one of its consultants, believes that reminiscence provides a wonderful opportunity to do this.

“We get staff involved – we ask them to bring in three objects of importance in their lives because we want them as individual people, not as staff.   Through reminiscing, connections are made and friendships are forged”.

It’s interesting to compare Sally’s words with those used by Karin Diamond in her Churchill Fellowship film report about her trip to Japan, where older people live in small, group homes and staff ensure that they know the history of each individual resident by visiting places of significance to them in their previous life.

“An in-depth understanding of the person leads to the residents and staff becoming irreplaceable for one another,” Karin explains.  “And residents are friends who live the rest of their lives under one roof”.

Her accounts of life in these small Japanese group homes tell of the ebb and flow between residents and staff.   When an old lady visits her family grave she becomes upset.  The staff member accompanying her places an arm around her but later admits that she didn’t know what to say – but also that “she felt in touch with this woman’s existence and couldn’t help but think of her own existence and life”.    As Karin observes, “Humanity is fostered in the warmth of interpersonal relationships”.

Karin’s striking description of one woman being in touch with another’s existence and, through this, somehow reaching into her own self and her own life, brought to mind a third woman I’ve recently encountered here in the UK.

In 2007 Susanna Howard, an accomplished actor, producer and writer, created Living Words, an arts and literature organisation whose work “enables individuals to feel heard and understood, even when communication seems lost.”

Her passion and enthusiasm is apparent from the moment she opens her mouth and talks – fluently, wittily, cleverly and very, very fast – about what she does.   Susanna and her associates work on a one-to-one basis with people with dementia, listening to their stories, recording their words and “connecting through emotion”.

“You listen at a different level,” she explained to her audience at a recent event.  “Behind the words you hear different things.  It is a validation of how the person feels”.

The Living Words website reveals how much its philosophy towards those with dementia mirrors Japan’s.   Running through many of the descriptions is an interchange (refreshingly devoid of “them” and “us” labels) between those without a voice, noticeably those with dementia, and those working with them.

Susanna turns the words garnered from residents in care settings and communities into publications and plays, thus placing the vocabulary of those with dementia literally centre stage.

The promotional material for Weave, which she created in 2012, describes it as “One woman’s experience of working with people with dementia – and the words that changed her life”.   The interplay between the inspirer and the inspired, the influenced and those influencing her, is subtly yet surprisingly made: it is the change in Karin’s own life that is mentioned, not the difference she surely makes to the lives of those with whom she works.

One of Ken Howard's 12 rules for living with dementia in his Whose Shoes guest blog

One of Ken Howard’s 12 rules for living with dementia in his Whose Shoes guest blog

In my guest blog about a dementia innovations conference in London I spoke of Ken Howard, biker extraordinaire, who participated in a PechaKucha session with Gill Phillips of Whose Shoes?  Ken, as many readers will know, lives with dementia, as does Dr Trevor Jarvis, another of the day’s stars.  The placing of these two people at the heart of the event said much about it and about our growing sense of reciprocity – our growing determination here in the UK to listen to and learn from (rather than care for in an overly paternalistic or patronising fashion) people with dementia.

At the end of her fascinating account of her Japanese trip Karin Diamond draws several personal conclusions which are worth repeating and which, in the spirit of the report itself, apply equally to those with dementia as those without.

The first is that we each undergo a lifelong personal development that continues until the very end of our existence.

Secondly, that as their condition progresses those with dementia lose awareness of their connections with other people and even with themselves, so that it is as if they are deprived not only of their identity but of their existence.

The frightening prospect of Karin’s second conclusion is to some extent offset by her third, which is that a respect for the connections between us allows us to feel the existence of others and, importantly, ourselves (as shown by the carer’s experience at the family grave).

Fourthly, there is always something new to be gained from sharing experiences.

I’ve mused several times in my blogs about the passionate, energised change-makers I’ve been privileged to encounter since becoming involved with what I call the dementia community.  Our group includes people living with and without the condition.  Most (if not all) of us have been touched by the condition in one way or another and are determined to raise awareness of what it is, lay to rest the stigma that still surrounds it and help to create a world in which it is possible for those who have it to live as well as they possibly can.

The dementia friendly community – both the smallish one of which I’m a part and the greater one that constitutes society – is about human connections.  It’s about forging new relationships and nurturing a mutual respect for each other.  It’s about humanity, I realise, as I take in Karin’s report of her trip to Japan.  Nothing more and nothing less.

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Risk v. Silent Harms

riskI’ve been toying with the idea of writing a blog about risk and people living with dementia for some time now, and a recent Times article with the provocative headline, “People with dementia told to start living dangerously” provided the impetus I needed.

The fact that these nudges often occur when I’m deciding on a topic strikes me as positive: hardly a day goes past now without dementia cropping up in one form or other in the national press and shoving me gently in the ribs.  Good.   It means we’re talking about it, airing the subject, debunking myths, blowing away the stigma and raising awareness.

The Times piece turned out to be about Neil Mapes, founder of Dementia Adventure, a social enterprise I’d already encountered via the wonderful global cocktail party formerly known as Twitter.

This award-winning organisation, whose work is evidence-based, came about as a result of Neil’s frustration at the sedentary activities offered to people with dementia, often leading to a downward spiral of low energy, low self-esteem and loneliness.  Instead, he wants to connect them with nature, to give them genuine choices and a sense of adventure.

“We know that as little as five minutes outdoors lifts your mood and can improve self-esteem,” explained Neil. “Walking for 40 minutes three times a week boosts the parts of the brain that shrink with age and promotes the growth of new cells in the brain”.

How life-affirming is that.  And, as I’m beginning to find myself repeating as if it were some sort of mantra – and no less true for that – how simple.

Lucy Harding, a director and founder of Dementia Adventure described how they took two men who are living with the condition, plus one wife and a son, on a Cornish sailing trip.  “They had the most wonderful time.  Both men had a connection with the sea and they were going home, going back to something they loved and which they possibly thought they wouldn’t do again”.

I was struck by the phrase “going home”.  In a broader sense Lucy could be describing the two men reconnecting with their pre-dementia selves, with who they are.

A Department of Health report encouragingly titled, “Nothing Ventured, Nothing Gained,” explores the role risk plays, and should be allowed to have, in the lives of those living with dementia.  In doing so it drills down into people’s individuality, the attributes and skills they possessed before they developed the condition and how these can determine the best way for them to live with it.

What we are talking about, as the paper acknowledges, is none other than our old friends person-centred care and life story work.  “Lives, like stories, have a trajectory through time,” says the report.  “What comes before affects – and to some extent determines – what happens next”.

Of course it does.  It’s not rocket science (another phrase fast becoming a mantra among the dementia community of which I now hope to count myself a member).   One person’s idea of unacceptable risk is another’s raison d’etre – take away the element of risk in someone’s life and you take away part of his or her self.

These stealthy thefts of identity are what Professor Charlotte Clarke of Edinburgh University calls “silent harms” – when efforts to safeguard people with dementia compromise other aspects of their wellbeing. This can lead to them being, in a chilling, rather 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,” he said.  “Not to dare is to lose oneself”.

It’s this aspect of risk – its key role in a human’s free will and the part that it plays in our identity through the choices we make – rather than its place in ‘elf and safety, that I find really intriguing. For it’s beginning to seem to me that our approach to this element of risk is yet another example of how all roads travelled in best dementia care lead back to person-centred practice.

Of course, the idea of putting vulnerable loved ones in risky situations – whether physically dangerous or socially embarrassing – is difficult.   Author and broadcaster Sally Magnusson described this very well in a speech I heard her give earlier this year.

Sally’s mother Mamie Baird was a journalist and a superlative writer; even when her dementia was well advanced she retained her keen interest in words and her ability to pun and spell.  Sally asked molecular neurobiologist Dr Frank Gunn- Moore why this might be, expecting him to launch into a long medical explanation.  Instead he simply replied, “Because words have been the essence of your mother all along”.

To take Mamie’s words away from her would be to rob her of herself.  So when, in the advanced stages of dementia, she insisted that she wanted to give the address at a friend’s funeral, her daughters set aside their misgivings and Sally wrote a speech for her mother to deliver.

“I knew we were on the edge of the possible here,” writes Sally in her book, Where Memories Go.  “But I wanted so passionately to give you (Mamie) the chance to be yourself and feel the adrenaline of performance pumping through your veins again”.

The gamble appeared to pay off.   Mamie delivered the speech like the old pro she was, “revelling in the attention of dozens of friendly mourners” and making it to the final sentence without a tremor.  But then, to Sally’s horror, Mamie turned over the last page and started the speech all over again.

As Sally sat, rooted to the spot, embarrassed for her mother and overwhelmed with guilt at placing her in such a risky position, the congregation erupted in spontaneous applause.  Mamie was thrilled.  As Sally later said, “The problem wasn’t hers, but mine”.

It is all of ours.  Mamie was among friends who understood her; if we in the wider community – and, more importantly, those running and working in care homes and other facilities provided for, and used by, those with dementia – had a better understanding of the condition, we (and they) would be more forgiving of people repeating themselves, forgetting their words, stumbling over their change or even starting to shout and rant.

And we would (or certainly should) do all that we can to help them live as well as they can – including helping them to retain their individuality, their personality, their choice and their chance to take risks for as long as they want for as long as they can.  It’s hardly rocket science, is it?

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Ken Howard. Biker. Granddad. Free Thinker.

 

One of Ken Howard's 12 rules for living with dementia in his Whose Shoes guest blog

One of Ken Howard’s 12 rules for living with dementia in his Whose Shoes? guest blog

When I launched my website five months ago I wanted its home page to reflect who I am.  I thought about this and came up with my three tabs: Writer, Campaigner, Mum.  Strictly speaking, if my different hats were placed in order of priority, Mum would come first, but then the rhythm created isn’t as good, so I decided to go with the musicality of the syllables.   Besides, regardless of the form the words take, they sum me up.

Were I to develop dementia and be forced to live in a care home my home page could be very different.  My three tabs might well read: Pippa Kelly, Dementia, Sometimes Aggressive.

It was a chilling point, well made by Sally Knocker, one of the speakers at a dementia conference I attended this week, to show how the fact that you have the condition (as opposed to the condition itself) strips you of your identity in the eyes of others.  Sally is a consultant with Dementia Care Matters, an organisation that provides support, training, resources and research throughout the UK.

Ken Howard & me at another (warmer) conference

The previous day I’d been fortunate enough to meet, albeit too briefly, someone about whom I’d read enough to think that I’d like him.   Ken Howard’s Twitter profile describes him as an old biker (still riding), a sci-fi fan, a granddad, a history and music lover and a free thinker.  I can’t argue with any of that, but having met him I’d add that he’s also a force of nature and (I hope he won’t mind this) a gentle giant – with a barrel-load of common sense resting on his broad shoulders.  Needless to say, I liked him. Ken Howard, as his Twitter profile also states, is “living with and fighting dementia as a way of life”.

I had been introduced to Ken – both through the wonderful global cocktail party that is Twitter and in real life – by Gill Phillips of Whose Shoes? fame, and as the three of us sat in the London sunshine and talked about dementia’s impact on Ken’s life I was struck, once again, by how much discussions around living well with dementia have to tell us about life.  And how, so often, the key lies in keeping things simple.

Ken explained how he initially became very depressed after his diagnosis eight years ago but was pulled around by a realisation that, though his life had changed and he was, in that sense, a different person, he was (in another sense) still the same.  Or, as he put it in his Whose Shoes? blog for NHS Change Day, “Nothing changes but everything’s different”.    This is true, and expressed as such seems pretty obvious, but a dementia diagnosis is also, as Ken says, “a mental death sentence (only if you allow it to be)”.  I suspect that it’s one of those rare events that you can only really begin to comprehend if it’s happened to you.

Ken, like so many others in his situation, wasn’t offered much in the way of support at the time of his diagnosis.  He had a useful chat with someone from the Alzheimer’s Society but after he’d explained to her that his dementia made it virtually impossible for him to read, she then left him with a pamphlet.

What Ken actually wanted, he now realises – and what he calls for as he tours the country speaking out about his experiences with, and coping mechanisms for, dementia – was an immediate post-diagnosis chat with someone else who is living with the condition.

How simple is that.  How easy.  Time and again those of us who come together to share our passion for improving the lives of people with dementia find ourselves declaring, as we stumble upon something constructive, that it really isn’t rocket science.

The same could be said of many things in life.  The best ideas are, after all, simple.   Yet if they were that simple we’d all have thought of them, pocketed the proceeds of our ample brains and jetted off to the Bahamas.

In my last blog I spoke of the belated recognition that the best dementia care is person centred – that is, seeing the person first and then the dementia, and how, put like that it seemed so obvious that it was extraordinary that we didn’t all automatically do it.  But we don’t.  Humans are contrary beings, we often act en masse quite differently from how we act one-to-one, following the herd, wandering around in circles for some time before one of us finds the gate.

I think to a certain extent that this may be what we’ve been doing in terms of our approach to dementia.   The amorphous mass that is society doesn’t properly understand what it is and, as with most things that aren’t understood, dementia has become an object of fear – and because it’s feared, it’s shied away from.  Now, slowly, with the help of people like Ken – and Kate Swaffer and Chris Roberts and countless others who are living with the condition, speaking out and, most importantly, showing the rest of us that they’re normal, things are finally beginning to change.  Hence, as I said at the time, the tremendous importance of two people with dementia being interviewed by the veteran broadcaster John Humphrys on Radio 4’s flagship Today programme – and heard by 7 million listeners.

Sally Knocker was speaking at a conference on reminiscing in dementia care hosted by the European Reminiscence Network, at which 12 countries were represented.   During one workshop the wife of someone with dementia spoke of how she and her husband had begun to withdraw from social contact after his diagnosis, and how important attending a reminiscence group had been for the pair of them.

“Going to the group helped both of us articulate what being a couple – and being individuals – meant to us.  The group gave us the feeling that we were fun to be with; the facilitators helped people to find their place.  It was profoundly moving”.

Kate explained how her husband’s dementia had produced a “huge sense of loss” in her and how the group helped her and her husband to reconnect.   “It was something to do with shame,” she said, “and the power of recognition that melts the shame”.

Shame, fear, loss – all such sad and negative emotions that combine to produce the stigma still attached to dementia.  Help to remove those words, those unhelpful labels – to show that they’re not the right ones to use – and perhaps we can start to get rid of the stigma.

Ken has a shelf life (his words) and there’s an urgency and a passion about what he’s doing – he says he loves spreading his key messages at Whose Shoes? sessions around the country. He may not be able to read and write very easily any more but he can still talk.  Fluently, cogently, with shedloads of sense.   If we want to improve the lives of those who are living with dementia, we could do a lot worse than to take heed of those who like Ken (biker, granddad, free thinker) are speaking out about their condition and how they’d like to be treated.

After all, they know what they’re talking about.   Perhaps it’s us, the rest of society, who are finding it hard to listen to what they’ve got to say.

*

This Thursday (3 July) Gill and Ken are taking part at an Innovation in Dementia event at the Barbican, London: http://www.openforumevents.co.uk/dementia-innovation-programme/ 

This Friday (4 July) they are on a live WebEx hosted by the NHS transformation team, talking about their NHS Change Day campaign and the impact it is having: http://linkis.com/changeday.nhs.uk/fil/EYZGC  

Here are Ken and Gill at their “Google Hangout” at Expo 2014: http://www.youtube.com/watch?v=haq1mwEdp_8

 

 

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Memory – the sum of our past

Memory.  Even before I began to write about dementia the subject fascinated me.   At university I studied for an English degree that included post-structuralist readings of the Romantic poets (don’t even ask) and decided, in my 22-year-old wisdom, that memory as such doesn’t really exist.

@trainingcarers Imagine big days in your life & the people you love all on your wall in a beautiful mural. #deardementia #carersweek

@trainingcarers Imagine big days in your life & the people you love all on your wall in a beautiful mural. #deardementia #carersweek

What happened, I argued in one particularly tortuous essay, was that when we remember something we dismember it only to – literally – re-member it.  In other words, we recreate or reconstruct our past.

Now, in light of what I am learning about the treatment of those with dementia, my “Pseud’s Corner” musings are taking on a new, more useful meaning.

It is being widely recognised, rather belatedly, that the best dementia care is person centred – that is, seeing the individual first and then their dementia.  Written like this it seems extraordinary that we don’t all – let alone medical and care professionals – do so automatically.  But therein lies one of the many cruelties of having dementia: its ability to make others see you differently, thus nurturing the fear and lingering stigma that all right-thinking people want to eradicate.

I liked the compelling simplicity of a presentation slide recently tweeted that said simply “PERSON with dementia” not “person with DEMENTIA”.   I like to think that the late Tom Kitwood, who pioneered person-centred dementia care back in the 1990s, would be delighted with this.

With a person-centred approach comes life story work – building up biographies of people living with dementia through all the different facets that make them who they are – their family and friends, their former work, their likes and dislikes, their hobbies and communities.

Their life is recorded, not as Wordsworth might have done in The Prelude (for which many might breathe a sigh of relief), but in a framework that enables those working with them to deliver care that is centred on each unique individual.   In a sense – in my disappearing-up-my-own-backside undergraduate sense but with a more constructive outcome – their memories are being re-membered or reconstructed for them by those who know and love them best.

As an added bonus, because the recording process is collaborative – with family and friends taking part and providing photos and images to bring individual stories to life – it is rewarding and beneficial in and of itself.  As one family carer said, “Doing life story work with my husband has made a difference to our relationship.  I thought we had nothing in common these days but doing the life story made me realise we had a lifetime of experience and joy.  My husband loves looking at the photos of us all”.

Before she became too ill my mum loved looking at photos of us all when we were younger, and I wish I’d sat down with her more often and talked about what she could remember while she could still remember.  I’m haunted by the moment, a few days after she’d moved into her nursing home, when she sat in the garden and told me she’d cried herself to sleep the previous night because she couldn’t remember her life.

Recovering, re-membering lost memories through the use of memory triggers, forms a valuable part of good dementia care and now more and more innovative ways are being found to forge invaluable links.

Training for Carers tweets some pithy and thought-provoking ideas.  A recent one featured an imaginative method of presenting someone’s life story: “Pls RT All the big days of your life & the people you love on your wall as a beautiful mural” together with a photo of a painted tree of life showing just that.  How clever, and neat, and – more importantly – dementia friendly.

A care home in Ireland has gone one step further.  At Kiltipper Woods in Tallaght residents have created a Friendship Tree by bringing a 6ft tree in from the garden and festooning it with mementos that hold special meanings.

Ribbons tied in bows remind one lady of attending dances when she was younger, of dressing up and putting on her make-up.   Her daughter is going to bring in some golf tees to hang on the tree because golf was a big part of her parents’ lives.

I have just come across @kimfribbins on Twitter.  She makes memory quilts.  Her profile picture features, not her, but bespoke quilts stitched together with the dates and photographs of those close to the person with dementia or memory loss.  Not only are the patchwork pieces beautiful, practical and comforting, they also provide immediate conversation starters for family and carers.  What a fabulous idea.

In 2008, spurred on by her mother’s decade of living with dementia, Sarah Reed created “Many Happy Returns” chatterbox cards.  Each set contains 26 memory trigger cards from the 1940s to prompt conversations.   A 1950s set was launched in September 2010 and the cards can now be found in over 3,000 care homes, community and day centres, hospitals, schools and family homes around the country.

The first entry in the feedback section of Sarah’s website reveals the value of the cards for those with dementia.  It tells of a woman who, collecting a relative from a dementia club, noticed an elderly lady sitting alone.   The woman sat down and used the cards (which she had brought with her intending to offer them to the club) to start up a conversation between herself, the club’s organiser and the old lady.

Prompted by the cards, the OAP began to chat and it emerged that she had been a shorthand typist and that her fighter pilot brother had been killed during the war, something about which she was still, years later, very upset.  It transpired that this was the longest conversation that the club’s organiser and the elderly lady had ever had.

Dementia campaigner Beth Britton wrote a blog a few years ago entitled Don’t Forget to Remember (scroll down to 11 Oct 2012).   The title alone made me want to read on.   When I did I discovered a typically lucid exposition of the power of reminiscing.

Beth makes the very good point that most of us (whether living with dementia or not), have moments when we yearn for our carefree youth.   So it’s a mistake, she argues, always to try to drag people with dementia into the present – which they may well find confusing or frightening – and instead we should join them in their past.  Which in many ways of course has become their present.

And so I return full circle to my student undergrad discourse and what constitutes memory, what constitutes us.  I return to the “me, myself, I” of who we each are, which is in no small measure the sum of our past.  All of us should surely do everything that we can, however we can, to help people with dementia keep hold of this precious thing, this sense of self.

As Professor Kitwood said in 1992, “As we go through life we build up a personal history with its unique mixture of joys and pleasures, sadness and pain. Our sense of who we are is linked to that history and if we lose that history, we lose something of ourselves. For a person with dementia who is losing their memory and trying most of the time to make sense of who they are, a life story book can be an atlas, the compass, the guide to finding their self.”   

I’d like to think that even my verbose, rather too cocky, undergrad self wouldn’t have had the nerve to add to that.  But then again, who knows?

***

Dear Dementia by Ian Donaghy of Training for Carers is out on 16 June, published by Hawker Publications.

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D Day Heroes – et al

photo (3)I was immensely privileged to have been invited to the Founder’s Day parade at the Royal Chelsea Hospital this week.  It took place on a bright, blustery morning just before D Day and, though I should have been prepared, I found myself ambushed by emotion as I watched the marching ranks of scarlet-suited pensioners, average age 82 years and six months.

The parade took less than two hours but the spectacle that unfolded before those of us lucky enough to be in the audience might have been the distilled essence of all that it is to be dignified, courageous, disciplined, proud and old.

That the old soldiers stood unflinching for so long, the red tails of their uniforms catching the breeze, was enough in itself.  But they stood upright, they quick-marched in pretty much perfect step within the Figure Court of the elegant hospital buildings commissioned by Charles II in 1681.

Those who couldn’t march sat on the parade ground and half a dozen or so almost stole the show when they took the salute from the Duke of Kent on their mobility scooters.  Others, too infirm to attend at all, remained in the newly refurbished infirmary.

What struck me, apart from the sharpness of their salutes (even when some of the old hands trembled involuntarily) and the obvious pride in their bearing, was how rare it is that we in this country venerate our elders, old soldiers or not.

It reminded me of a Remembrance Sunday several years ago when my dad was still alive.   He fought in the Second World War and the only time he went to church was to commemorate those who had fallen – the war, he said, had knocked religion out of him.

On this particular Sunday he was already very frail, confined to a wheelchair, but determined to go, his ribbon of freshly polished medals gleaming on his chest.  After the service as we were gathered around the cenotaph of the village church a stranger walked up to him and said, “Thank you”.  That was it; just two words.  I didn’t know what she meant at first, but dad did and his rheumy old eyes misted up.

Of course her particular expression of gratitude was for what dad had done in the war.  But why don’t we admire and acknowledge our elders more?  Why do we fettishise youth, with its lack of perspective, its frequent arrogance and lack of maturity instead of showing respect for wiser heads?  It’s true that in some walks of life we do – MPs debating in the chamber of the House of Commons, for example, sometimes defer to “the Father of the House”, meaning the longest serving Member (currently Sir Peter Tapsell).

Generally though we tend to push our elderly aside, consigning them to care homes, out-sourcing their well-being to staff paid less than my 16-year-old daughter is paid for babysitting.  Once they no longer contribute to the economy in the world of work we seem to regard people as worth less than they once were, if not completely worthless.

This is not only unkind, wrong and unethical; it doesn’t make sense.   Particularly now that we’re living to an older age and to be 50, 60 or 70 is no longer to be past it – I speak with some experience of the lower slopes here.

In Native American tribal communities, on the other hand – and in contrast to the norms of contemporary America – older people are respected for their wisdom and maturity.   Which, unlike the view we take, makes very good sense. Just because someone is retired doesn’t mean they have nothing to bring to the party.  They may no longer have a fancy job title, a full head of hair or perfect abs, but they have a wealth of experience.

In China, as in India, placing parents in a nursing home is considered dishonourable – although, since the introduction of the one-child policy in China, this tradition is beginning to break down and nursing homes are becoming more acceptable.   Progress or regression?  Discuss.

Hand in hand with Western society’s dismissive, negative view of old age is our fear of dying.   In Afro-American culture, by contrast, death is viewed as part of the natural rhythm of life (which, if you think about it, cannot be denied) and is seen as something to be celebrated.

A few years ago a Caribbean neighbour passed away.  She’d lived in our street since the 1950s and when she died her extended family moved into her house for a fortnight and enjoyed what my husband and I dubbed a “reggae wake”.  The dancing and festivities started at about 5pm and went on all night, with the family retiring to sleep off the party until mid-afternoon only to wake up and start all over again.  There was something gloriously anarchic and joyous about this happening in a leafy part of London more normally associated with bankers than rastafarians, though I must admit that after a few nights of Bob Marley pounding out his bass grooves across our garden at 4am the “natural rhythms of life” lost some of their appeal.

But what is it that these other cultures have managed to retain today that we’ve somehow lost along the way?  I don’t have the answers, but I’m beginning to realise as I stride further into my 50s, and with the deaths of both my parents lengthening the shades of my own mortality, that the present way certainly isn’t right.

Watching the Chelsea pensioners standing to attention, knowing the effort of will that it must have taken many of them simply to stand for so long and thinking of the pain and fatigue that they’ll have suffered the following day – and then realising that this was nothing to what they’d experienced 70 years before – was humbling.

More than that – and more than the immense gratitude for what these old soldiers did so that you and I could live and speak and write and argue as freely as we do – those two hours reminded me that the elderly in our society surely deserve far greater respect than we currently show them.

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Normalising Dementia

5137587651_99b258699e_oA small piece of history was made this week.  It involved the BBC’s flagship current affairs Today programme, its veteran presenter John Humphrys and the normalising of dementia.

Aired in the primetime 8.10am slot normally reserved for Prime Ministers and chief executives of beleaguered FTSE 100 companies, a report by Radio 4’s most famous Welshman did more to dispel the lingering stigma attached to this misunderstood condition than any celebrity-led campaign could ever do, no matter how big the star.

In the first of a two-parter on the subject Humphrys didn’t blind us with science, regale us with numbers of sufferers, or introduce us to experts to do that for him.  Instead, having explained why the use of passive vocabulary such as “sufferers” reveals just the sort of unthinking attitude that helps to feed our fear of dementia, he introduced us to two people who know exactly what it’s like to have it because they do.

Linda and Grace – aided and abetted by their respective husbands and the man better known for his sharp interruptions than his empathy – showed that while being diagnosed with dementia is, in Linda’s words a “pissing, shitting, bastard of a thing” that makes her justifiably angry, they’re still them, still human, still normal.

Grace summed it up well.  “I live day to day, week to week; I know I have dementia, I know that it’s likely to get worse.  I just seem to be, in my husband’s eyes and in my eyes, normal”.

And that, as Humphrys said – and extraordinary as it seems midway through the second decade of the 21st century – is a breakthrough.

At the beginning of his interview with Linda, Humphrys seemed (unusually for him) to be lost for words.   She was, he said, “so far removed from the lazy stereotype of a dementia victim that it’s hard to know where to begin – I suppose not treating her as a victim is a start”.

It is indeed, Mr Humphrys.  And when done in front of 7million listeners, by you, it matters.   A lot.  The fact that Grace and Linda took pole position, relegating dementia experts such as Alistair Burns, clinical director for dementia, NHS England, into second place the following day (in an earlier, less prestigious slot) is also important.

I’ve been writing on dementia for long enough to know that many of those who have it dislike being perceived as victims almost as much as they dislike being left out of discussions about themselves.

In the absence of a cure many, like Linda and Grace, are intent on making the best of their lives, on raising awareness of what dementia really is – the umbrella term for scores of brain-altering incurable diseases, some of which affect younger people – and on eliminating stigma.   This week, on prime-time radio, they came closer to achieving those aims.

Listen here and see if you agree.

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The complexities of grief

A few years before my dad died I sat up drinking with a girlfriend and found myself telling her – much to my surprise and with an honesty born out of alcohol – that I couldn’t imagine a world without him.  He’s been gone five years now and in the intervening period I’ve had time to reflect on everything that, unknown to both of us then, lay ahead of dad and me.

My dad Arthur Kelly & his Second World War medals

He was a clever man.  Intellectually curious in a way that mum, with her skittish Irish temperament, could never be.  When I was very young he and I used to go on dusty bike rides through the Surrey lanes; and in the run up to the local horticultural show we’d hike up Box Hill to gather wild flowers, which I then had to name.  I still have, tucked in the pages of Keble Martin’s Concise British Flora, the green felt-tipped list that earned me first prize.

Dad gave me so many tangible things.  A love of France – he used to read a French novel a fortnight and joy, for him, was a very rare steak and a bottle of St Emilion, Premier Cru – a love of gardening and an ability to pick oneself up when things go wrong.   When I bombed in my history A level he coached me through my retake with reserves of patience, kindness and tact that my daughter can tell you I’ll never have.

But then, in the last decade of his life his health started to fail.  The writing was probably lightly fingered on the wall when my friend and I had our late-night conversation.

Dad suffered a series of minor strokes that rendered it impossible for him and mum to stay in the home where they’d lived for 30 years. They needed to sell, but mum – who with hindsight was already in the early stages of dementia – refused.

The traumatic story of how we had to trick her into leaving her beloved home and move into a more suitable flat I’ve already told here.  What I didn’t know then was that it marked the beginning of a role reversal between me and dad and, for me, a recalibration of our relationship.

Mum never made it to the new flat.  Her dementia, until then only occasionally hinted at, flared up at the shock of leaving her home and subsumed her overnight.  She was hospitalised for six weeks before moving into a nursing home.

Guilt weighed on us all.  It ate away at dad.  Alone for the first time in over half a century, he never quite adjusted.  As his health began to decline more rapidly, the focus of my life shifted towards his needs.  I was never his carer; we lived too far away and I had a young daughter.  Even had it been possible, I could never have done it.  I’m ashamed to say I simply didn’t have it in me.

Dad’s body may have been failing but his brain was still sharp and, though he visited mum every day, he was adamant that he wasn’t ready for a nursing home. So instead, I put in place a coterie of local helpers and when, a year or so later, dad suffered a major stroke, I employed a wonderful carer who lived with him until he died.

Martha was our saviour, and in many ways for the final three years of dad’s life she became closer to the frail old man he’d become than any of his family.

Naturally none of this help came free – and dad was also paying mum’s nursing home costs.  The capital he’d made through selling the family home soon dwindled to below the minimum required for social services help and I arranged to see a care manager.  She advised me that, given dad’s condition – he was now immobile, confined to bed, no longer able to speak properly or eat (he was fed by a tube in his stomach) – he would be eligible for something called NHS continuing healthcare.

I’d never heard of it.  Few have.  It’s a form of state funding eligible to people who are very ill and subject to a rigorous assessment procedure which, had it been properly applied, I would readily have accepted.  Sadly, in dad’s case (as in hundreds of others) the process proved inhumane and iniquitous.

My nine month struggle to secure these funds I’ve recounted before.  I fought a phone, letter and email war of attrition with the NHS, enlisting the help of dad’s local MP and his solicitor to ensure that dad could, as he wanted, remain in his own home.

I won the battle, but at a price I didn’t immediately appreciate.  I knew I was tired, worn out from my continuing battles with the NHS, constantly anxious about dad – not just his health but his rapidly diminishing bank account which meant that, unless we won the NHS funds, we’d soon have to sell his flat to pay for his care and put him in a nursing home.

I was exhausted, unable to go away for even a night or two (never mind abroad) without worrying that the next text or phone call might bring bad news.  Many a call from Martha sent my heart racing only for me to discover that it related to a washing machine repair.

But the unknowing, never-ending fear took a greater toll.  For with it came resentment.  A word that dared not speak its name until a counsellor elicited it from me.

It was my husband who suggested – when I’d blown my top once too often for something petty – that I might need to talk things over with someone professional.  He said he thought I was becoming very angry.    Angry – me?  I wasn’t angry!

But secretly, on the quiet, I often listen to my husband.  And when I’d cooled down the following day I made a few enquiries and was astonished to discover that St Catherine’s hospice in Crawley, to which dad was now linked for his palliative care, offered counselling for relatives.

The weekly sessions proved invaluable and there was one that I will never forget.  By the time it occurred I had been seeing my counsellor for several months.  She usually said very little, merely a word here, a prompt there, as I babbled on.

A few days before this particular session I’d heard that we had finally – miraculously – won the NHS funds to enable dad to remain in his flat.   I should have been elated.  My husband and siblings were full of congratulations but I felt strangely flat.

I told my counsellor the good news and my unexpected reaction to it.  For the first time since I’d been going to see her she started to talk.  She said that my response was perfectly understandable.  “They’ve conceded, you see, this enemy you’ve been fighting on behalf of your dad. They’ve finally admitted you’re right and your father is very ill – that he’s at death’s door.  They’ve told you what you do and do not want to hear”.

I may have paraphrased, but that was the gist.  I was conflicted.  I was fighting, not just the NHS, but my own emotional battles.   There was even a name for it: anticipatory grief.  I did and didn’t want my dad to die.   Saddened, traumatised even, by seeing the man who’d once been my hero – who’d served at the Siege of Tobruk, who’d taught me to swim and read and write, to whom I owed my education and virtually everything I’d ever achieved in my life – relegated to lying in bed, watching TV, a giant pair of earphones plonked over his cavernous skull, was too much for me.  I wanted him to go.  I also – and this was the difficult bit – wanted my life back.

As we talked all this over my counsellor gently teased out of me the unspoken fact that I had begun to resent my father’s lingering death.  His insistence on staying in his own flat had placed a heavy burden of responsibility on me.  Dad – my dear old dad who just a few years before I couldn’t contemplate a world without – was slowly dying before my eyes, and it was making my life hell.

Grief is often described as a wave.  As I took in the implications of what we were saying, I collapsed.  I quite literally fell off my chair as if I’d been struck by a tsunami.  Tears flooded out of me and I sobbed.  I could hear my own wails.  It was an unstoppable surge of emotion that I’ve never felt before or since.  Finally, drained, shaking, I pulled myself back onto my chair and wiped my face with the tissues I was being offered.   And then, being English, I immediately apologised.

Dad died a few months later.  I felt grief, of course, and I cried a little.  But at his funeral my overriding emotion was one of relief that this wonderful man was at peace.  I still find visiting his grave, where mum is now buried with him, profoundly comforting in ways I could never have foreseen.

Watching someone you love die slowly is very difficult.  I know that now.  And I know the complex, competing emotions that wrestle within you as it happens.  The counsellor was a quiet, understated woman about whom I know nothing more than her wisdom, and that she shared it with me when I needed it most.  For which I shall always be immeasurably grateful.

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The Power of Stories

Scrolling through my Twitter feed (as you do) I came across Gina Shaw.  I didn’t know anything about her but I opened a link and there she was, telling her story.

untitledVery powerful it was too.  Gina, sitting in what looks like her living room, tells us that she’s 61, lives in Liverpool with her husband and two children, was once a children’s nurse, and loves singing and going to gigs.  As she talks – fluently, with confidence – the camera pans onto photos of her younger self, in nurse’s uniform and cap, and we begin to get a sense of who she is.

Of course we know what’s coming.  We know because Gina’s clip appears on the Alzheimer’s Society website; she is the face of the latest Dementia Friends campaign.  When this softly spoken woman pauses for a moment too long we know what she’s about to say and we can see, without her explaining (as she does) that a year after being diagnosed with dementia she’s still getting used to it.

No sooner does Gina start to tell us about her symptoms than she can’t remember a word she needs.  What it means to have dementia is being played out in front of our eyes.  When Gina falters over telling us the hardest thing she’s had to do, I falter with her.  I imagine telling my daughter Emily that I have dementia.

It’s easy to be sceptical about Dementia Friends.  A Government-inspired initiative, they’re often dismissed as no more than a cost-free gimmick, dispensing badges rather than meaningful action.

But Gina’s story touched me as few do (and facts and figures certainly wouldn’t) – because she was telling it, living it, drawing me into her world.   A world that’s been shaken to its core.  As soon as the video clip finished I signed up for a local Dementia Friends session.

Naïve – moi?  I don’t think so.  I’m an old cynic – a journalist remember, and the wrong side of 50 to be anything else.   I’m aware that the Alzheimer’s Society, or its PR department, or David Cameron’s Government (if you want to take it all the way) had hooked me through the power of Gina’s story.  The point is their method worked.  Besides, if the hour-long Dementia Friends course is truly awful, I’ll report back and call the whole episode a piece of journalistic research.

The fact is that stories, as Ed Woodcock says, “make you believe”.  We store a story in an emotional way, processing it as a belief, not a fact, and as a result it is a very potent thing.  Advertising agencies are well aware of this which is why the best adverts play on emotions.  Think John Lewis at Christmas time.

Ed is strategy director at Aesop, a branding agency that believes, like me, in the power of stories.  On the day I signed up to Dementia Friends, Ed told an audience of healthcare professionals that in addition to its plot, every classical story has a hero on a mission (or journey), some  trouble or conflict and a moral or meaning.  I couldn’t help but think of Gina, the reserves of strength she’s having to summon and the journey she’s embarking on.

If Gina’s story gets us talking about dementia, if it starts us thinking about the way we treat those who happen to have it even as we’re being told that there’s a one in three chance that one day that will be us, and if it gets us arguing the toss on the pros and cons of Dementia Friends, that – in itself – is a good thing in my book.  It raises the subject of dementia and in so doing helps, if only a little, to dissolve lingering stigma, while perhaps, hopefully, informing people about this misunderstood condition.

Kate Swaffer, another of my heroes (or heroines) was diagnosed with younger onset frontal temporal dementia aged 48.  She writes a searingly honest blog about living with it, charting her journey and providing, through choice words and pithy phrases, an insight into not just dementia, but life itself.  She humanises her dementia and I suspect that were her story to be played out as a pantomime we’d all be booing the villainous Mr Dementia while applauding to the rafters our leading lady.

Without wishing to get too heavy (which I have a feeling that Kate would hate), she’s lending us all a sort of moral compass.  She’s showing us, through her life and writing, how it should be done.   What exactly “it” is, is up to us.

Kate Granger has incurable cancer.   The film that she and her husband Chris have made to raise awareness of Dying Matters week this week (promoting public awareness of dying, death and bereavement) is extraordinary in its strength and truth.

Kate is a registrar in geriatric medicine.   She is familiar with death, but not – until now – as a patient.  Her film conveys a medical expert’s informed, darkly humorous, reflective perspective on a journey with cancer.  Her story is at once open and communicative – she tweets prodigiously and launched the successful #hellomynameis campaign to encourage medical staff to introduce themselves when treating patients – and very private.

The bond between Kate and her husband Chris is tangible and there is something unbearably tender about the way he always seems to have an arm around her in the film as if to protect her.   He can’t save her from cancer, the baddie in her particular story, but he can – and I’ve no doubt he will – ensure that her wishes are followed when the time comes.

When Beth Britton was 12 her father developed vascular dementia.  His condition dominated her teens and twenties, changing the course of her life as she made his care and wellbeing her priority.

Beth’s story is so compelling – it is unique in my experience for someone so young to dedicate her life to a parent – and her abilities as a communicator so skilled that she has become one of the country’s foremost campaigners for improving the lives and treatment of those with dementia.  During last December’s G8 Dementia Summit Beth attended a roundtable discussion with the Prime Minister no less.

Her journey may have taken her to No. 10 but everything Beth does is underpinned by, and returns back to, her own history.  As she says, “Everything my father went through, and that we experienced as his family, is there to inform, educate and influence others”.

Each of these remarkable women tells her personal account in her own way.  It is perhaps as much the manner in which they relate them as the content that stirs things up.   Beth Britton began her campaigning career with thoughtfully composed D4Dementia blogs that caught the eye of some influential people.  Gina Shaw and Kate Granger’s films spoke to me with a quiet yet potent emotion.  While my virtual Aussie friend Kate Swaffer just keeps popping up from down under, disrupting my Blighty routines with her inimitable “Swaffertime” courage and wit.

These stories won’t all have happy endings.  But the telling and retelling of them – their dissemination through films, Twitter, blogs, newspapers, magazines, TV and radio programmes ensure that they provide the means to positive ends.

As for my Dementia Friends training, whether or not it comes up to scratch remains to be seen, and written about, and hopefully read.  Take it as my contribution to the unfolding saga of 21st century dementia and how we can all help those unlucky enough to find themselves at the centre of its plot to live as well as they possibly can.

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Nana forgets, so I remember

intergenerationalI’ve been delighted by recent reports of German day centres that take different generations, from older people to toddlers.  The idea isn’t merely practical – logical in many ways – it warms the cockles of my heart.  There’s something just so right about it.

As I’ve grown older and particularly since becoming a parent 16 years ago I’ve been struck by this country’s segregation of the generations.  Though we no longer (at least not in my circles) expect children to be seen, not heard, we do tend to keep them very separate from adults.  Don’t get me wrong, I’m a great advocate of “grown-up time” but do we need quite so much of the “them and us”?

A French friend of mine finds it inexplicable that we Brits tend to feed our children not only at different times from us but with different food.  Why, she asks, would you give your little ones tinned spaghetti hoops then sit down a couple of hours later to eat grilled chicken breasts with green beans?   She certainly has a point.

When I was in my teens my family often holidayed in France. The highlight of our stay was always the local fête, where my friend Hilary and I sashayed past les jeunes hommes in the cobbled square while mum and dad sat at tables under the looming statue of General Leclerc, sipping Pernod.   This would never have happened in Dorking, where I wouldn’t have been seen dead out with my parents on a Saturday night.

Now it seems the Germans have a thing or two to teach us about intergenerational living.  They have created centres where older people and children mix, to the advantage of both.   These “multigenerational houses” are, as the UK’s Institute for Public Policy Research (IPPR) says, “recreating some of the extended family ties that people just don’t have as much anymore”.

The mothers’ centre in Salzgitter provided the first German role model in 2006.  The idea, pioneered by the then (incidentally female) family minister was to bring together under one roof, groups that had previously operated in isolation from each other – childcare groups, youth centres, mothers’ clubs, advice centres and communities for the elderly.

These multi-tasking houses were designed to offer an alternative for older people, who often feel lonely, and for young families who need support but have no grandparents living nearby.  How familiar that sounds.

Here in the UK we are regularly presented with headlines warning us of our “epidemic of loneliness” or telling us that “loneliness is killing us”.  Only recently an American report revealed that lonely elderly people are nearly twice as likely to die prematurely as those not suffering from feelings of isolation.

In Germany, the 2006 Salzgitter model was followed, in 2012, by second stage multi-generation houses, with funding for 450 centres.  The financial support was part of the German government’s demography strategy, under which nearly all administrative districts have their own such houses.

Compare this with last year’s depressing report from the House of Lords which found that the UK was “woefully unprepared” for the social and economic challenges presented by its aging population.

“Our society is in denial of the inevitability of ageing,” Baroness Sally Greengross, chief executive of the International Longevity Centre UK, said when the report was published.  “We have put off difficult decisions for far too long”.

Germany’s example seems a good one to follow.   Its “public living rooms” are regarded as important new concepts in a modern welfare state where conventional institutional help is combined with a more actively engaged society.

They provide more than this though.   As Dr Eckart von Hirschhausen, author, moderator and patron of the multi-generation house in Berlin’s Zehlendorf district, says, “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!”

Here in the UK the IPPR has called for “universal community centres” in which activities for different age groups would take place separately but under one roof.

Clare McNeil, senior research fellow at the IPPR says that the idea shouldn’t be too costly (the German government subsidises each of its homes by about £33,000 a year) and could be achieved by bringing existing services together in Sure Start centres or community halls.

The whole thing seems eminently sensible, with many inbuilt mutual benefits.  Generations mix, the elderly provide a helping hand with childcare services even as the children themselves enhance older people’s lives.

And they certainly do.   This morning’s Daily Mail carries the uplifting story of a woman with Parkinson’s disease whose 19-month-old grandson lights up her life.  Dawn May looks after Luca two days a week: “At the crack of dawn every Wednesday, I wake to the very best sound in world: my grandson’s delighted little chuckle bursting from the baby monitor on my bedside table.”

Sixty-two-year-old Dawn says they mostly potter about together – reading, climbing the stairs, building towers and knocking them down – and when she’s finished her grandmotherly duties she arrives home “exhausted and elated”.

She concludes by saying, “I thought my Parkinson’s diagnosis heralded the end of all life worth living – instead, thanks to the arrival of Luca, I am more aware than ever of its infinite possibilities”.

Ten-year-old Annie Donaghy has become something of a YouTube sensation after speaking at a fundraiser in York about her grandma who developed Alzheimer’s at 58.

In front of an audience of 800 Annie describes how her nana is still nana – how she still looks the same, still dances to the radio, ice-skates backwards and lets her watch TV programmes no matter “how dreadful” they are.

Her description is a pithy exposition of how to regard someone with dementia – seeing nana the individual first, not just her condition, recognising what she can do, not what she can’t, helping when necessary.  In Annie’s words, “Nana forgets, so I remember”.

It’s a slogan of which any advertising agency would be proud and sums up what youngsters, with their fresh, unself-conscious, non-judgmental take on life have to offer us adults, particularly the elderly and those with dementia.

There’s definitely a time and a place for children, but perhaps we should start mixing it a bit more, follow Germany’s lead and broaden our thinking about when and where that is.    As Annie says, “Grown-ups don’t always understand the important stuff”.

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Quartet: over-sweet but precious too

Tom Courtenay & Dame Maggie Smith in Quartet

Tom Courtenay & Dame Maggie Smith in Quartet

Over the Easter holidays current husband and I passed a rainy afternoon watching Quartet, the 2012 film about a colourful if not always harmonious group of residents living in a retirement home for professional musicians.

Despite its stella cast – Dame Maggie Smith, Sir Michael Gambon, Sir Tom Courtenay, Billy Connolly, the list goes on – and the heart-warming prospect of lost love rekindled over the zimmers, the movie doesn’t quite work.

Originally written as a play, its premise – of old age bringing infirmity but also (and only just in Dame Maggie’s case) a maturity of emotional understanding and a growing sense of what’s important in life – is promising but its characters are overdone.  Pauline Collins plays Cissy who has what Wikipedia calls in a euphemistic triumph, a “delicate senile condition”.   In fact, the ludicrous description is spot on, and therein lies the problem.

Still pretty, and charming and whimsical, Cissy is forgetful, obsessed with her voluminous handbag and impossible not to love.   She is the bearer of happiness, flitting about the retirement home – so stunningly beautiful that it wouldn’t look out of place in a Condé Naste Traveller magazine –sprinkling her magic like a sort of septuagenarian Tinkerbell with a benevolent streak.   If this were dementia, we’d all want a bit of it.

But setting aside the saccharine portrayal of one of today’s cruellest conditions and the idea of a retirement home with rooms twice the size of most OAPs’ bungalows, Quartet is still that rarest, most precious of things: a film of oldies, about oldies – or, as Emily calls them (or us), “the olds”.

quacoverAs such it’s good to watch and ponder on, once the criticism’s out of the way – and in doing so, one huge positive struck me amid the overblown flourishes.  What a good idea it is to have a retirement (or care) home for like-minded people.  It makes such sense.

The only other times in life we spend large chunks of time with those of the same or similar age are school and college, not always enjoyable periods for everyone.  But at least we’re all working towards a common end: our education.  We share likes and dislikes of teachers and subjects and peers; these things connect us and give us topics to talk about and bond over (or bitch about).

Perhaps one reason why the perception of care homes can be so negative – “repositories for our elderly”, places hidden away behind tall hedges on the outskirts of town – lies in the arbitrary hotchpotch of people who end up there.  There’s no reason, no purpose, behind the homes other than to contain the olds.

The enviable residents of Beecham House in Quartet all share a love of music.  They reminisce about past performances, they form ensembles and choirs; in singing, in playing their instruments, they keep their brains active, their fingers and vocal cords supple and their social skills sharp.  Of course, their former profession being what it is and this being a movie, they make heavenly music to accompany lingering shots of the croquet lawn.  But you get my drift.

And in a serendipitous quirk of fate, on the very day I was toying with ideas for this week’s blog along comes an expert in geriatric health to make my point for me.

Laura Bale, director of care services at the Royal Hospital Chelsea, home of the Chelsea Pensioners, has declared that the elderly should be surrounded by like-minded people in their twilight years.  She admitted she would probably be criticised for failing to champion diversity but said she had seen the benefits of her elderly residents sharing much in common.   At the risk of being shot down with Laura, I must say I can see her point.

She says the ex-servicemen gee each other along, urging others to get out and take a stroll or get dressed promptly on days when they are feeling low – doing so in the firm, military manner they all know and respond to.  “I would have to say it is sometimes more effective than when the staff try,” she adds wryly.

Another such home from home, this time for retired actors and entertainers, is Brinsworth House in Twickenham, affectionately known as “The Old Pro’s Paradise”, which has 34 places.   Though not quite in the Beecham House league of hospitality, it is good enough for the likes of Lord (Richard) Attenborough who lives there with his wife Sheila Sim.   Past residents have included Dame Thora Hird, Alan “Fluff” Freeman and Charlie Drake.

Just as Beecham House had its music rooms and platforms for performing, Brinsworth House has a stage, theatrical posters and an imposing board bearing the names of “The Noble Six Hundred”, the suitably dramatic title for those whose donations enabled its creation in 1911.  (It is now mainly funded through the proceeds of the Royal Variety Performance show).

I was also gratified to learn that my childhood town of Dorking in Surrey has a nursing home with 20 places for former journalists and their dependants.  Pickering House, funded by the Journalists’ Charity, was opened in 2007 and, along with a gym, a hairdresser and a chapel, has the two facilities crucial to any reporter worth her salt: a library and a bar.

This week has also seen the publication of a new report by the Institute for Public Policy Research (IPPR) stating that the number of older people needing care in England will outstrip the number of family members able to provide it by 2017.   In which case the demand for care homes will surely increase, no matter what the Government or anyone else says about the advantages of OAPs remaining in their own homes.

While Beecham House remains a celluloid utopia – and all the profession-based care homes I’ve mentioned are financed mostly or entirely through charitable fund-raising rather than being state-run – it is always worth looking at what works and importing best practice, where possible.

So perhaps my rainy afternoon in front of the goggle box wasn’t wasted after all.  And though Pickering House may not run to a croquet lawn, if I end up there at least I know I’ll be guaranteed a good read, a drink in the bar and – who knows? – perhaps even a couple of leads for a possible story.

 

 

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My Mum

A few days ago Kate Swaffer wrote a post entitled “Big life, small suitcase” about the potent symbolism of packing someone’s entire existence into a modest piece of luggage.

Describing how she brought her late friend’s belongings back to the UK, Kate said, “As I lifted the small suitcase at the airport for weighing and loading for the trip, the fragility of life struck me, and the visual of an actual suitcase, full of a very big life was overwhelmingly sad”.   Reading her words I felt a rush of emotion, and I’m sure I wasn’t the only one.

Mum as a young woman

Mum as a young woman

For me Kate’s writing, clear and incisive as ever, brought back memories from 15 months ago when, in the final moments of Christmas Day I walked out of my mum’s nursing home room carrying a battered overnight bag containing all that was left of her possessions.  All that was left of her.

I’d missed her passing by a handful of minutes.  Hurrying along the corridor I was stopped by the night-time carer (a stranger, this was the festive season remember) who stepped out of her room and said, quite simply, “She’s gone.” Two words that knocked the stuffing out of me even though I’d been expecting them – even, dare I say it, wanting them – for well over two years.

She was a long time going my poor old mum.  Ninety when she finally shuffled off this mortal coil, she hadn’t really been with us for a decade.  Dementia stole her, almost indiscernibly at first and then with more force as it began to erode not just her brain but her body.

When I held her in my arms that Christmas night she was tiny; no more than a raggedy scarecrow of skin and bones, but still my mum.  In fact, after all that the wretched combination of brain atrophy, vascular dementia and Alzheimer’s disease had done to her, she was, in many ways, more my mum in those weighted, precious moments of grief and loss than she had been for a very long time.

A miner’s daughter from Derbyshire, my mother was bright but largely uneducated.  She was outspoken and big-hearted, with auburn hair and a penchant for flower arranging and expensive clothes that my siblings and I marvelled at.  It was only when the true poverty of her upbringing began to emerge as dementia stripped away her pride that we realised that our mum’s appreciation for the finer things in life must have come from her early years in service to the Duke of Newcastle under Lyne.

What a journey she travelled.  From the mining village of Cresswell to the leafy lanes of Surrey where, while working in Clandon for the Earl of Lincoln, she happened to meet a young Guildford lad not long back from the war.

She and dad went on to have three children of which I was the last – an accident or, if I was in good favour, an afterthought.  Their driving principle was to equip us, in the form of education, with a passport for getting on in life.  In this they succeeded.  We all went to university and bettered our lot.  We have all travelled some distance, if not quite as far as mum.

Which brings me back to the suitcase.  Its contents didn’t reflect her life but how much it had dwindled: a handful of photographs and cards that had adorned her room and a CD player-cum-radio that provided the soundtrack of her final years.  Confined to bed and nighties, she’d long since stopped wearing clothes, while her few personal bits and pieces, including all her jewellery, were already scattered among us children.

I knew, and kept reassuring myself, as I drove back to London in the bleak early hours of Boxing Day, that the pathetic little suitcase of objects didn’t reflect mum’s life at all.  And it didn’t.  Her four score years and ten had been fuller, happier and – until those last miserable years – luckier than most.  Yet the holdall seemed nonetheless symbolic.

It reminded me of the overnight bag that I’d taken into hospital when I’d given birth 15 years earlier, to Emily.  I knew, just like every other expectant mum, that when I made my journey home my world would have tilted on its axis and everything – from my relationship with my husband to the everyday creaks and gurgles inside our house (not to mention my own exhausted body) – would be different.

Driving through the deserted streets that Christmas night my head was full of similar disorienting thoughts.  Mum had gone – really, finally, physically gone – and, at 52, I was an orphan.   The order of things, as I’d always known them, had just been radically altered.

The imagery of roads travelled, of life’s pathways and crossroads, is rich and well mined.  It works.  But the suitcase – or backpack or bag – the accoutrement of every traveller, though visually potent is possibly misleading.

I tucked away my mum’s small case in a rarely used room of our house for a good two weeks before I could bear to open it again and sort through its contents.  They smelt, not of mum – my mum, lover of Nina Ricci’s L’Air du Temps and Je Reviens by Worth – but of the nursing home. A mixture of soap and air freshener and something else I’d never been quite sure of and didn’t want to find out.   In other words, the suitcase of belongings wasn’t mum at all.

0118348f67ab85f088e3ba57e85ee12a1ae3e927f1Mum was the woman who used to tell me how she sat in the window of her bungalow, glowing with the unspoken secret of me growing inside her as she watched her neighbours walking their children to school, knowing that soon she too would have another baby.

She always called me her baby, even when she started living in her nursing home and I was well into my forties.  Imagine the pathos – the life in a word – in that.

She was the one who loved Dean Martin and Frank Sinatra, who favoured men’s watches and the colour green, who – in her younger, carefree days – danced around the kitchen with a tea cosy on her head.  Half-Irish, she could talk the hind leg off a donkey. She wanted to learn but never quite had the concentration to finish the numerous and varied courses – Italian, German, literary criticism – upon which she was constantly embarking.

Mum – at her best – was gregarious, generous and warm.   She could also be sharp and impatient and sometimes unfairly critical.  Until dementia took hold she was never boring.  Or staid.  Or predictable.

Everyone’s life is a journey being made, a story in the process of being told.  Behind every face, hidden in the lines, the twinkle of the eyes, the twitch of a cheek, the turn of a lip, lie the kilometres travelled, the ups and downs, the treacherous sands, the smoothly paved ways.

Now that over a year separates me from mum’s passing I like to look at the photographs propped on my desk.  Of her at 18, with her arched eyebrows (Emily’s eyebrows), her peachy skin and her soft mouth; of her at about the same age as I am now, smiling at me with, somewhat disconcertingly, my grey-blue eyes.   Two snapshots in time.  Two moments in a long and fulfilled life that saw mum travel a heck of a way.

No.  A suitcase could never contain my mum – any more than she could ever decide what to pack.

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Where Memories Go

9781444751789Where 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. http://www.playlistforlife.org.uk/

Where Memories Go is published by Two Roads Books.

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Cheers! Why Twitter Matters

In last week’s blog I described Twitter as a fabulous global cocktail party, which was later – in a gratifying example of just the sort of exchange I was promoting – nominated by one of my tweeps (or followers) as her quote of the week.

Of course, as I said then, it’s better than an authentic cocktail party because of the surreal wealth of diverse and expert people you encounter (or not).  2011-11-18_17_34_47_cocktails8Twitter’s other great advantage over real life is that the choice of who to bump into is always yours.

But aside from my colourful portrayal of this modern form of communication and its social benefits, Twitter and other online mediums for exchanging ideas have huge implications for society as a whole.

A major interest of my blog lies in dementia in all its many and varied aspects.  In the relatively short time I’ve been on Twitter I’ve met scores of people whose knowledge and personal experience of this cruel condition are far greater than mine.  Among them are a fair few inspirational individuals living with it.

For want of a better name I call this group the dementia community and like all communities, the individuals within it, including me, fare better through being its members. They gain strength not merely from their numbers, or from troubles and ideas shared – in themselves powerful forces for good.  Working together, these people – young and old, with and without dementia, experts and laypeople (like me) – gain influence.   It doesn’t come overnight, this growing sense of power, but slowly and incrementally.

This was brought home to me through a recent blog by Gill Phillips, whose innovative “Whose Shoes?” approach to social and health care are truly person-centred.  Gill’s method of working puts customers (from local authorities to health organisations to universities and colleges) in touch with each other so that they can produce and share tips and ideas – together.    The concept of “walking in each other’s shoes” allows one group of individuals to explore the concerns, challenges and opportunities faced by another.

Gill’s blog , followed by over 7,300 people, was about an event in Cumbria designed to improve medics’ understanding of their patients, which she helped to facilitate and which was attended by a number of senior NHS clinicians.   Using very few of her own words, Gill created a blog consisting almost entirely of tweets (and occasional images) of the event from before, during and after it, capturing its positivity, revealing how ideas – on topics including leadership, culture, data use and patient empowerment – build on each other to produce a zinging, creative buzz.

Here’s a snatch to give you a flavour:

HTMC@htmc0: We should talk about patient feedback rather than patient complaints #PatientCare

Karen Maskell @GleefulKaz: @htmc0 @WhoseShoes totally agree change the language and change the conversation!

Farhan Amin @patientmemoirs: @WhoseShoes @GleefulKaz @htmc0 Treat Pts as adults have conversation, share opinion, learn from them to improve their care is my moto

hellomynameis Paul @pauljebb1: @amirhannan #patientcare great real example of how to empower patients with access to GP records, giving real eg of treating pt in Dubai

HelloMyNameIs Jenn @spanx73: I could listento @DrUmeshPrabhu all day, great passion, great enthusiasm, great patient centred focus #patientcare totally agree @pauljebb1.

The tweets seem to rise to a crescendo of enthusiasm and show why Gill is right to be such a fan of the social media’s ability to bring together people with the same values and passions who wouldn’t otherwise have made contact.   I did a quick head count of the twitter handles mentioned in her blog: 45.  These included attendees and non-attendees, clinicians, private individuals and organisations such as the Cumbria Partnership NHS Foundation Trust (@CPFTNHS), as well as luminaries such as David Nicholson, days before he stepped down as Chief Executive of the NHS, NHS England’s Chief Nursing Officer Jane Cummings who has over 11,000 followers on her Twitter account – and a delightful Twitter novice called Julia.

In addition to the names mentioned there are hashtags to follow and retweets and favourites.  One event hundreds of miles away in Cumbria, of which I’d never have been aware had it not been for Twitter, was brought home to me (quite literally, in the privacy of my study) with as much colour and immediacy as if I’d been watching an Alan Bennett play from the front row of the National Theatre.

And – as the discerning reader may have spotted – this blog wasn’t even about “my” subject. Dementia wasn’t mentioned.  But Gill Phillips has a keen interest in dementia and was instrumental in the creation of the #dementiachallengers hashtag that built on the Government’s Dementia Challenge launched in 2012.   It was through this hashtag that I “met” her.

Fittingly – and typically for such a Twitterphile – Gill’s explanation of how #dementiachallengers came about is told in tweets in another of her blogs.   Here are some snippets:

“I hosted DAILY blog series re different perspectives on #dementia. The first time I mentioned #dementiachallengers http://whoseshoes.wordpress.com/2012/07/23/round-up-of-in-my-shoes-dementia-awareness-week-8 …

“Fast forward >> Yay! #dementiachallengers “on my radar” @clarehorton @GdnSocialCare http://whoseshoes.wordpress.com/2012/08/03/in-my-shoes-because-its-been-an-exciting-week/ …

“Anger among #dementiachallengers as @nursemaiden‘s Dad refused #CHC funding shortly before he died: http://whoseshoes.wordpress.com/2012/08/20/round-up-of-in-my-shoes-dementia-awareness-week-10 … #rayissunshine

That last tweet piqued my interest as I know a bit about continuing healthcare or #CHC, a contentious form of NHS funding designed for those who are very ill “with a primary health need”.  It is very difficult to procure even for anyone, such as my late father, who was palpably eligible.  Writing about my struggles to obtain it for him resulted in one of my first pieces of elderly care journalism: http://www.telegraph.co.uk/health/elderhealth/7386805/My-father-saved-all-his-life-but-was-failed-by-the-NHS.html.

So, like Venn diagrams – like communities the world over – the different circles of like-minded individuals who have come together to exchange ideas, offer support and gain comfort and strength from one another, overlap.

Researching this blog I have made scores of new virtual contacts.  And unlike newspaper articles which famously become no more than fish and chip wrapping the day after they’re published, what appears online stays online.   A phrase often – and rightly – used as a warning for naïve Internet users, this turns into a golden opportunity for those of us keen to advance causes close to our heart.  Nuggets of information relating to our particular spheres of interest exist online, like undiscovered treasures on the seabed, waiting to be found.

Tweets can point us in the right direction; hashtags and communities are vital.  Without them the Twittersphere is simply too vast a place in which to find what we’re looking for.

I feel as though, having arrived at the cocktail party rather late (story of my life) I’m busy playing catch up with innovators such as Gill.   Still, I’m more than happy to follow in her very large virtual footsteps and if ever we meet I promise I’ll buy her a #properdrink.

 

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Open All Hours

The giant vending machine (Image from youtube)

The giant vending machine (Image from youtube)

As one door closes, another opens.  I kept this hopeful saying in mind when pondering recent reports that a giant vending machine has replaced a village shop.  I wasn’t thinking so much of the plastic swing door at the bottom of the automated shop, or even the tinkling bell alerting Granville of a customer’s entry into his establishment in “Open All Hours”, but of the metaphorical significance of the phrase.  So, as your eyes adjust to the rather gloomy hallway of this blog, just keep thinking of the sunlit doorway that’s coming up.

I’m afraid the idea of the vending machine – however big, however prettified with red bricks and stripy awning, and however quaintly (if misleadingly) called Clifton Village Stores – fills me with unease.  It’s undoubtedly useful, as the residents of the Derbyshire village where it’s been installed were quick to say.  I suppose it could be called the 21st century equivalent of the village shop, a high-tech convenience store.

Except it’s not a shop, or a store (despite its name); it’s a faceless machine.  And there’s the rub.

Hardly a day goes by without news of the challenges – of health, loneliness and isolation –faced by our growing population of pensioners.   There’s a national drive towards “dementia-friendly communities” to counteract some of the stresses and fears of the increasing numbers of us living with this pernicious condition.  In light of all this, the notion of an auto-shop, while welcome for many, strikes the wrong note with me.

Scores of sub-post offices, both rural and urban, closed their doors for the final time a few years ago; ticket machines at railway stations and cinemas are gradually replacing people sitting behind counters.  It’s quicker and more economical, and suits our busy lives.

Don’t get me wrong: I’m not against automation.  And I’m not averse to the new vending machine per se, which obviously provides a valuable service.  However, it’s a telling image of the tensions between the different strands of our complex modern world.

As soon as I saw pictures of the rows of numbered provisions and the cashpoint style method of payment I imagined how this “store” would seem to anyone with mild cognitive impairment, striving to remain independent.  How would he or she cope faced with such a battery of automated choices and no one to turn to for help?

344124_759ad64bAuthentic village shops, the ones with people rather than buttons, are more than idealised versions of motherhood and apple pie. They’re places where all sorts – rich, poor, young, old, fit and infirm – congregate as they queue at the counter and browse the shelves.  Think of the numerous scenes played out in Ambridge’s very own shop – and the way the fictional villagers of The Archers joined forces in 2010 to keep it going on a voluntary basis when it was threatened with closure.   The shop (along with the Bull and its endless pints of Shires, and St Stephen’s church) lies at the heart of the community.   It’s where everyone meets for a chat (or a snipe at the outlandish Lynda Snell).

So you get my drift.  A giant vending machine is no replacement for human contact, a friendly word or a helping hand.  It may be better than nothing, but it can’t begin to compare with the real thing if you’re old or infirm.

And yet, as I’ve been discovering recently, there is one ultra-modern – even post-modern (whatever that means) – high-tech community that really works even though it involves no physical interaction, no face-to-face meetings.

This sunlit portal is of course 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 wellbeing pay the price.

Long-term and terminal conditions can be isolating, both for those they afflict and those looking after them.  A few months ago Health Secretary Jeremy Hunt described the fact that 800,000 OAPs were chronically lonely as a source of “national shame” and said that loneliness was a problem “that in our busy lives we have utterly failed to confront as a society”.

A giant vending machine despatching goods fast and efficiently at any time of the day or night without recourse to any human interaction makes Mr Hunt’s last point rather too well.

On the other hand, social networks such as Facebook, Twitter and blogging allow individuals on opposite sides of the world to communicate with each other at a time of their choosing.  I’ve chatted with several people on Twitter I now consider friends although I’ve never met them.  Of course 140 characters is limiting, but it focuses the mind and if two tweeters want to communicate at greater length, one of them can direct message (or DM) the other secure in the knowledge that no one else can see the correspondence, and then ask for an email address and extend the conversation.

I view Twitter as a fabulous global cocktail party.  Anyone and everyone (and everyone who’s anyone) is almost certainly there, somewhere.  You just have to find them in whichever corner of the Twittersphere they’re hanging out.  The sheer diversity is very much part of the fun.  My Twitter feed hops from world news to toddlers to dementia to fracking to a greeting card folder who dreams of owning a chicken sanctuary.   If variety is the spice of life, I’m tweeting on.

But if, for me, Twitter and blogging broaden my horizons and widen my circle of friends and informative contacts, for others who can’t, or daren’t, set foot outside their door, social media networks provide a wealth of supportive and comforting voices.  The online community can be famously bitchy.  Less talked about is the companionship and empathy it can provide – at any time of the day or night.

The giant vending machine may be the ultimate convenience, if not a store.  It may be open 24/7, 365 days a year.   But even this high-tech wonder of the Peak District isn’t of use to someone in Australia.  Twitter is.

Blinking in the sunlight, I have to admit that technological advances are mainly good.  But it still seems perverse that in a world where we’re encouraged to be “dementia friendly”, village shops – friendly and inviting to all – are being replaced by huge machines that are anything but.   The one place that I would urge OAPs and those living with the early stages of dementia to visit is that most modern of communities, the Internet.   It’s surprisingly friendly.  And open all hours.

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Perfect Moments

Bubble_Wallpaper_by_LethielEugene O’Kelly was the high-flying CEO of one of the world’s largest accountancy firms, with a packed diary for the next 18 months, a rock solid marriage and two loving daughters when, aged 53, he was told that he had inoperable brain cancer.

“I was blessed,” reads the opening sentence of the book he wrote after his diagnosis.  “I was told I had three months to live”.

It’s an extraordinary statement.  What he meant, he explains, is that knowing he had so little time left he came to realise the value of the present. The here and now.   He created what he called “Perfect Moments”, which he spent with people who were dear to him.

Though perfect, these moments were anything but extravagant or exotic; they were often everyday experiences such as strolling in the afternoon sun or rowing across a glassy lake.  What made them perfect was that time stood still, distractions ceased, emotions and senses were heightened as he shared precious minutes and hours with those he’d chosen to be with.

How often can any of us say that we have achieved such intensity of experience – truly lived for the moment, in the moment?   We do it when we are very young children, just out of babyhood and unaware of little more than our own self.  As adults we watch on, charmed at the sheer delight of a toddler blowing bubbles. On holiday, marvelling at the slow majesty of a perambulating elephant, we’re as likely to lower our eyes and reach for our camera to record the scene for later as stand still and take it all in, now.

When the actor Timothy West recently spoke of his wife Prunella Scales losing the ability to remember things very well because of mild 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”.

It struck me at the time that life aboard a narrow boat might be quite a good metaphor for living well with dementia.

Now a new report has come up with some innovative ideas to improve the lot of those with the condition.  One of the most controversial is the suggestion that in the process of helping them to live well, too much emphasis is being placed on memory, on things as they once were, instead of things as they are.  This flies in the face of conventional thinking which sees those with the condition being surrounded by objects and photographs from their past in an effort to make them feel happier and more secure.

The paper 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 Eugene O’Kelly tapped into in the last three months of his life to such great effect).   Kahneman suggests that we should all suppress our “remembering selves” a bit and focus more on the present.

The report, commissioned by Red and Yellow, an organisation providing dementia care, 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”.

Red and Yellow’s counter-intuitive approach to the importance of memories for those with dementia reflects the increasing focus on what people with the illness can do (live in the moment) rather than what they can’t (remember).

It also drills down, in an almost philosophical way, into what it means – for everyone whether or not they have dementia – to be happy and fulfilled.  In doing so it explores the complexities of happiness, how its attainment requires the contrast of highs and lows.  And from this goes on to ask how we can “overcome the determination to eliminate unhappiness from the lives of people with dementia”.

Stated baldly that last statement may seem odd.  But the intention behind it – to allow those with dementia to experience and express the same range of emotions as those without – is not only logical, but quite obviously right.

Running alongside the aim of enabling people with the condition to lead as fulfilled and normal a life as possible is the desire to let them take risks – an integral part of everyday existence – while of course ensuring that they are safe.

This was well illustrated at the report’s launch by a story recounted by the journalist and broadcaster Sally Magnusson, whose mother Mamie had dementia.

When Mamie’s condition was fairly advanced she was asked to give a tribute at a friend’s funeral.   Sally described writing the speech for her mother, who was adamant she wanted to give it and how, despite the family’s worries about what might go wrong, Mamie gave a wonderful performance.

But then, at the conclusion of her speech, Mamie – forgetting what she’d just done – simply turned over the paper and started all over again.  Sally sat rooted to the spot, heart thumping, riddled with guilt at placing her mother in such a vulnerable and embarrassing position, as Mamie gave the entire speech a second time, with as much gusto as the first.

When, finally, Mamie returned to her seat, the congregation erupted in spontaneous applause. “They did so,” explained Sally, “Because they knew and loved her.  She was in a community that understood her.

“This is how we need to function in a world with dementia.  We have to build that understanding in communities; she had a great time, the problem wasn’t hers, but mine”.

And so, having had our normal thinking on how to live well with dementia turned upside down by the suggestion that current beliefs are too memory-centred, having been pushed outside our comfort zone to consider increasing rather than reducing the risks and potential unhappiness faced by someone with dementia, we return to the familiar.  Dementia-friendly communities.

It’s a phrase that some consider too glib and sometimes hollow, but which defined properly is surely what we want.   A society where everyone – with or without illness – is able to live as well as they can.  Where to live with dementia is not to be coddled or patronised, or treated as gaga or stigmatised, but to be enabled and encouraged to live the life that is yours right now, this very moment, perfect or not.

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Please Read On

5457367049_8fb6a84f41_zA blood test that can detect early signs of dementia – good news, surely?   When I saw the recent reports I hoped it was, but knowing how these things work – and being a cynical cove – I wondered about the upbeat certainty of many of the headlines.

These are the facts.  Researchers from Georgetown University Medical Centre in America examined 525 healthy participants aged 70 and over and monitored them for five years.  Their research, published in the journal Nature Medicine, identified molecules in blood that could be used to predict with 90 per cent accuracy whether people will go on to develop mild cognitive impairment or Alzheimer’s.

I know a little about dementia.  My mum suffered (and I’m afraid in her case, that word is accurate) from three different forms of it in the last 10 years of her life, but I’m not a medic and have limited knowledge of the science of the condition.

The first worrying fact to jump out at me was the 90 per cent accuracy rate.  Even with my shaky maths I knew this meant that 10 per cent of those tested could get a false positive result – they could be told that they were going to develop the condition when they weren’t, or vice versa.

And of course, there is no cure for Alzheimer’s.  Medical screening for an incurable condition raises thorny ethical issues.

I decided to garner reactions to the news from those far better qualified than me, including several people now living with different dementias.

When she was 12, Beth Britton’s father developed vascular dementia, which he lived with for 19 years before passing away in 2012.  During that time Beth cared for him and since his death she has become one of the UK’s leading campaigners on the condition.

Her reaction to the blood test announcement was characteristically thoughtful.  First, she highlighted the confusion in many people’s minds between dementia and Alzheimer’s.

“Many people do not understand that Alzheimer’s is only one form of dementia. So anyone taking this test, should it ever come to market, will need to fully understand that even if it shows as negative for Alzheimer’s, that doesn’t mean that they won’t develop another form of dementia in the future”.

How clear, and true.   She goes on to describe a greater flaw in the patina of good news.  “Moreover, if the test cannot distinguish between Mild Cognitive Impairment and Alzheimer’s that is quite worrying. Mild Cognitive Impairment is not a form of dementia and may never lead to a form of dementia. This could be very misleading for patients”.

Having read the reports, Beth concluded that she wouldn’t take the blood test in its current form, or advise any of her family to do so.  Coming from someone with her knowledge of the subject and close personal connections to it, her carefully worded advice is not to be ignored.

But what of those currently living with dementia – would they be tempted to have such a test?

Chris Roberts is in his 50s and has Alzheimer’s.  He qualified his response to me with the words, “Sorry, I’m not very intellectual these days, my learning and memory are pretty basic”.  His comments were anything but – and showed exactly why the maxim “no decision about me without me” is so important.

Chris may not be completely au fait with the details of the proposed screening but he made the very valid point that an earlier understanding of unusual actions could help relationships, “and even save marriages”.   Chris knows the nitty-gritty of living with dementia – the stresses it places on everyday life.  “If nothing else, it (a test) would enable understanding and support could then be put into place”.

The word “inspirational” is overused.  In Kate Swaffer’s case, it’s spot on.   This 50-something woman lives in Australia, is intelligent and forthright.  Six years ago she was diagnosed with dementia.

Without knowing the details and limitations of the test, Kate said she’d possibly have had it and, had it shown she was at risk, she would have focused on her brain and body health.  As for medical announcements in general, she says she gets ticked off with them and believes nothing should be reported until human trials are in progress, while recognising that this may impact funding.

An academic expert in frontotemporal dementia, Shibley Rahman produced a forensic analysis of the week’s news in his blog, “The truth behind *that* blood test for Alzheimer’s”.  Some of his more complex arguments were beyond my grasp, but his overall message is clear.  We need to consider such reports with caution.

He questions, among other things, the reliability of the diagnoses of the different conditions that go on to cause dementia (a crucial aspect of the research) and, using expert citations, concludes that the wrong diagnosis is given in 20-30 per cent of cases.   So, for Shibley, the very basis of the research has a high rate of inaccuracy.

He explains that the blood tests are not routine ones, but “specialist assays” with subsequent and considerable cost implications.  And, like Beth Britton, he is worried by the misleading conflation of Alzheimer’s and Mild Cognitive Impairment – and by the often overlooked fact that there is not one dementia and therefore not one cure-all, but hundreds of varieties of the condition, each requiring different treatments (and diagnoses).

So, what has my very unscientific survey revealed?

First, that I was right to be wary of the story.  Journalism, it is said, is the first rough draft of history – and we would do well to remember that.

But I return to Chris Roberts, who has dementia.  At least they are trying, he said. “And any research is better than none, obviously”.   He may say his intellectual powers are not what they were, but to me he’s expressed the nub of the issue.

The fact that research into the various dementias is happening, being reported on so that it can be talked about, analysed, queried and criticised, by you and me, by Kate, Chris, Shibley and Beth, by journalists (medical and otherwise), in broadcast and print news, on Twitter and Facebook, is good.

All research, by its very nature, is a slow, incremental progression towards a stated end, with helpful advances and unhelpful setbacks along the way.  It is difficult to translate complex medical findings into the sort of easily understood language that newspapers rightly demand of their writers.  A daily publication full of precisely accurate but incomprehensible medical stories would soon fold through lack of readership.

By all accounts, the findings of the Georgetown team are a step in the right direction.  Whether that step is a stride, a stroll or a creep is another question, which (judging by my own little study) will be answered according to the amount of one’s prior understanding and knowledge of the subject.

So my message to you, for what it’s worth, is please read on – with care and caution.   And then discuss further.

 

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Bravo!

imagesOH2DXQHH“Basil!”  Anyone of a certain age will remember Sybil Fawlty’s voice imperiously summoning her gaff-prone hotelier husband in the ’70s sitcom, Fawlty Towers.   Prunella Scales seemed to inhabit the role of Sybil: organised, efficient, bossy.  She had to be with a husband as disastrous as hers.

Now we learn from her real life husband and fellow actor Timothy West that she has “a sort of mild Alzheimer’s”.   It’s brave of him to speak out given the stigma that still surrounds the condition.   Few other UK celebrities have done so in quite the same way.

John Bayley, husband of author Iris Murdoch, faced criticism when he published a memoir of his late wife that included descriptions of how Alzheimer’s had affected her.

It was assumed, but never quite stated, that Margaret Thatcher had some form of dementia in her final years.   The film “The Iron Lady” won Meryl Streep an Oscar for her portrayal of the late Prime Minister, including scenes showing her as a doolally old lady talking to a non-existent Denis.   The filmmakers didn’t consult the Thatchers’ children, Carol and Mark, about the cinematic depiction of their mother, who was still alive at the time, and there is no evidence to suggest that she spent her final years talking into space.

Dementia, even in the second decade of the 21st century, is still to some extent the condition that dare not speak its name.

It’s not just Prunella Scale’s and Timothy West’s decision to talk openly about how Alzheimer’s has impacted on their lives that is so welcome, it’s the way they speak of it.  In a joint interview with the Radio Times about a forthcoming TV series on the couple’s canal trips their language is couched in positive terms.

Though admitting that it’s painful to see his wife changing into “another person” Mr West also says that he notices how much she’s able to do and how much she enjoys life.  “Her sense of humour is still there and we have a lot of fun.  She’s just growing old in a certain area more quickly than either of us would like.”

According to Mr West, their slowly gliding trips could be made for someone in his wife’s position.  “You don’t have to remember things on the canal.  You can just enjoy things as they happen – so it’s perfect for her”.

As for 81-year-old Miss Scales, she says she’s determined not to let her condition stop her acting and wishes to die on stage during her eighth curtain call.

Dr Alison Cook of the Alzheimer’s Society said that the couple’s adventures on the canals show that it’s possible to “live well with dementia and plan to carry on enjoying life”.

Her words, and those of the actors, chime very well with the increasing desire and determination among those involved with the condition (including those living with it and their carers and doctors) to concentrate on the positive – to view the person first and then the condition; to ensure that people who have it are not defined by it and to see them for what they can do, not what they can’t.

No doubt Timothy West and Prunella Scales did some soul searching before deciding to speak out about her Alzheimer’s.    Actors alive to the power of language, on this occasion the words in which they told their very personal story were well chosen indeed.

*

As a postscript, journalist Sarah Vine has today (5 March) included a wonderful and touching vignette about the couple in her column in the Daily Mail (scroll down).  She tells of how, at last year’s Oldie Literary Festival, the pair read together on stage quite perfectly.

“But the most touching performance took place during rehearsals,” she says. “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, gently correcting her when she got in a muddle.

It was a humbling display of unshakeable marital love”.

 

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Conquering the Eiger

EigerTo Wengen, Switzerland, where CH and Emily skied and I walked in glittering snow among conifers laden with icy white blossom.  The views – of the Eiger, the Jungfrau and the Männlichen – were stunning and the air was nectar after the fumes of SW17.

As so often after a holiday, I came away with the burgeoning seeds of one or two ideas inspired by new encounters, experiences and sights.

After one lunch at 2,000m within the faded grandeur of Kleine Scheidegg’s Bellevue hotel, I dawdled in a corridor to look at sepia-tinted photos of mountaineers stretching back over decades.  I was struck – along with the whiff of bygone meals and cigarettes lingering in the carpets – by the imagery used in the captions.

The moustachioed men – and they were nearly all men – “fought” the north face of the Eiger, they “battled” it and “conquered” it.  The language of their climbs is that of war.   Read about mountains and they are brought alive and given fearsome personalities: they brood and tower, they dominate.  Above all, they exist to be overcome.

This is, of course, the vocabulary of long-term conditions and diseases such as cancer.   Those singled out by such misfortunes don’t ask to be victims or casualties.  They do not meekly submit to their illness, they are locked in a struggle; if they lose it, they are often said to have done so after a long and hard-fought battle.  The language used imbues them with a proud dignity: they are valiant warriors against the foe.    They certainly don’t lie down and give up in the face of adversity.

How different – I thought, as I studied the lists of those who’d fought the mountains and won (and those who’d lost) – is the language of dementia, about which I’ve written here before.  No one ever seems to “battle Alzheimer’s” or “lose their struggle with dementia after a brave fight”, though I have read a moving blog post by Kate Swaffer who talks of “fighting to accommodate the disabilities of dementia” – and how this fight to come across as “normal” tires her even as those around her (who don’t know the challenges she’s having to overcome) exclaim that nothing seems wrong.

Because the truth is: many people don’t submit to dementia any more than to cancer.  I asked one of my “virtual friends” who I’ve met through Twitter and who happens to have dementia how she manages to keep doing so very much so very well.  “I just paddle harder beneath the water,” she said.

Others play music, or sing, write poetry or blogs, or complete the crossword every day.   They “battle” not only their own condition but the ignorance and stigma surrounding it – through tiring and tireless campaigns and petitions and websites.  There is no cure for dementia but there are ways – proactive ways that don’t necessarily mean taking medication – to slow its advance.  These forms of “taking on” dementia are becoming more common and more talked about.  They are beginning to win out against their adversary.

Through guile and wit, through patience, energy and sheer determination, and with the unstinting support of friends and family, many people are living well with dementia – they are battling it and winning, at least for now.   And I salute them all.  In fact, dare I say it, I have far more respect for their courage against an enemy they didn’t seek out than for what might be seen as a rather reckless desire to climb the north face of the Eiger.

Over a beer one evening with a Kiwi guest at our charming, family-run Beausite hotel, the talk turned, as it so often does at my stage of life, to the care of elderly parents.  He told me that in New Zealand care homes for older folk are sometimes combined with maternity homes.  Think about it and it makes such sense.

New, and often anxious, mothers welcome the experience of those who’ve been through it all before.  And how better to lift the spirits of someone who’s not quite as sprightly in mind or limb as they were than to coo over a baby?  There’s a natural synergy between the two phases of life – it’s surely an idea worth exploring here in the UK.

 

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Happy Days

Recently a confluence of events has started me thinking.  Always dangerous but on this occasion, positive.

First up was some great news involving my daughter Emily.  Modesty, and the threat of being disowned as her mother, prevent me elucidating further; suffice to say, my current husband (I’ve been married before and like to keep this one on his toes) and I are both astounded and inordinately proud of our girl.   CH and I were, and remain, amazed that someone carrying our genes could be so talented and clever, but there we are.  That’s life.  And you’ll have to use your imagination to work out what it is Emily’s accomplished.  The upshot was, my Tuesday afternoon turned, in the blink of an eye, from wet and gloomy to heart-thumpingly glorious.

Second up, CH and I attended a wedding.  For the first time in several years.  Gone are the days of one a weekend.   Any minute now we’ll be off to celebrate the nuptuals of some friend’s child and I will have to admit that I am well and truly past it.   We dolled ourselves up and headed off to Tetbury’s imposing Georgian Gothic church of St Mary the Virgin and St Mary the Magdalene, with its original high-backed box pews and romantic, candlelit interior.

I’d forgotten the rustling expectation of a wedding congregation as it waits for the bride, the turning heads, the murmured whispers and sudden exclamations as old friends catch each other’s eye.  Weddings – big, bursting at the seams church weddings such as this one – brim with hope. Two lives on the verge of a vast expanse of something new.  The last three times I’d been to church were for funerals, one of them, my mum’s.   Each had provided its own solace, its tribute for a life well lived, its comforting rhythms, rituals and hymns.

But a marriage is different: in place of muted reflection is laughter, in place of a stiff whisky, a flute of fizzing champagne.   Weddings buzz with happiness, Jo Malone perfumes the air and optimism pervades it.  Only the stoniest of hearts could fail to be affected – an old softy like me was a goner.

The third event was altogether different: a trip to the Young Vic for Samuel Beckett’s “Happy Days”.   For anyone not familiar with this most Beckett of Beckett plays, its title is ironic.  The lights go up – fiercely and unrelentingly – on a middle-aged woman (that’ll be me again) buried up to her waist in sand.

There are as many interpretations of Happy Days as there are grains of sand on its stage beach but mine, taken three days after the wedding and a week after Emily’s very good news, was to see it as an honest if brutal examination of the human condition.   Winnie burbles away – it is, after all, all she can do – to her husband Willie, who is hidden behind a rock and rarely responds.  As well as being able to talk the hind leg off a donkey, Winnie possesses another very female attribute.   Her bag.   From it, throughout the play, she withdraws a toothbrush, a comb, a lipstick, a music-box, a nail-file, a bottle of medicine and, chillingly, a revolver, on which she bestows a compulsive kiss.

I was fascinated by these items.  Apart from the gun, which I saw as Winnie’s only true friend in that it offered her a means of escape, what did the others represent?   A woman’s life?  If so, how startlingly sad.  But despite her lot, Winnie refuses to be defeated.  Despite sinking ever further into the sands of time (by the second Act she is buried up to her chin) despite the scorching sun, despite the loud and jarring siren that announces the start and finish of each “day” (the sun never dims and there is no night), she prattles away, her words providing a veneer of brittle bonhomie to cover the pain of her circumstances.  Occasionally she sings a snatch of a song.  She is an eternally optimistic woman literally stuck in a rut, a “hopeful futilitarian” to coin Robert Brustein’s clever phrase.   Is she, in exaggerated form, merely every woman?   Good golly, it was all a bit deep and I left the theatre with plenty to think about – mainly, was I Winnie?

As if to rescue me from the terrifying bleakness of Beckett’s play and remind me of the joy that is Emily and the hope of the newlyweds, I had a dream.   Walking along our unremarkable London road of Victorian houses I looked up into a pale sky washed with rain and saw the foot of a rainbow planted at the T junction.  This part at least was true.  Rainbows are one of the few advantages of the storms battering us at the moment and a few weeks ago I stood and marvelled as one arced over our street before continuing on my way.  In my dream I ran towards the fluttering end of this huge arch of colours, reached up and pulled it down.  It had the coarse, heavy texture of a thick scarf and its wide, stripy tail was fraying.  I can still feel the fabric curled in my fingers and its strong force pulling on my shoulders.  I’d caught it!   Achieved the impossible.   Captured a rainbow.

Of course I immediately woke up.  But the sensation remained, reminding me of the extraordinary impossibility I’d held in my hands.

And this, surely, is life.  The thread of it, the rope of experiences, good and bad, high and low, hopeful and abject, that form our time on earth and make us who we are.  More and more, as I talk to and write of those facing fears, traumas, illness and hardship the like of which I’ve never known, I’m struck by their almost inhuman resilience.  It’s as if, forced to confront the worst, they savour the best.  A common refrain is, “I take each day as it comes” or “I live for each day”.   They teach me such a lot.  Under the searing glare of an unrelenting sun, Winnie still hopes.  She looks in the mirror and brushes her teeth, and when she can’t even do that, she sings.

Happy Days.

 

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Word Games?

imagesGER69BAWAs a journalist I’m wary of word counts and in the past I have been known to refer to “dementia sufferers” rather than “people living with dementia” because two words are always better than four in the world of the hack.

Now my use of language is being challenged.  Not by pedants (I’d easily see them off), but by others whose opinions are harder to dismiss.

Those living with dementia are finding their voice and starting to be heard, which is great, and overdue.

In the course of my writing I’ve recently spoken to several people with dementia.  There’s a natural selection process at work – it would be useless and inappropriate for the Alzheimer’s Society or Dementia UK to put up for interview anyone who is too confused or has lost the power of speech.

But as someone whose own mother had dementia for the last few years of her life, I have been delighted and humbled by the articulacy of those I’ve interviewed.  I immediately knew that to describe them as sufferers wouldn’t be right and I tried, from that moment, to avoid the term.

Of course, as ever with language, the issue runs much deeper than the words themselves.  The dementia community – those living with the condition, their carers, medics and other related professionals – are questioning not just the terminology used by wider society, but our attitudes.

How the rest of us describe those with dementia, how we talk about them, reflects how we think of them.   Already, by using the words “us” and “them”, I have erected a subtle verbal barrier that I don’t like, but what irks me isn’t the point here.

Not all people with dementia mind being described as sufferers, but articles are for public consumption and their authors need to be sensitive about what, and how, they write.

It’s no accident that our national dementia strategy, launched in 2009, is called, “Putting People First.  Living Well With Dementia”.   The phrase “Suffering Well With Dementia” would not have worked, which neatly illustrates the point that many are seeking to make.

Alzheimer’s Australia has produced a set of guidelines entitled “Dementia Friendly Language” advocating the use of certain words over others, including the now (for me) obvious “person with dementia” over “victim” or “demented person”.   It also suggests using “devastating” or “terrible” rather than “tragic” or “hopeless” and I wonder if such subjective differentiations are necessary or wise?

Certainly, if Alzheimer’s Australia is serious about using the right language, its latest public utterings seem unfortunate.  Announcing the next phase of its “Fight Dementia Campaign”, it talks of “Creating a Dementia Friendly Australia”.

As @dementia_2014 (aka Dr Shibley Rahman, author of the recently published and aptly titled “Living Well With Dementia”) tweeted, “Awful cognitive dissonance: a ‘fight’ to produce ‘dementia friendly communities’?”

These could be considered petty pedantic points.  Alzheimer’s Australia works for the good of those with dementia and surely it should be applauded, not criticised.

But therein lies the problem with prescriptive – some might say over-prescriptive – guidelines.  We tamper with the complexities of language at our peril.

“Dementia sufferers”, though not appropriate, is precise.  It seems the phrase “living with dementia”, though obvious in its meaning to me, is ambiguous.

A poem by Kate Swaffer entitled “Who’s ‘Living with Dementia’” is an elegantly wrought reflection on whether the phrase can also be used to describe those who, while not having the condition themselves, are living with and caring for someone who does.   Kate’s poem provides her answer in its last two lines: “If they are not diagnosed with dementia / They cannot be living with it”.

Her blog provoked a slew of comments that revealed, behind the carefully chosen words themselves, the tensions and emotions of being close to someone with dementia.  Every single one, I noticed, received a considered response from Kate, who is living with dementia.

I have always believed in the power of words.  They inform and sometimes confuse; they may be used as a warm and comforting blanket; they can strike hard and shock and wound.    They hold joy and danger.  Perhaps the debate itself – the very fact that we are having it; the thoughtful conversations and poems about which words to use when describing the many and varied complexities of dementia – matters more than the merits and flaws of its opposing parts.

 

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People Not Body Parts

As I’ve become more and more interested in the way those living with dementia are treated by both health care systems and society I’ve realised that, given we don’t yet have a cure, the best way forward is to encourage and enable everyone who has the disease to live as well as they possibly can.   The inspirational Kate Swaffer expressed it far more elegantly when in one of her recent blogs she urged anyone who (like her) has been diagnosed with dementia, to “reinvest in life”.

Now, hopefully, it seems that this positive, “person-centred” approach may be about to take root throughout the health service.   Secretary of State Jeremy Hunt has announced that NHS patients should be treated as people rather than body parts.   To me – no doubt to Kate Swaffer and countless others trying to make a difference, such as Dementia Friends and Dementia Champions here in the UK – this latest pronouncement  from on high seems self-evident.  But it is a sign that things are changing.  For the better.  At last.

By shifting focus from “a part of the body where things have gone wrong” to “a person with a name .. a person with a family”, Mr Hunt (and they are his words) has made the first step towards ensuring that the system itself, and the processes within it, must adapt.  In short, his proposed changes will ensure that the patient is at the centre of the health system, which will work around him or her, rather than vice versa.

It all seems so obvious.  But then, it often takes time for the obvious to become the norm within monolithic organisations such as the health service.  “Person-centred” dementia care was initiated in this country over 20 years ago by Professor Tom Kitwood.  He treated people with the illness as individuals, referring  to their “personhood” to reinforce the fact that they still experienced emotions. He also introduced “dementia care mapping”, another method currently gaining traction, which involves monitoring care from a patient’s perspective to see what triggers behavioural changes – what makes him or her happy, aggressive or sad – and then using this knowledge to help lessen agitation and confusion.  Two decades on, Kitwood’s methods are being  used to reduce the amount of anti-psychotic drugs being taken by those with dementia.

In December, to coincide with the G8 Dementia Summit, I looked into how its members are tackling the disease.  I discovered that France is one of the leaders , having launched its first dementia strategy in 2001, some eight years before us.  It is now onto its third and – guess what? – its latest (2008) plan shifts the emphasis from a health focus towards seeing the patient as an individual, with a resultant reduction in the use of anti-psychotic drugs, sometimes to zero.

Recently, through Twitter and writing articles, I’ve come to know scores of people involved with dementia in various ways – some are living with it, some are carers (family or otherwise), some are Admiral Nurses, some medics, some academics, some writers, and many (if not most) combine several different roles.   Everyone I’ve encountered within this “dementia community” is passionate in their desire for those who have it to be seen as people rather than to be defined by it.  Again, this seems pretty straightforward.

But the truth is that for many not touched by this pernicious disease, the stigma remains (as it does around many mental conditions).   People are frightened of it – in recent years surveys have shown that over-55s worry more about developing dementia than cancer.   Fear leads others to turn away, to avoid facing up to what they don’t understand and don’t want to know, and so ignorance remains.

Slowly but surely this unhelpful, negative attitude is changing.   Those with dementia, and their carers, are starting to speak out – to show that they are very much more than their disease.  And social media is accelerating the conversation, allowing people living and working on opposite sides of the world to share their thoughts.

Since being diagnosed with dementia six years ago when he was just 50, Norman McNamara or “Norms” of Torquay has surely done more than anyone else to change public perception of the disease with his pioneering “dementia friendly communities” and purple angel badges that shops and businesses can display to show their support.

The dementia community is gaining strength and, all importantly, the respect it  deserves.  Governments around the world are starting to take note.  People like Norms here in the UK and Kate in Australia have voices that are powerful; their warm personalities, enviable energy and fierce determination shine through their broadcasts, blogs and writings – oh, and by the way, they have dementia.

 

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Hello!

Pippa KellySo, here I am.  Finally.  Writing my blog.   I suppose it was inevitable really, given that I love writing and it’s what I’ve done, in various guises, throughout my career.  I can also be pretty determined (others call it bolshie) when I put my mind to it.  And I don’t like injustice.  So when I thought that the NHS wasn’t treating dad fairly in his old age I got mad, embarked on a mission to set things right for him, then wrote about it in a national paper and went on Radio 4 to tell everyone about it.  (That’s another thing I love to do. Talk.)

I’d never have put myself down as someone who’d end up campaigning on behalf of the elderly or champion their right to better care.  But then I never thought I’d put mum in a nursing home.  When her dementia became so bad that my siblings and I feared not only for her but for our frail old dad, we were forced – like thousands of families up and down the country – to make that difficult decision.  And I wrote about that too.

My pieces struck a chord with readers.  I began to concentrate on writing about OAPs and funding their care, to research more about it, to meet experts in the field, to attend conferences.  I pretty soon realised that headlines warning of the “ticking time bomb” of financing old people’s care, the “looming epidemic” of dementia, the “silver tsunami” of our aging population, were all too true.  But they were sometimes simplistic, or generalised and impersonal.  Few of them drilled down into the everyday nitty-gritty of those living with dementia – and almost all were negative.

I wrote about 62-year-old Joyce, who described the discovery that her forgetfulness was down to Alzheimer’s as “a gift”.  She didn’t mean the illness of course, but the diagnosis.  She wasn’t alone in her positive attitude.  Many of the family carers I’ve met have been inspirational.  Faced with a demanding career, a young son and a mum whose dementia had progressed too far for her to live alone, Clare took an extraordinary step: she took the three of them travelling the world for a year.  They went to Australia, Indonesia and America.  “I only managed to lose mum and Tom once and not together – so I thought we did rather well.”  For once I was lost for words, silent in my admiration of this woman’s verve.

My articles on the elderly led me into other, related areas such as palliative care and the under-sung work of Admiral Nurses who focus their attention on the families of those with dementia.  I delved into controversial topics such as the Liverpool Care Pathway and end of life plans, of which I’ve had experience and am very much in favour.  Where abuses occur, it is they that should be eradicated, not the compassionate plans themselves.  I discovered wonderful people such as “Soul Midwives”, who offer companionship and comfort – a listening ear and the soft touch of a hand – to those coming to the very end of their life.

The stories I hear and write about show me just how lucky I am, they put life in perspective, they humble me.   Many of the experiences I share, though often personal, are also universal.  At the top of my website I describe myself as a writer, a campaigner, a mum.   I’m also a wife and, having vowed never to own a dog, indeed *whisper it softly* having never even liked dogs, I’m now the owner of Bert, a cockapoo who rules our household and, being exceptionally clever (not), tweets from his own account @DownDogBert.   Many different aspects of my life make me what I am and will no doubt feature in my blog.  Until I came to write this I’d forgotten where the word even came from.  It’s the shorthand version of a log (or diary) that’s posted on the world wide web.  A web-log.  A Blog.

Welcome to mine.

 

 

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