• In this bonus episode I talk to Jorg Roth who, in My Life Films, has created something very special for people with dementia and their families.  As with all the best ideas, it’s simple yet effective. Jorg has come to dementia not as a carer or medic, or a professional from the social care world, but as a successful film maker with a wealth of experience. 

    He’s a creative with a commercial approach to dementia. But don’t switch off at the sound of what he himself calls the “C word”. Commercialism, he says, can be good. My guest knows that if people with dementia don’t rate, like and use his product, it won’t fly. For him, the user experience is king.  And the users of his product, his customers and consumers, are those living with the condition. As they might put it: nothing about us without us. 

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

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

    The finished film is premiered in the presence of its star and their family and friends. The impact on all involved is extraordinary and very moving. Some of you may remember my podcast with Mike Parish whose partner of 45 years, Tom Hughes, has dementia. Mike commissioned a My Life Film for Tom and says that every time Tom watches it he’s transfixed. “The personalised music captures his attention in a way that TV burbling in the background wouldn’t,” says Mike. “And it’s a treasure forever.”  

    A My Life Film bring families together, gives friends an understanding of dementia they might never have had, and is now impressing the medical profession. A recent study at St George’s NHS Mental Health Trust in London concluded that My Life Films can lessen the behavioural and psychological symptoms of those with dementia and improve their quality of life, as well as enhancing relationships between carers and those they care for and reducing medication. Another evaluation by Hampshire County Council revealed the same beneficial consequences. What not to like?

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

    You can find My Life Films and My Life TV at mylifefilms.org

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  • This week’s guests are three highly creative, very successful men who are on a mission to help those with dementia lead happier, easier, more fulfilled lives. 

    Their latest collaboration is a colourful one with a powerful past that stretches back to the 18th century when trades unions were illegal and women’s votes were a long way off. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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  • For the past 12 years, since her mum was diagnosed with, first mild cognitive impairment and then Alzheimer’s, Rosanne Corcoran has been her main carer, and in 2015 her mum moved in with her and her family. For Rosanne is also a wife and a mother to two daughters. Before she had to give it up, her career was in real estate. For this week’s podcast she spoke to me from her home, three and a half thousand miles away, in Philadelphia, USA.  

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

    For months now Rosanne has barely left the house; when she does she hurries home for fear of bringing the virus back with her. She doesn’t think her 92-year-old mum Rose, who needs help with all her everyday needs, would survive were she to catch it. 

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

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

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

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

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  • George Coxon is the owner and director of two small care homes in Devon. Pottles Court, which has to have the best care home name EVER, and Summercourt, both of which live by the philosophy of homely homes for life. When my guest and I talked he told me, in no uncertain terms, that people who come to live in Pottles Court and Summercourt do just that: they arrive and move in. They’re not admitted, a word more suited to hospitals. How very refreshing.  

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

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

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

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

    Two weeks after everyone living there had been vaccinated, the virus struck Pottles Court. The 17 people who live there were confined to their bedrooms for 14 days. “It was really grim,” George says. “When they wanted to get on the move we had to usher them back into their rooms. It was very difficult”.   In the end, they lost four residents, all in their 90s.

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

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

    Teamwork, collaboration, the sharing of best practice among different sectors of health and care, and leading by example lie at the heart of what George Coxon does. Not forgetting fun, of course.

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

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  • Costa-award-winning author Keggie Carew and I chat about her dad and his dementia, about the twists and turns of family life, about forgiveness and about that strange, intangible thing called love. All themes that are skilfully woven into Dadland as its mesmerising narrative flits about in time. 

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

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

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

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

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

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

    His son John, my guest in this episode, says that when his dad was living with dementia he used to drive from Doncaster to visit him with knots in his stomach.  “I felt sick. It was a living nightmare to see such a lovely man disappear in such a brutal way.”  Many of us know exactly what he means.

    Norbert Peter Stiles was born in Collyhurst a working class suburb of Manchester. The son of an undertaker and a machinist, he followed Manchester United, played for England Schoolboys at the age of 15 and, in 1959, fulfilled his childhood dream and joined his beloved team as an apprentice.  He debuted for his country against Scotland at Wembley in April 1965 – his aggressive ball-winning technique didn’t please everyone. “I got slaughtered in the papers, absolutely slaughtered,” Nobby said, but he never let the criticism put him off. 

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

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

    But in 2002 Nobby suffered a heart attack and a year later, aged 61, he began to show signs of what was later to be diagnosed as a mixture of vascular and Alzheimer’s dementia. As his health worsened so too did his finances and he was forced to sell his World Cup winner’s medal and other memorabilia.

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

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

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

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

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  • Peter Berry and Deb Bunt met by chance – through the spin of the wheel one might say – in Sax Velo, a cycling shop in Suffolk in 2018. Deb (together with husband Martin) had recently retired and moved to the market town of Saxmundham. Peter, a Suffolk man through and through, took over his father’s timber business; for him the trees and woods of his county are as familiar as old friends and family. Peter is also a keen cyclist and, aged just 50, he was diagnosed with dementia.  

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

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

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

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

    While, in his inimitable way, Peter tells her that while the condition’s taken so much from him – his income, his self-esteem, his future, he has taken a lot from it. “I live every day; I enjoy every day even if I might forget it moments later. They say you only live once, but that’s rubbish: you only die once. You live every day. And that’s what I fully intend to do”.  

    Slow Puncture: Living Well With Dementia by Peter Berry and Deb Bunt is available from Amazon.  Advice and support for people living with early onset dementia and can be found at www.youngdementiauk.org

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

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

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

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

    The first was a brush with death when a burst appendix left her unconscious for nine hours in A & E, followed by a four-day stint in intensive care. Four weeks later her dad called to say that her mum, Mary, had been diagnosed with Alzheimer’s disease.  Sarah describes this as one of the worst days of her life.

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

    Over the next decade, as Mary’s dementia progressed, a newfound bond developed between them. “We learnt a new, more grown-up confidence with one another”, says Sarah. “And learnt how to laugh at our shortcomings”. Sarah and her siblings supported their parents as best they could but their father struggled to cope and in 2000 Mary moved into a care home. 

    Sarah soon realised that while kindly and well-meaning, the staff had little or no communication training – and her frustration developed into a passion to try to help carers provide better care. Over the course of the next few years, as her dad died and her mum was forced to move care homes, twice, Sarah’s knowledge of dementia grew and with it a belief that staff couldn’t hope to develop a relationship with their charges if they didn’t know anything about them, and in order to find out about them they needed to be able to communicate with them. Sarah decided to act. 

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

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

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

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

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

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

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

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

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

    “I was struck by the power of that myth,” Mike says. “When the two halves meet there is an unspoken understanding of one another, they’re unified and know no greater joy. This was what we both felt when we met, and still do”.  I can see it when I watch the pair of them and hear it as Mike speaks of Tom.

    Just four years ago, in 2016, the two men married. Strange, almost unbelievable to think, that when they first moved in together in 1975, aged 20, they were living illegally. Eight years earlier their very sexuality, their gayness, was deemed a criminal offence. 

    In 2015 Tom was diagnosed with HIV-associated neurocognitive disorder, or HAND, a very rare form of dementia. Soon afterwards Mike gave up his job with the fire brigade to care for him, experiencing what he describes as a tsunami of shock and grief.  

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

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

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  • My guest this week is the chief executive of the Alzheimer’s Society, Kate Lee. 

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

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

    It was only on my second viewing of the shaky film that I realised that the daughter was in fact Kate Lee.  

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

    She knew that it was vital to come up with a contingency plan ASAP. Since April, when it was feared that the society might lose half its voluntary income, she’s had to furlough 400 staff, lost about 320 colleagues through redundancy and and taken out £12 million of expenditure. In doing so, the projected loss has been almost halved, from £40m to just over £22m and, importantly, the society hasn’t had to renegue on any current research funding. 

    We talked a lot about her own family’s story, about the challenges of being both the daughter of someone living with dementia and the CEO of the UK’s biggest, most influential organisation in the dementia sector, about the realities of the condition (which aren’t always quite as they’re portrayed in the movies), about the tricky role of a close relative who lives some distance from his or her loved one and isn’t a primary carer but wants to help.  And of course we talked about how the Alzheimer’s Society has responded to the coronavirus pandemic, particularly the vexed issue of care home visiting, and her vision for the organisation’s post-Covid future.


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

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

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

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

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

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

    Which is why John’s Campaign asked the Government to review the guidance around care homes. Family carers, say Nicci and her fellow campaigners, are not visitors but vital to the health and selfhood of people with dementia, and should be recognised as such, and given the same protection, testing and status as key workers.

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

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  • Dr Jennifer Bute regards the dementia with which she was diagnosed in 2009 not as a life-shattering disaster but a gift – to use her words, “a glorious opportunity”. She is a remarkable individual who, despite facing many adversities, and supported by her strong Christian Faith, remains brimming with hope and gratitude.  

    It is a sign of her fortitude and determination that she was the first woman in Hampshire to become a Fellow of the Royal College of General Practitioners – and this when she was already beginning to display symptoms of Alzheimer’s disease. 

    She says that her condition has enriched her life because she now knows the condition, not just as a professional, or as a relative (her father also lived with dementia) but from the inside. In 2018 her book, Dementia From The Inside, A Doctor’s Personal Journey of Hope, was published and is available from Amazon in paperback and Kindle https://www.amazon.co.uk/Dementia-Inside-doctors-personal-journey/dp/0281080690/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=&sr=. 

    Her website http://www.gloriousopportunity.org/ contains a myriad of resources, including information on the fascinating Japanese Memory Groups that she runs at the dementia-inclusive retirement village where she lives in Somerset. Dr Bute also has a Facebook page, again called Glorious Opportunityhttps://www.facebook.com/gloriousopportunity.

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

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

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

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

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

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

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  • Jenni Dutton’s Dementia Darnings comprise a series of large works formed with running stitch that explore the effect of the condition on both her mother and herself. Jenni says the Darnings became the constant thread binding her life together and stopping it from falling apart. “How will I unpick my life from my mum’s life?”, she asks as the years pass. 

    The Somerset-based, multi-media artist wanted to evoke the sense of disjointedness and abstraction, of displacement and insecurity that her mum’s dementia aroused in her – and she has certainly succeeded. 

    “There is a fascination with the very gradual, slow process of building the layers of threads until they become closely interwoven; I’m working at ways to describe the harshness of dementia, exposing the loss associated with the condition, the unravelling of the personality and eventual emptiness,” she writes in her diary.

    The Darnings have been exhibited throughout the UK, in Dublin, the Hague and China, with plans to show them in the United States and Australia in 2022. Jenni tells me that people’s reaction to them has been extraordinary and continues to move her. 

    You can see these on Jenni’s website 


    and on Instagram at Jenni Dutton 9342 


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  • I couldn’t have hoped for a more wonderful guest to launch my second series of Well I Know Now than the international star of stage, screen and television, Glenda Jackson. The actress has added a BAFTA to her glittering array of awards (two Oscars, two BAFTAs, one Tony, one Golden Globe, two Emmys …. ) for her portrayal of Maud in the BBC film of Elizabeth is Missing. 

    This intriguing whodunnit, based on the excellent novel by Emma Healey which I reviewed here https://pippakelly.co.uk/2014/08/elizabeth-is-missing/) also provides a deft exploration of dementia and the strains that it places on family life. Glenda plays Maud who, while in the early stages of dementia, sets out to find her missing friend Elizabeth and in so doing solves a 70-year-old murder mystery.

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

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

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

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  • For my series finale I chat to Sally Magnusson, distinguished broadcaster, journalist, author and founder of the music and dementia charity Playlist for Life.  When her mother Mamie Baird developed the condition Sally started writing about her in an attempt to hold onto the wonderful woman she loved so much. The result is a tender letter from a daughter to a mother. It is also a reporter’s investigation into one of the most feared conditions of our time. 

    In Where Memories Go, Sally explores dementia, and what it does to an individual, through the eyes and heart of a loved one, through the theories of neuroscientists and quantum physicists, through the beliefs of theologians, and the words of poets and philosophers. Her investigations reveal that music is the one thing dementia cannot destroy. Which is why, up until the final stages of her life, when Mamie is lying in bed little more than “a breathing cadaver” she still whispers the words of a song. “For you and me, for us and we/All the clouds have rolled away”.  And why, after her mother’s death, Sally went on to found the highly regarded and successful Playlist for Life.

    Her book is about that most slippery of concepts, the self. And about society’s morally questionable view and treatment of those in danger of losing this most precious, intangible thing to dementia.  As her mother nears her end, Sally muses on her unconquerable soul, her indestructible identity. “You are Mamie, the only one there has been or ever will be. You are you”.

    Playlist for Life can be found at playlistforlife.org.uk and Sally’s latest novel, The Ninth Child, published by John Murray, is out now and available on Amazon.

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  • When her husband Geoff went to live in a care home several years after he developed dementia Zoe Harris soon realised that his lack of verbal communication was not only impacting on his quality of life but severely compromising his health. Because Geoff couldn’t tell his carers that he liked his coffee black they made it white, he didn’t drink it and in the space of two days became dangerously dehydrated. 

    Never one to sit and moan, Zoe took matters into her own hands. Nothing radical. She just jotted down Geoff’s preferences on post-it notes and stuck them round his room, thus ensuring that all his carers – even new ones or holiday replacements – couldn’t fail to see them, read them and act on them.  

    This simple personalisation process proved so effective that very soon the care home manager asked Zoe if she could replicate the system for other residents. And from these humble beginnings grew Zoe’s various award-winning enterprises – all designed to ensure that people with communication difficulties (whether because of dementia or other conditions) can convey their wishes. 

    Zoe went on to found first carechartsuk.co.uk, then mycarematters.org and myfuturecare.org

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  • When her own life hit a rough patch and she was brought very low, actor, writer and television producer Susanna Howard quite literally wrote her way out of it. She let her words flow onto paper, never letting her pen stop and not allowing herself to think too much. 

    The results surprised her. “I was reconnecting to myself,” she says.  Realising she was onto something, she decided to share the idea and help others who, like her, had found themselves in a dark place, for whatever reason. Susanna believes, wonderfully, that “If you believe in people they can achieve anything.” 

    From a pilot project in the elderly care unit of Guys and St Thomas’s in 2006 her work has grown into the charity Living Words. Now Susanna and her team of trained artists run three month long care home residencies, working one to one with people in the late stages of dementia who would normally be considered unable to communicate, carefully and skilfully enabling them to do so through their own words. 

    The charity’s work has been showcased at prestigious venues throughout the world and in 2014 Living Words published its first anthology of words and poems of people experiencing dementia. Called “The Things Between Us”, it was acclaimed by no less a person than former poet laureate Sir Andrew Motion. Last year Susanna was named on The Independent’s Happy List celebrating the 50 most inspirational people in the UK, whose kindness, ingenuity and bravery have made Britain a better place to live. 

    This week’s podcast is played out with Funny Old World, lyrics by John Offen who is living with advanced dementia and Susanna Howard, founder of the Living Words charity. John's words were set to the music of Marit Rokeberg and sung by London Contemporary Voices. 

    You can find out more about Living Words (and listen to Funny Old World) on their Facebook page:https://www.facebook.com/livingwords.org.uk

    Their website is: http://livingwords.org.uk/

    And more support for those with dementia and their families can be found athttps://www.alzheimers.org.uk/

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