Reframing Dementia

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Turtle Song

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“What you’ve given Chris is unbelievable”.

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

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

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

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

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

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

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