Well I Know Now with Pippa Kelly

Suzy Webster is very special. She's a mother, daughter, wife, and for many years carer to her mum, Barbara. In 2012, after Barbara developed dementia, she and Suzy's dad, Gordon, came to live with Suzy and her family in Chepstow. When I first met Suzy over a decade ago, I was struck by her quiet determination, her love for her family and her wonderful way with words. I can still remember her telling a conference that her parents had moved in with her and her family so that they could have “the dementia adventure together”. So simply put. Yet behind the phrase lay the endless reserves of love and courage that those of us who have followed Suzy and her mum's story have witnessed over the years. This is Suzy's third appearance on Well I Know Now and there is a sadness to this episode and a reason why Suzy is joining me once again. For late in 2022, having weathered the dangerous and turbulent years of the pandemic, Barbara died aged 75. Her death has, inevitably, left a massive void in her daughter's life.“Who am I now? What do we do without her? I began to grieve more than one mum; I missed holding her hand – as a little girl on the school run, as my go-to person in my young adult life, and her warmth as the constant presence in our lives as her dementia progressed,” Suzy told me. Adding, “Does that make sense?”It absolutely does, Suzy. And I'm sure it will resonate with many listeners. The death of a mother, a mum, touches places deep inside us, exposing emotions we didn't even know existed – at least that's what I found, and I'm pretty sure I'm not alone. In fact, whenever I talk to Suzy I know that I'm with someone who really understands, who knows what I went through with my mum, and I think this is why Suzy has proved such a popular guest. Others feel this too.Suzy and I are here today to talk about her loss, but also her future, her hopes and plans as she enters a new chapter of her life. Hosted on Acast. See acast.com/privacy for more information.

Kitty Norton describes herself as a former “just about everything – from non-profits arts administrator to cabaret performer to post-production professional to crappiest daughter of the year award-winner for more than forty years”. She forfeited that last accolade when, six years after her mum was diagnosed with vascular dementia, and following the sudden death of her dad, she gave up her job with NBC in Los Angeles to move back to Oregon so that she and her sister could provide their mum with the best possible dementia care. To get her through this unplanned turn in her career, Kitty started a blog called Stumped Town Dementia. The blog brought her a temporary escape from dementia as well as countless virtual caregiver friends from all over the world who supported her with their understanding comments, emails and Zoom dates. When her mum died in 2021, Kitty decided she wanted to meet the virtual friends who had become so very important to her as she cared for her mum and, in her words, “Sit out on a summer's night, open a couple of bottles of wine, and find healing in the camaraderie of a fellow dementia caregiver”. She then went and did just that. The result is an incredible 90 minute film charting the 75 hundred miles and 27 states that Kitty covered in 26 days. Wine, Women and Dementia has already been garlanded with awards. It's produced by some serious professionals and features caregivers Kitty encountered through her blog, including former Well I Know Now guest and host of Daughterhood, the Podcast, Rosanne Corcoran. Like Stumped Town Dementia, Wine, Women and Dementia pulls no punches. Its protagonists, the caregivers, are strong, articulate women with fire (and possibly the odd drop of rose or Californian white) in their belly. It's a rollicking, funny, sad, informative, supportive must-watch for all family caregivers, for policy makers and anyone remotely interested in dementia – or perhaps, simply for everyone. You can find information on when Kitty's film will be available here in the UK at the website https://www.winewomenanddementia.com/ and you can find her blog at https://www.stumpedtowndementia.com/Wine, Women and Dementia will be available online in support of Dementia Action Week, May 13-19. Registration is free or, if you are able to support the film's continued outreach to family carers, a donation would be very welcome. Hosted on Acast. See acast.com/privacy for more information.

This episode is dedicated to Tony Husband, who appeared on my show not once, but twice – which, in itself, is testament to the man's generosity of spirit and dedication to raising awareness of dementia. After Tony and I had recorded our first podcast, I said that, for me, Tony was all about creativity, humour and love, and I'd stand by that. “Life,” Tony once said, “is about laughing”. For the prolific cartoonist, that was absolutely true. He used his dark humour to investigate life's paradoxes and frustrations, making the complex business of living seem simple. Through a few carefully chosen lines, Tony summoned up the most profound human experiences, including what it means to live with dementia. And, when his own dad succumbed to vascular dementia in 2011, he brought his considerable skills to bear on this most cruel of diseases. One night, after his dad's death, Tony began to talk to him in his studio as if he were still there, asking Ron what it had been like to live with the condition. He recorded the conversation in cartoons on A4 paper which were later turned into his book, Take Care Son – the last words his dad ever spoke to him. Tony's was a phenomenal talent and he used it to its full and to the very end. He died on his way to a leaving lunch at Private Eye, the satirical magazine for which he drew his famous Yobs strip for 37 years. I think Tony would have enjoyed the irony in this and definitely made a cartoon out of it. With me to talk about Tony, his kindness, compassion, wisdom and wit, is dementia campaigner and founder of Exeter's Dementia Action Alliance, Gina Awad. Gina knew Tony far better than I did; she collaborated with him for many years on different dementia projects including the Shining a Light on Dementia calendars and the book, United: Caring for Our Loved Ones Living with Dementia. Tony's friend, the poet and broadcaster Ian McMillan has also contributed, as has Tony's son Paul, and I will leave the last word to Paul: "My dad made people who are struggling start smiling again, and I'm proud of him".Tony and Gina's book, United: Caring for Our Loved Ones Living with Dementia is available on Amazon. Hosted on Acast. See acast.com/privacy for more information.

Wendy Mitchell is quite simply one of the most impressive people I have ever met. Diagnosed with Alzheimer's disease nine years ago at the age of 58, after an initial slump into depression, Wendy has since devoted her time and precious energy to raising awareness of dementia, frequently appearing on our broadcast media – she's a familiar face on the Breakfast Time sofas – and speaking at major conferences. Wendy's blog, Which Me Am I Today remains one of my favourite reads and, in writing it, she's created her own paper memory, something that has enabled her to produce two Sunday Times best-selling books about dementia, Somebody I Used to Know and What I Wish People Knew About Dementia – both written in collaboration with journalist Anna Wharton. This summer, Wendy's third book, One Last Thing, was published to great acclaim. As with all Wendy's writings, it comes from the heart and is honest, insightful and highly readable. Which, given its subject matter, is no mean feat. For One Last Thing deals with that most feared of subjects: death and dying. Though, as Wendy says herself, since her dementia diagnosis, she doesn't fear anything anymore, including death. In her book Wendy turns her mind to the serious matter of her future – which, as it does for all of us, involves her death – in order that she may fully appreciate living now. She explores this knotty, difficult topic through conversations with different people, including friends living with dementia and experts in various aspects of end of life, such as the legal practicalities and medical choices here in the UK.Often, she turns the spotlight onto herself: “As dementia dilutes my personhood,” she writes, “I cling to those things that make me who I am – a mum, a blogger, a walker and a photographer. For me, once those parts of me have been taken by this cruel disease, I'll have lost my personhood and would prefer death to an existence of snapshots of joy, as the time spent in confusion would far outnumber those moments”. Useful contacts:Wendy's blog can be found at https://whichmeamitoday.wordpress.com/ and her latest book, One Last Thing, How to Live With The End In Mind, published by Bloomsbury, is available on AmazonDiscover more about advance care planning advocate Clare Fuller and her services at https://speakforme.co.uk/My Future Care Handbook, an interactive book that helps people plan for later life: https://myfuturecare.org/ Hosted on Acast. See acast.com/privacy for more information.

My two guests this week are passionate about improving life for people living with dementia, particularly through the education and training of those who support and care for them. Dr Keith Oliver is an expert by experience – 13 years' experience, having been diagnosed with Alzheimer's in 2010, aged just 55 and forced to retire after 33 years in teaching, latterly as a headteacher. Prof Claire Surr, Professor of Dementia Studies and Director of the Centre for Dementia Research at Leeds Beckett University, has attracted global recognition for her research and leadership in dementia education and training for the health and social care workforce. Dr Oliver's roles and work within the dementia sector are almost too many to mention, but here's a flavour, starting with the honorary doctorate he received in 2021 from Canterbury Christ Church University.Keith Oliver has authored or co-authored four books on dementia since being diagnosed. He is an Alzheimer's Society Ambassador, a Kent and Medway NHS Trust Dementia Envoy, a member of the 3 Nations Dementia Working Group and a founder member of the Young Dementia Network. It's worth noting that the definition of young onset dementia is when it affects someone under the age of 65. Keith is often to be seen and heard on television and radio and at national and international conferences, and regularly contributes to newspapers, magazines and professional publications. He recently contributed to an Open University Publication entitled Education and Training in Dementia Care – a Person-Centred Approach, co-authored by Prof Surr. Forming part of the Reconsidering Dementia series, the book is a deep dive into the complexities of this once neglected subject. Like all the other books in the series, as well as being scholarly, it spells out what the theories actually mean for those at the sharp end, such as people living with dementia, their families, those working in dementia care, policy-makers and professionals. Prof Surr's career has centred on the delivery of truly person-centred care for the 70 to 80pc of care home residents who live with dementia, with a specific interest in supporting care home staff in their roles and methods, and evaluating their impact. Most recently Claire has been involved in researching cancer care for people with dementia.Education and Training in Dementia Care – a Person-Centred Approach, an Open University Publication, is available from Amazon. Hosted on Acast. See acast.com/privacy for more information.

I am sure that many people listening to my podcasts will be aware of two ground-breaking medical breakthroughs that have occurred in recent months. These are the immunotherapy drugs Lecanemab and Donanemab, which is shown to have slowed the decline in memory and cognition of people with early stage Alzheimer's disease by up to 40pc. These drugs do not, like others before them, merely mask the symptoms of Alzheimer's, which accounts for over 60pc of all dementia cases – they modify the disease itself. They bind to the Amyloid plaque that builds up in the brains of those with Alzheimer's, triggering the body's own immune cells to remove the destructive plaque. My guest, Dr Richard Oakley, the Alzheimer's Society's Associate Director of Research, has described the arrival of Donanemab as a turning point in the fight against the disease.Dr Oakley says that treatments like Donanemab are the first steps towards a future where Alzheimer's could be considered a long-term condition. People may have to live with it, but they could have treatments allowing them to manage their symptoms and continue to live fulfilled lives. The big question is: if the drugs become available in the UK, will the NHS be able to deliver them to those they would most benefit? Hosted on Acast. See acast.com/privacy for more information.

In her native America, Lori La Bey has been recognised for her tireless work to improve the lives of those with dementia through creating, discovering and making accessible a wide range of resources. She has been hailed as a Health Hero by none other than Oprah Winfrey and championed as an Architect for Change by the former First Lady of California, Maria Shriver.Since walking away from a successful career in real estate in 2009, Lori has launched America's first radio station dedicated to dementia – indeed, Alzheimer's Speaks is believed to be the first dementia radio station in the world. Global first or not, Alzheimer's Speaks gives a voice to everyone, allowing people and companies from throughout the world to share their business and educational resources, products and advice. While a Dementia Map provides a worldwide directory of blogs, relevant enterprises and events to which individuals and companies can sign up to make their offerings available to a wider public. Lori was instrumental in creating America's first dementia friendly community in Watertown, Wisconsin in 2013, three years later she launched one of the country's first memory cafés in Roseville, Minnesota. Her webinar series, Dementia Chats, sees the real experts – those living with the condition – offering their invaluable advice. Recently, her children's book, Betty the Bald Chicken, co-authored with Scott Carlson, was published. As with all Lori's dementia work, the book is inspired by her mother's 30 year struggle with Alzheimer's and her own caring role. But it's not limited to dementia, Betty's story applies to virtually any situation in which someone finds themselves on the outside, struggling to fit in and not being understood. It teaches people of all ages that we have much more in common than sets us apart.“We need to shift how we care for one another and ourselves from crisis to comfort,” Lori told Maria Shriver. “We need to give hope and support to families and professionals alike, through open conversations, shared life stories and lessons learnt. Dementia is not a disease of one but of society”. Hosted on Acast. See acast.com/privacy for more information.

In this podcast I talk to two women who, in their different yet linked ways, have grown to appreciate the importance of identity, purpose and togetherness. The common theme isn't dementia but being the partners of military men – though never fear, dementia plays quite a part in our discussions as you will hear. Heather Sharp and her husband were both serving in the Army when, after having their two children, Heather made the difficult decision to leave. She didn't know what to expect as a military wife and readily admits she had preconceived notions of coffee mornings and bridge. How wrong she was.Heather discovered a diverse, dynamic and resilient group of women who had all made huge sacrifices to support their partners' careers, and she realised that if this formidable set of women harnessed their skills and experiences they could achieve incredible goals. And so the Forces Wives Challenge was born. Through their feats of endeavour, they raise funds for deserving causes that almost always involve Forces children. My second guest is Steph Quintrell. Another Army wife and mother, Steph worked for many years in the care sector, often among those with dementia, until, in 2019 she was diagnosed with a profoundly life-changing complex neurological disorder and found herself permanently confined to a wheelchair. She says it took her two years to come to terms with her diagnosis. Then she discovered the Forces Wives Challenge on Facebook and immediately recognised the women involved in it as kindred spirits who were, like her, energetic and passionate. She couldn't physically partake in the physically demanding challenges, so took on an admin role, which she loved. A keen horsewoman, Steph rediscovered freedom and independence through riding and it was her husband John who suggested that, were the Forces Wives to take on a riding challenge, Steph could take part. This June, Steph will be part of the team crossing the Pyrenees on horseback as they recreate the Second World War Freedom Trail, one of the many escape routes over the mountains into Spain. An astonishing achievement for anyone, a true route to freedom and independence for Steph, who told me, “Being part of the Forces Wives Challenge gave me back my sense of being, of identity and purpose. I'm a much happier person now – in fact, I have a happier life now than before my disability”. Hosted on Acast. See acast.com/privacy for more information.

Susie Singer Carter spent her childhood as a gymnast, an entrepreneur (selling her toys door-to-door), debate champion, party planner, flag twirler and cheerleader, while surviving her parents' divorce and her father's untimely death in a plane crash.While studying journalism at UCLA, she hosted a radio show, modelled and sang in a pop group produced by Chuck Lorre. After college, she opened a handmade jewellery store, acted in TV and film and then decided she wanted to create the projects. She worked in development, launched a production company, Go Girl Media, and wrote and produced two CBS tween shows.When her mother Norma developed Alzheimer's, Susie became her caregiver and a spokesperson for Alzheimer's, while writing a screenplay for Lionsgate and co-producing a feature for Sony. She signed a deal with Fox, wrote, produced and directed a pilot with Bryan Cranston of Breaking Bad fame, plus two documentaries for Women's History Month.She launched an award-winning podcast, Love Conquers Alz (available on all podcast platforms), and an award-winning film, My Mom and the Girl, based on Norma's dementia, starring the late Valerie Harper (aka Rhoda of Mary Tyler Moore fame) in her last, poignant, wonderful performance. My Mom and the Girl is funny, moving and profound – a 20 minute celluloid love story from a daughter to her mum. I strongly encourage everyone to watch it. Here's a Vimeo link to it: https://vimeo.com/266772460r Hosted on Acast. See acast.com/privacy for more information.

I first met professional cellist Dr Claire Garabedian at a wonderful musical evening where three internationally renowned opera singers performed a piece written for audiences of older people and those with dementia.She spoke then of the powerful communication – the dialogue, conversation, connection – between the performers and audience members. It seems to me that throughout her extraordinary life Dr Garabedian, who was born and raised in America, has been connecting and inspiring people through music.Dr Garabedian has played with modern and Baroque orchestras in the USA, Japan and the UK, and chamber music with many of the world's greatest musicians. She's also played her cello in the most intimate of settings, at the bedside of individuals who are dying. It was while doing the latter that she experienced at first-hand what she describes as the “raw, intense realness of death and dying – and a purpose for playing music that is entirely separate from performing”. Fired up by this, she enrolled in an American course using music as a transitional healing force and qualified as a Certified Music Practitioner, enabling her to play her cello at the bedside of people in palliative care. Relocating to Scotland in 2007, she completed an enhanced palliative care course at the University of Stirling which led her ultimately to studying for a PhD in Sociology, exploring the effects of playing familiar music on a solo cello on the relationship between two listeners: a care home resident with dementia in palliative care and someone closely connected to them. Dr Garabedian then became a Researcher of creative arts and dementia at the University of Worcester. She now combines her quite brilliant talents, experience and knowledge to provide services for all sorts of people, from those with health conditions including dementia to their families and carers, to those who are nearing the end of life, to students and, really – as far as I can make out – anyone interested in exploring the use of music to support and connect us all. Dr Garabedian's website can be found at drclairegarabedian.com Hosted on Acast. See acast.com/privacy for more information.

Kate Lee, the chief executive of the Alzheimer's Society, describes herself as a good Yorkshire girl, “What you see is what you get”. I last interviewed her in the dark days of December 2020 as people living with dementia in care homes became virtual prisoners, their relatives only allowed to see them through windows.Most of those with dementia, who account for over 70pc of care home residents, had no idea what was happening, why their loved ones no longer came to see them, they felt abandoned, alone, frightened. No one was more aware of this at the time than Kate, whose mum Barbara was diagnosed with vascular dementia 18 years ago and now lives in a care home. In this week's episode, Kate and I talk about her mum and how the long months of lockdowns impacted on her and her dad, who still “flirts terribly” with her mum after 60 years of marriage. We also discuss the terrible toll of Covid on care homes, their residents and staff – and the Alzheimer's Society's call for better pay reward and recognition within the care system to ensure that it is seen as a respected profession with proper career progression. Kate describes how the society is partnering with others to introduce innovations such as the Longitude Prize to drive the creation of personalised, technical solutions co-created with people living with early stage dementia to help them live more independent, fulfilling lives. She tells me about their new Help and Hope strategy to ensure their services reach communities who have traditionally not had access to dementia support, and about the need for volunteers to enter clinical trials during the early stages of their symptoms. Kate bemoans the prevarication and delay confounding progress in the largest healthcare crisis of our time. We need leadership and action, she says, not “existential dementia faff”. Hosted on Acast. See acast.com/privacy for more information.

Jean Lee is a retired American teacher from Ohio who, like me, is an Alzheimer's Daughter. However, in Jean's case, both parents were diagnosed with dementia. And – and this is quite extraordinary – they were both diagnosed on the same day. Jean is also, like me, a writer, and after her parents died she penned a memoir of her mum and dad, of their deep, lifelong love for each other and how they and their unbreakable bond weathered the tumultuous storms of dementia. Called Alzheimer's Daughter, the book is at once a tender, highly personal account of one family's experiences and a universal story with moments that many of us will recognise only too well. Several descriptions brought back memories for me, perhaps none more so than when, after her parents' death, Jean is asked whether she's given herself permission to fall apart. “Absolutely not. I don't believe I'll fall apart, because mum and dad will suffer no more,” she says. “I've fallen apart for the last ten years, now I'll put myself back together”. Jean Lee is a consummate writer and an incredible daughter. Though besieged by doubt about publishing her book, constantly worried that she was betraying her parents, it seems to me that in writing it, Jean began to do just what she said she would – rebuild her own life. After her book came an offer to work with another American author, Marianne Sciucco, to gather stories written through personal experiences of dementia into an AlzAuthors collection. That was in 2015. Seven years later, AlzAuthors has over 300 books in their store and more than 300 authors writing for them (including little old me). Three years ago they became a not-for-profit enterprise. Their website signposts readers to caregiver resources and blogs, their travelling libraries, their newly launched customised caregiver collections and their own very good podcast. Hosted on Acast. See acast.com/privacy for more information.

My guests today are Chris Maddocks and Rachel Thompson, two women who both know a lot about Lewy Body Dementia. Chris was diagnosed with vascular dementia six years ago at the age of 60. At the time she viewed it as a death sentence, but the Alzheimer's Society saved her and when she became one of their ambassadors, she discovered hope and a renewed sense of purpose. Rachel is an Admiral Nurse, a dementia nurse supported by the charity Dementia UK, and she specialises in Lewy Body dementia. Although this form of the condition accounts for roughly ten to fifteen percent of cases, it is still underdiagnosed and misunderstood, and a large part of Rachel's role is to increase awareness of this lesser-known disease and offer expert clinical advice.When Chris was struggling to find any support after being told she had Lewy Body disease, she was put in touch with Rachel and for the first time since her diagnosis, everything began to make sense. Rachel helped Chris and her partner Heather to develop coping strategies for Chris's symptoms. And, as with all Admiral Nurses, Rachel also offered the couple support with emotional and psychological issues. For as well as the challenges of Chris's dementia, the pair encountered discrimination as a lesbian couple. They had to contend with what they describe as double stigma: both for Chris's dementia and for their same-sex relationship. Rachel gave them the confidence to be more open about their status. Chris's partner Heather put it very well when she said that Rachel's strategies have taught her not to get hung up on the little things because they don't matter. What matters, she says, is the time that she and Chris have together. Hosted on Acast. See acast.com/privacy for more information.

I first interviewed Professor Sube Banerjee on my podcast in November 2020, when unbeknown to us, we were about to have our Christmas celebrations ambushed by Covid. Our chat was stimulating, thought-provoking, energetic and creative. It was also full of hope, just like him. In fact, I gave the podcast the title, The Professor of Hope, which many listeners loved. Sube Banerjee led the development of the UK's first national dementia strategy in 2009. It constituted a huge step towards changing the way the condition is viewed by both Government and public. Over the next decade or so the Professor never lost his enthusiasm and ability to inspire, whether as Professor of Dementia and Associate Dean at Brighton and Sussex medical school or, latterly, as Executive Dean of Plymouth University's cross-disciplinary health faculty. Back in 2020 we spoke about two of his projects: The first, Time for Dementia, is a complementary training programme for healthcare students of any sort who enter the world of people with dementia and their families by visiting them, in pairs, every term. The second, Radio Me, takes the familiar technology of radio and, using advanced technology, tailors it to the needs of those living with dementia so that it can play calming, personalised music at appropriate times or remind individuals to take their medicine. Both initiatives were paused during Covid and the Professor and I promised to catch up on them again when life was back to normal. Inevitably, in the intervening period this highly respected clinician and academic (who has a veritable alphabet soup of letters after his name) has come up with a new venture. DETERMIND considers the inequalities in dementia care thrown up by factors such as ethnicity, sexuality and socioeconomic status. It also examines the impact of earlier rather than later diagnosis. Professor Banerjee strongly believes that it is better to know your diagnosis than not to know so that you can plan for the future. “Knowledge is power”, he says. Hosted on Acast. See acast.com/privacy for more information.

Sage House is a dementia hub in Tangmere, West Sussex. Said to be the first of its kind in the UK, the hub is located in a light, airy building of dementia-friendly coloured zones, wide passageways, Daisy's café and numerous meeting rooms for everything from legal advice on drawing up wills and powers of attorney to hairdressing, from Citizens Advice Bureau sessions and dementia assessment clinics to Reiki. The hub provides a one-stop shop to give all the various services that someone diagnosed with dementia and his or her family might need. Crucially, they will also be allocated one person to help them navigate their way around the mind-boggling systems and choices they will now confront. Chief executive Sally Tabbner is passionate about what she does. She was recruited even before Sage House officially opened in 2018 and has taken her team from a staff of three to 36 employees and 66 volunteers who between them over the past 12 months have provided direct support to over seventeen hundred people affected by dementia. So successful has the hub proved that Chichester University is currently evaluating the model to see if it might be rolled out across the UK. Volunteer Ronnie Patmore, whose late wife Dolly used the hub until she died during the first Covid lockdown in 2020, initially felt guilty and doubtful about leaving his wife in the care of others. However, ably supported by Jackie, a dedicated, personal Wayfinder, Ronnie soon realised that the hub and its resources were just what the couple needed. And since Dolly died, he's volunteered at Sage House, helping in the café and, in his inimitable way, cheering up the customers. “I find myself chatting to people starting out on the same journey as I have had,” says Ronnie. “I know what it's like and I hope that if I speak to them I might brighten their day”.Find out more about Sage House at www. www.dementiasupport.org.uk/sage-houseThe book Pippa mentioned, by Peter Berry & Deb Bunt, is called Slow Puncture: Living Well With Dementia, and is available from Amazon. Hosted on Acast. See acast.com/privacy for more information.

When Dame Barbara Windsor died in the dark Covid days of December 2020 the nation mourned the loss of not just an immensely talented and likeable actress, but a friend. We felt we knew this pocket dynamo, through her countless appearances, from her early days in the Carry On films to her later role as Peggy Mitchell in Eastenders, which she played for 20 years. We didn't really know her of course, not the real Babs. But one man did. Scott Mitchell was 26 years younger than the love of his life. They met when he was 29 and she was 55 and married, and predictably, many thought the relationship wouldn't last. How wrong they were. The couple were married for 27 tempestuous years during which they weathered her many bouts of ill health, his drinking, her fame and its relentless intrusion into their lives. At different times, they both encountered the black dog of depression. Yet despite it all their bond proved unbreakable and, when Barbara was diagnosed with Alzheimer's in 2014, Scott was there by her side. Four years later they went public with Barbara's condition. This was hugely important. When entertainment royalty such as Barbara Windsor speak out it makes headlines, generates discussion, and raises awareness in a unique and powerful way. In less than 48 hours the subject of dementia was projected into everyone's lives. Donations to the Alzheimer's Society increased 30 per cent. In 2019, Scott, a former alcoholic, ran the Dementia Revolution Marathon: it was to become the most successful London marathon partnership of all time, raising over 4 million pounds. It is only now, having read Scott Mitchell's account of his phenomenal life with this legendary actress, that I understand the depth and complexity of their love for each other and the huge courage it took them to tell the world their very personal news. Their handling of Barbara's dementia was perhaps the most poignant example of the way in which their personal and public personas were inextricably linked. Just a few months after taking the painful decision to move his wife into a care home – “My Fear Has Become A Reality” screamed the Sun headline – Scott was told that Barbara was now receiving palliative care.When her death was announced it led all the news bulletins, Good Morning Britain dedicated a whole programme to her, the then Prince, now King, Charles publicly announced his sadness, along with the then Prime Minister, other politicians, Royalty, and hosts of celebrities, many of whom were close friends of the couple. Barbara Windsor's illuminated name was circulated round the top of the Post Office and Blackpool Towers, and Alzheimer's Research UK set up a condolence page that raised £130,000 within the month. This summer Boris Johnson launched a national mission to tackle dementia and pledged to double research funding into the condition to 160 million pounds a year by 2024. The mission is named the Dame Barbara Windsor Dementia Mission. What a remarkable tribute, and legacy. Everyone of us who has been, is or will be touched by dementia owes this incredible couple a huge debt of thanks. Hosted on Acast. See acast.com/privacy for more information.

When I last interviewed today's guest for this podcast it was the summer of 2020 and we were cautiously emerging from our first lockdown. Back then, in July 2020, I said that I admired this young mum from Chepstow for her understated determination, her strength of character and her obvious love for her family. Two difficult years on those words are truer than ever. Suzy Webster's Covid experiences have been an intense, distilled version of many of ours. We've all had to adapt, to become used to a new norm all the while knowing that it wasn't forever. For better or worse, families were thrown together in unusually close proximity. For Suzy, whose parents came to live with her, her husband Andrew and their two young daughters ten years ago, this meant caring, intimately, for her mum Barbara whose dementia is now so advanced that she rarely speaks and cannot walk or look after her personal needs. It brought two terrible days when they thought they were losing Barbara and open, honest conversations with the teenage girls.While continuing to work three days a week for Age Cymru (the Welsh equivalent of Age UK), Suzy, a trained social worker, cared for her mum for over three months before fully handing back this role to formal carers a few weeks ago. She was also home schooling her girls. She admits it was exhausting – physically, mentally and emotionally. Zoom helped them all. And online yoga gave Suzy breathing space. Recently, since the world's opened up, she's started playing netball and launched herself into sea dipping.So much has changed since 2020, Suzy says. “But every day is new and life moves on. There are moments of joy most days; sometimes you have to remind yourself to look for them and dwell in them. I hold mum's hand more now and stroke her hair. The girls tell her about their day and Andy always gives mum her dinner when he comes home from work”. It was very apparent the last time she and I spoke that Suzy's husband Andy, a hospice chaplain, is a huge support to her. “I couldn't have done any of this without him,” she told me. “He's a very special human being”. See acast.com/privacy for privacy and opt-out information.

Older people, says geriatrician Dr Lucy Pollock, are interesting. They are also boring, good-humoured, bad-tempered, serene, irritable, amusing, grouchy, selfish, generous, happy-go-lucky and nervy. “Older people are just all of us grown up”. Of course they are – so why can't we all see that?It is in order to open up the conversation around old age, something we all reach if we are lucky enough and yet seem to shy away from, that Somerset-based Lucy has written her book, called – without ducking or diving – The Book About Getting Older, for people who don't want to talk about it.Published last year, it's received plaudits from reviewers as diverse as the British Geriatrics Society and comedian Sandi Toksvig, who described it as the most important book about the second half of your life you'll ever read, to the ex-shadow chancellor Ed Balls. The Evening Standard summed it up for me. “Dr Lucy Pollock,” it said, “is a geriatrician, and the kind of person you want to clone”.Lucy, who has specialised in the care of those who are frail and elderly for 21 years, says that in the last quarter of a century geriatric medicine has come into its own as more and more doctors realise how important and interesting it is, and it now attracts young medics in their droves. She loves it because it's complicated, team-based, unbelievably rewarding and involves a lot of cake. “You have to be really nosy to be a good geriatrician” she says.Towards the end of this pretty lengthy book – which reads like a dream – and after she's covered all the knotty issues, from the extravagant cocktail of pills often prescribed for older people to preventing falls, choosing care homes and gently suggesting to an ageing relative that they should give up driving, she looks back over her years as a geriatrician.She observes that her patients have been assets with gifts to offer of which she's been the recipient. She's been given a look, a letter, a pat on the hand, cherry liqueurs, an email that left her sitting at her desk, tears streaming, a card, a smile, a folded note that contains love as tangible as a pressed flower, secrets… and lesson after lesson in courage.You can see now what I mean about her joyous writing. She brings subjects alive with characters who walk off her pages into your life – characters like George and Margaret, Nancy and Clem, Noel and Mark – and all their individual, sometimes uplifting, sometimes heart-breaking, stories teach us things about old age, whether it's advance care plans, incontinence, near-impossible discussions around resuscitation or the big D, dementia, which she describes as “a word primed with emotion, pinned in the thoughts of many to images of loss, fear, indignity” before going on to explain why this perception is so wrong.Lucy Pollock, proud patron of Age UK Somerset, is obviously, very clever, but she's very funny too, and human and self-aware. She offers her chapters on dementia with, and I quote, “some hesitation and considerable respect” because she hasn't experienced a diagnosis of dementia or known what it's like to live in the same house as someone with the condition day in, day out. How wonderfully refreshing is that. See acast.com/privacy for privacy and opt-out information.

This week I was delighted to welcome, not one, but four Well I Know Now guests. I thought it was important to talk to them all as they each play vital roles in a Folkestone-based company that works with older people and their families to improve their wellbeing.Plan with Care, launched in 2018, is the brainchild of Chris Gage, a social entrepreneur with a passion to improve quality in care, and his friend Nathan Harris, a chartered financial planner with over 20 years in his sector. The company's consultants work alongside the family, friends and – importantly – solicitors of older people (many who live with dementia) helping them to plan their care. Wellbeing consultants take time to understand an individual's passions and goals, offering each family support and guidance through what is almost always a difficult period. Chris Gage is a strong believer in the importance of creativity in care and says creativity, which should be the norm in every care setting, is often impeded by fear, which creeps in from different angles – from the negative media backdrop, from local authorities and relatives who are understandably anxious about safety, and from the weight of compliance rules. But, says Chris, with real leadership, creativity can provide more, much-needed time. When other people such as police, children, volunteers, are encouraged into care homes a virtuous circle is created: carers have more time and a sense of freedom and confidence grows.Nathan Harris grew up in Dover and as a child his grandmother played a big part of his life. When, years later, she developed dementia, this hit him hard. He found it difficult to engage with her and turned to his friend Chris for advice. By now a financial planner with expertise in pensions, investments and tax planning, he saw, too, the burden that his grandmother's dementia placed on his mother as she struggled to make difficult decisions with little or no guidance.Alise Kirtley is someone I first met at a dementia conference several years ago, when I was struck by her thoughtfulness and quiet confidence. Alise, it turns out, is Plan with Care's lead wellbeing consultant and her credentials are impressive. She has worked with care homes as a culture change manager and practice development consultant, delivered care training, and contributed to the Mental Health Foundation's dementia truth inquiry. She holds a Masters in ethical business development in dementia care and is qualified in various aspects of advanced dementia care.But more than this, she has an ethos of care that runs through her, from her physical demeanour to the haunting songs she writes and performs with her band The Bearing. A classically trained pianist and composer, Alise began her musical journey aged six, but asked, when she was 11, whether she wanted to be a musician she wrote, “I will always love music but I want to do something that will help people”. Now she sometimes combines the two, bringing songs into her caring role. I was introduced to my fourth guest through her wonderful blogs. Carrie Ioakim, a qualified counsellor with many years of experience working for charities, is an assistant wellbeing consultant and a creative companion at Plan with Care. Growing up in Kent, she was very close to her grandmother who developed dementia and lived with Carrie and her family until she moved into a care home after a series of falls.It was at the care home that Carrie met a carer who made it her business to get to know them all, leafing through family albums and listening to all their stories. Carrie says that though her grandma was never the easiest of ladies, this wonderful carer handled her with patience and grace, loving her grandma for the fight she still had. “This had a real impact on me and I remember thinking at the time that this must be the most amazing job ever,” Carrie told me. See acast.com/privacy for privacy and opt-out information.

Matthew Seager's play, In Other Words, distils dementia – what it is to have it, what it is to watch someone you love being lost to it – into just 75 minutes, pulling its audience into the emotional turmoil that unfailingly accompanies this cruel condition. Matthew told me that he'd been inspired to write it after visiting a dementia care home during his drama studies at Leeds university. For one module, students could decide which aspects of the performative process they wanted to focus on: Matt chose care homes and applied theatre.He visited Berkeley Court care home and researched which of the senses triggered the most powerful reactions and memories in people living with dementia. Each sensory stimulation session was bookended with music that might mean something to the residents; Matt witnessed seemingly lost individuals who could no longer speak stand up and sing every word of songs connecting them to their early life.The 21-year-old Matthew was blown away by what he'd seen and vowed one day to use his experiences creatively – while continuing his training at the prestigious Royal Conservatoire of Scotland he began working on In Other Words. It debuted in 2017 at Islington's Hope Theatre and I found it very moving to watch. With virtually no props and a scattering of evocative songs the couple switch between life before and life after, Arthur's condition takes hold. The play powerfully conveys the ups and downs, the flaming rows and never-ending confusion and grief of a married couple experiencing dementia together. The saving grace is their song, Sinatra's Fly Me to the Moon, which 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, and reveal the tenderness and love that still exist between him and Jane. I can do no better to sum up the play's profound impact on its audience than quote from one theatre-goer, who said,“Thank you for letting me finally cry over the death of my beautiful nan. She had vascular dementia and Alzheimer's and I cared for her for two years. After she died, I never cried. I think the pain and loss traumatised me so much. That was until I saw the show tonight. When Arthur was in his advanced stages and the earphones were put in and the music played, that's when the tears began to flow. It made me feel again. It felt so good to cry. Your play did that to me. It seemed to unlock all the pain in me. I didn't know theatre could be so powerful.”.The show has been staged in Scotland and Ireland, where it scooped multiple awards in the All Ireland One Act Finals. In the last few years, of course, the pandemic has shut our theatres and halted performances. Two tours of In Other Words had to be cancelled. Undaunted, Matthew translated the play into a film, contacting cinematographers and photography directors he felt would relate to the work.Launched online last autumn it immediately garnered a five star review. It is now available to watch on YouTube, where it is being offered as part of the music and dementia charity Playlist for Life's higher educational e-learning initiative. The rights have been purchased for a French language production opening at the Avignon festival later this year. See acast.com/privacy for privacy and opt-out information.

“Change your life with an Open University qualification” boasts the OU website. And this week's guest, author and dementia campaigner Gina Awad, did exactly that – though actually she changed not just her life but many hundreds, possibly thousands, of lives. For it was through a health and social care degree in 2011, at the age of 41, that she first became interested in dementia.Since then she's gone on to win one of only 12 of the highly competitive places on a training retreat in America for those who work or share their lives with people with dementia. She's trekked the Great Wall of China, raising £2,500 for Alzheimer's Research UK, been named Dementia Champion of the Year by the Alzheimer's Society, created a dementia friendly GP resource guide for Devon, introduced dementia-friendly cinema screenings, collaborated with award-winning cartoonist Tony Husband to produce two “Shining a Light on Dementia” calendars, been recognised as one of the one hundred most influential women in Exeter and, in 2018, received a British Empire Medal for voluntary services for people living with dementia in Devon. She also presents a radio show focussed on living better with dementia. But by far her biggest achievement, Gina says, is launching Exeter's Dementia Action Alliance. Later this year, in June, Gina's book, “United: Caring For Our Loved Ones Living With Dementia”, once again written in collaboration with the cartoonist Tony Husband, will be published. What is perhaps even more extraordinary is that Gina's passion and drive to improve life for those with dementia comes not from direct personal experience, but rather from childhood memories of her and sister visiting care homes with their grandmother, who encouraged residents to engage in the creative arts.“What really struck me then, over 40 years ago, was not the residents who were involved with the activities but those who weren't. I felt a myriad of emotions to which, at the time, I didn't connect. It wasn't until a few years ago that I realised the impact those residents had had on me. As a little girl I'd observed and identified with their sense of disconnectedness, fear and vulnerability – and their isolation and loneliness never left me”. Now, everything Gina does is about making a difference for those with dementia and their families. “I want people to feel included and understood, she says, and to be treated with compassion so that they can live a meaningful life”. See acast.com/privacy for privacy and opt-out information.

Ian Kremer has worked for over 25 years on his country's dementia policies. A member of both the Virginia State Bar and the American Bar Association, he was a director of the Alzheimer's Association focussing on state and local policy in Virginia, Maryland and the district of Columbia for 16 years before moving to head up the Washington DC-based Lead Coalition in 2012 – LEAD, L-E-A-D, stands for Leaders Engaged on Alzheimer's Disease. LEAD is a national coalition of over 200 member and allied organisations – from charities, pharmaceutical companies, neurological societies, academic and research institutes, healthcare and homecare providers – all of whom work to raise awareness of dementia and accelerate progress in three fields – the first, care and support; the second, detection and diagnosis and the third, research into prevention, treatment and cure. Ian, who has been LEAD's executive director for the past ten years, sees his biggest achievement in that time as (mostly) – his qualification – unifying the community of dementia advocates which was very fractured when he joined the coalition. Now, he says, though they don't agree on everything, the community agrees and collaborates on most and, importantly, it has productive and open lines of communication even when there are disagreements. This strength in unity has brought some great results, such as a whopping 700pc increase in dementia research funding at America's medical research agency and what Ian describes as a substantial expansion of the public health approach to dementia.I also explore with Ian the similarities and possible differences that exist between our two countries in the way we view and treat those with dementia and their families and carers. We discuss the extent to which stigma still lingers over the condition in America, as it does here, and whether the level of awareness and knowledge of dementia has increased in the US.For as long as he can remember Ian says he's lived his life by two maxims: Tikkun Olam, which roughly translated from the Hebrew means to “repair the world” and Martin Luther King Junior's words, “the arc of the moral universe is long, but it bends towards justice”. Which is something we all need to hear right now. His CV reveals that he is true to his beliefs. As well as his national role at the LEAD Coalition he holds over a dozen volunteer posts in health, dementia and care. He participates in several national steering committees, including a research summit on care and support for those with dementia and their carers, and he's a member of the executive committee for dementia friendly America.“For me”, Ian told me, “working with and for people who have dementia is just one way I can contribute towards repairing the world and helping to accelerate the bending of the moral arc towards justice”. See acast.com/privacy for privacy and opt-out information.

Niamh Condon has long believed that food is far more than fuel for the body. Coming from a large Irish family, she's always loved to cook and has known from a young age that sitting down for a meal together brings people close, it connects them and warms them, it comforts them, it nurtures relationships and binds societies.Having worked in the catering industry for over 20 years, in 2014 Niamh began cooking for older people and encountered the challenges faced by those who find it difficult to swallow (for which the technical term is dysphagia) and whose meals have to be pureed. At a nursing home in West Cork she was asked to blend food separately and serve it up with an ice-cream scoop. She recalls plating up a white scoop, a green scoop and a brown scoop for a woman who understandably thought it was ice-cream, but on eating it found it was hot, savoury and salty – not at all what she expected. The woman threw the plate on the ground and refused to eat it.The incident inspired Niamh to get piping. Now she is known for her fabulous pureed creations – from fish and chips to lamb shanks, scones and jam, bacon and cabbage, and scrummy cakes, Niamh's dishes look and taste like what they are. And funnily enough, once people are given food that looks, tastes and smells as it's supposed to, they are far more likely to eat it. Hardly rocket science.At the end of 2019 Niamh launched her own business, Dining with Dignity, creating appetising, visually appealing pureed food using special moulds provided by an Australian company and training other care home cooks homes to do the same. Her timing was, to put it mildly, unfortunate. Just around the corner, as we all know now (to coin a phrase), lurked Covid; and in the early spring of 2020 Ireland, along with the rest of the world, went into lockdown. Not before the Irish Times identified Niamh as one of their 50 People to Watch in 2020.And there have been golden moments over the past two frightening years, one of which involves a truly fabulous Golden Anniversary chocolate cake that Niamh created for Denis McCarthy and his wife Ann, who lives in a nursing home. Warning: get your tissues ready, it's a tear-jerker of a story.Now that, hopefully, we're beginning to get back to normal, Niamh is ramping up her business again. Though to Niamh, it's far more than a business. She is passionate about exposing the struggles, stigma and exclusion faced by those with swallowing difficulties. Imagine going into a room, she tells me, where everyone is split into two groups. One group is offered tea, coffee, biscuits and made to feel welcome, the second group is simply ignored – that's what it's like when you can't swallow. You feel isolated.“I set out to try and help as many chefs cooking for people with dysphagia as I could,” says Niamh. “I wanted to help those sitting around the table facing three scoops on a plate”. Niamh's cooking, her understanding and preparation of food, hold many valuable messages – not just about people with swallowing difficulties or even the ethos of care homes and the havoc Covid wreaked as it split families apart – but about what eating and sharing meals mean to us all, what they bring to us. There's an almost philosophical aspect to what Niamh does that speaks to the way we live our lives. See acast.com/privacy for privacy and opt-out information.

Ifirst encountered Beth Britton in 2013 at the Independent Age Awards, where she was named Best Independent Voice on older people's issues. I was one of those shortlisted alongside her and it was at the ceremony in central London that I first heard this young woman's incredible story, of how her dairy farmer father had developed vascular dementia when she was 12 and how his condition, with which he lived for a further 19 years, came to dominate her teens and twenties as she willingly sacrificed her chance of further education and a full-time career to focus on supporting him.During those almost two decades her father experienced what she describes as a myriad of health and social care services that varied from excellent to exceptionally poor. “What all the experiences had in common,” she says, “was what could be learnt from them to improve knowledge, awareness and care for all”.And to this end, after her father died in 2012 she set up her blog, D4Dementia, to provide support for people facing the many and complex social and health care challenges that she and her family had lived through. She sought to promote debate, improve dementia care and educate both care professionals and the wider population. By 2013, when I met her, she already had a sizeable and rapidly growing social media presence, and was a serious dementia campaigner. Alongside Beth's successful ten-year-old blog, sit a raft of other accomplishments. She helped plan and deliver the UK Government's first G8 Dementia Summit in 2013; she's a consultant, trainer and mentor whose had roles with care homes and charities, Government departments and national bodies such as Public Health England and the Care Quality Commission. Her list of public appearances and speeches is very, very long; and she often pops up on radio and television, where she's never less than polished, fluent and knowledgeable.She brings her professionalism, empathy and experience to bear on topics as profound as end of life care and as seemingly mundane but hugely important and detailed as skin integrity and swallowing issues. Running through all her work, as through mine, is her passion to ensure that the traumas and difficulties that she and her family experienced are turned into something positive. And in this, I think it's fair to say, she's succeeded. Useful organisations & websites:Beth Britton's own website https://bethbritton.com/TIDE, or Together In Dementia Everyday, a UK-wide network connecting carers and former carerswww.tide.uk.netDementia Carers Count, a charity who support families and friends caring for someone with dementia, dementiacarers.org.ukDementia UK (with which Young Dementia UK has now merged) is a charity that supports and trains Admiral Nurses, specialist dementia nurses who provide invaluable support to those with dementia and their families www.dementiauk.orgThe Alzheimer's Society, www.alzheimers.org.uk See acast.com/privacy for privacy and opt-out information.

Sir Tony Robinson is a highly regarded actor whose family come from the Eastend of London, he's also a presenter, writer, author, historian, political activist and charity ambassador – often taking on roles that combine his many talents, and earning himself a Knighthood in the process. Not bad for a man best known for playing a witless fool forever coming up with cunning plans doomed to failure.He caught my eye recently as the star of a short film to raise awareness of dementia, written by the brilliant cartoonist Tony Husband, who's appeared on my podcast – twice. Entitled Joe's Journey, the film (available on YouTube) cleverly encapsulates the confusion and fear that engulf not just Joe, who has the condition, but his loved ones and even, to a lesser extent, the kindly, puzzled strangers he encounters. For just like Tony Husband, today's guest has personal knowledge of what he calls “the manifold horrors” of dementia as first his dad and then his mum succumbed to Alzheimer's. It was the role of Baldrick, the hapless servant of Lord Blackadder, in the hit BBC television series that catapulted him to fame. But poignantly, even as Robinson was enjoying rising success, his father's dementia was making itself more and more apparent. Just a few years after his father's death his mum Phyllis developed Alzheimer's, and when the condition worsened she moved into a care home where she lived for a further eight years. Shortly before she died, Robinson made a BBC documentary, Me and My Mum, exploring the issues around dementia and care homes. He says the public's reaction was extraordinary, carers and people with dementia wrote him heartfelt, handwritten letters describing their own appalling situations. He went onto become an Alzheimer's Society ambassador, believing that, though we can do little on our own, “together we can move mountains”. Tony Robinson has been an outspoken critic of the inhumane way in which care home residents were abandoned at the beginning of the Covid pandemic and says that though he still misses his parents – his dad died in 1989, his mum in 2005 – he's thankful that they weren't alive to endure the ordeal confronted by many of society's most defenceless members.He cites the statistic that there were in excess of 5,000 more dementia deaths than usual in the first four months of lockdown. And says that though he understands the need to protect vulnerable people living in care homes, there should have been more of a balance so that the only way a parent could see their child didn't have to be through plate-glass, like an animal in the zoo.“Sometimes,” he says, “the best medicine is the chance to hold the hand of the person we love”. See acast.com/privacy for privacy and opt-out information.

I first encountered Ian Donaghy, aka Big Ian, through his then 10-year-old daughter Annie. She was telling an audience of 800 about her grandma who developed Alzheimer's at 58. Nana, she said, is still nana despite her condition – she still dances to the radio, ice-skates backwards and lets her watch TV programmes no matter how dreadful they are. “Nana forgets,” she said, “so I remember”.Annie's nana died two years ago. Annie Donaghy, who must be in her late teens now, is a chip off the old block. And what a block. At six foot two inches, Ian Donaghy has big ideas, all the time, huge energy and a massive Geordie heart. He also has a way with words and people, some listeners may know him by his Twitter handle @trainingcarers, because that's one of the many things he does – though not quite like anyone else. It's fair to say his training style is flamboyant rather than finickity, exuberant rather than measured.He's a musician too, and an entertainer, who's “filled theatres for 30 years” and sung with the biggest names around, including James Blunt, Lulu and Justin Timberlake. During lockdown last year Ian wrote his third book, A Pocketful of Kindness, when he realised that venues such as the Excel in London that he usually fills as a conference speaker (yes, that's another one of his hats) were being converted into Nightingale hospitals. The idea is that you gift a copy of A Pocketful of Kindness to someone who, though they may not realise it, has made an impact on your life through their kindness. Inside you write why they are receiving it. His first book, Dear Dementia, is packed with bite-sized chunks of wisdom delivered in Ian's inimitable style. While another, The Missing Peace, (which Ian describes as a patchwork quilt of conversations, letters, monologues and stories to explain the survival techniques people have created to survive grief) has been adapted into a play and, all being well, will debut at the Joseph Rowntree Theatre in January. See acast.com/privacy for privacy and opt-out information.

A few years ago I stumbled across a wonderful local project initiated by a group of church elders. Launched in the village of Debenham in Suffolk in 2009, its aim was simple: to care for older, vulnerable people in the community where they belonged, so as to avoid them having to leave their neighbourhood, their loved ones, all that was well-known and comforting, to go and live in a care home somewhere else – which is what just over half of these older residents were having to do. And my guest this week is the project's chairman, Lynden Jackson. The scheme's guiding principles are that it should be local, operating within a four and a half mile radius, benefiting and implemented by people motivated to offer their help to those they know; that it should avoid bureaucracy and that it should concentrate on what could be done, not stress about what couldn't. Its philosophy is neatly summed up in a catchphrase worthy of Saatchi & Saatchi at their best: Make it local, Make it simple, Make it work. Within six months – with the collaboration and support of the local mental health trust, adult care services, three major charities, the library, the church and the post office – an advice and information centre and an activities and social hub had been set up, the first Food ‘n' Friends lunch club held, a website created and a confidential telephone helpline launched. Further activities have developed and evolved, evaluations have been undertaken and other parts of the country have looked to Debenham for inspiration.A big part of the project's success is that it works from the bottom up, not the top down – volunteers don't support professionals, but vice-versa. As Lynden Jackson put it so well, “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. See acast.com/privacy for privacy and opt-out information.

Carol Sargent is a pharmaceutical scientist turned social entrepreneur from Leicestershire. Holidays had always been important to her and her family, but when her mum was diagnosed with dementia in 2007 all that changed. Searching for holiday cottages that would be suitable for her Edinburgh-based parents she discovered that there weren't any. Carol had already scaled back her work so that she could visit her mum and dad in Scotland, and her mother-in-law, who also had dementia, in Liverpool. And it was at this point, finding herself unable to identify anywhere for her elderly relatives to take a break, that she came up with the idea of Mind for You, a for-profit social enterprise offering personalised holidays to people with dementia and their families. Seven years – and one global pandemic later – Carol's co-operative charity Mind for You, with its six permanent staff and pool of 12 freelancers to accompany families on their holidays, has provided 129 breaks for over 1,000 contented guests. The success of the venture is largely down to Carol's determination to make everyone's experience as relaxing and rewarding as possible, always visiting people before their holiday and then giving them the chance to unwind sound in the knowledge that they and their needs and desires are understood. The result is a break away from home that is just like the traditional family holidays we all know and love. Stunning properties to stay in, beautiful locations, delicious new recipes to try, the joy to be found in exploring a new locality. Everybody is free to do what they want; there's a flexibility, a spontaneity even, that is so often lacking when dementia's involved.During the pandemic, when there were no Mind for You holidays for 18months, Carol used the time to expand the business digitally, plan its future and raise money. And now, since the country's opened back up, there have been several trips to various destinations – from Norfolk to Perthshire, the Cotswolds to the Highlands, the Peak District to Dorset. All carried out in a spirit of fun and warmth.To Carol, caring is a skill, it's all about knowing the person. “The holidays allow us to embrace dementia and get to know people quicker”, she says. “It's a laugh a minute and everything that's said is honest, there's no hidden agenda”. See acast.com/privacy for privacy and opt-out information.

Trevor Salomon knows first hand the difference that other people's attitudes can make. When his wife was diagnosed with Alzheimer's aged 56 she was working at Sainsbury's. He says that if they'd fired her then he would have had to accept it. But they didn't. They bent over backwards to keep her on, even when the disease robbed her of many everyday skills – the Sainsbury store in Harrow adapted her role, allowing her to continue with them for four and a half years after her diagnosis and providing her with what her family describe as a lifeline. The heart-warming story made news around the world when her son posted a tribute thread on Twitter. “Sainsbury's were more than just an employer,” he tweeted. “They supported her like a family. They made her struggle lighter and brighter. They served as a reminder of her self-worth every day at a time when she was quite literally losing everything she once was”.The Sainsbury's employer was Yvonne Salomon, who now lives in a care home in Harrow, and my guest this week is her husband Trevor. See acast.com/privacy for privacy and opt-out information.

Grace Meadows knows the enormous power of music, not only for those with dementia but for children with autism, for women about to give birth and those who've just become mums, for adults with severe mental health conditions and youngsters with profound and multiple learning disabilities.A musician herself, she believes everyone is musical. “We all have a heartbeat,” so we all have a pulse and a sense of timing,” she says. “We all have our own style of movement so we all have rhythm; we each have unique voices, so we create pitch and melodies – and our voices together create harmony. “But more than that, we each have our own lifelong relationship with music. And it's that unique and personal relationship with music that tells people who we are”.Grace is best known today for quite brilliantly spearheading the Music for Dementia campaign to make music an integral part of dementia care in the UK. The campaign was launched in 2018 in response to a report that revealed that good quality music therapies are available in only five per cent of care homes, 70 per cent of whose residents have dementia. Today, Music for Dementia works with over 200 charities and organisations, with the health and social care sector, the music industry and government departments.Grace lives up to her appropriately musical and elegant name. She is understated rather than showy, thoughtful rather than flamboyant – and highly successful at what she does.Since the campaign was launched, broadcaster and Desert Island Discs presenter Lauren Laverne has become its famous face as Ambassador, it has created a musical map to connect those with dementia to local music-related events and services, and it has launched Music for Dementia radio to bring music directly into people's homes.To top it all off, late last year the Hunter Foundation donated half a million pounds to the campaign.Grace is a media natural, as at home on the BBC Breakfast sofa or Radio 4 as she is playing her contra bassoon. I frequently stop what I'm doing around the house to turn up the volume and listen to what she has to say: she's fluent, knowledgeable and passionate about the power of music to transform lives. See acast.com/privacy for privacy and opt-out information.

Full disclosure, today's guest Wendy Mitchell is one of my all-time favourite people. She is positive, witty, resilient, genuine and wise. She is the author of Somebody I Used To Know, a ground-breaking memoir that was selected as Radio 4's Book of the Week, chosen as one of the Times' newspaper's books of the year, and made it onto the Sunday Times best-seller list. She is also living with dementia.Seven years ago at the age of 58 Wendy, a former NHS manager, was diagnosed with Alzheimer's. In a classic stroke of down-to-earth genius, she started a daily blog to serve as her memory. It is called, cleverly, Which Me Am I Today, and it is insightful, compelling and beautifully illustrated with her own photographs.She loathes her dementia for stealing away everything that once made her who she was and for the havoc it will wreak on her two adult daughters' lives, but she also recognises that it has given her a rare perspective on the world. She has capitalised on this as a first-class dementia champion, her new life becoming as busy, in different ways, as the life she used to lead. Pre-pandemic Wendy was to be found travelling the country by rail, bringing her trademark humour and insights to primetime television and radio shows, conferences and colleges.As with all the true greats, whatever their field, Wendy makes it seem easy. In truth, each cab and train journey involves meticulous preparation, military timing and countless Ipad reminders. And as she once discovered, she can never stop pushing herself on. To stop, to take time off, is to let Alzheimer's win. So Wendy Mitchell keeps on writing, her camera keeps clicking as she trundles round her village or, as she's recently started doing again, traversing the country, opening all our eyes to what dementia is, and how it's possible to live a successful and rewarding life with it. See acast.com/privacy for privacy and opt-out information.

Karen Penny is a powerhouse, a force of nature, a walking Wonder Woman. Over the last two and a half years she's covered ten and a half thousand miles, got through ten pairs of boots, ten hats, one thousand custard creams, three birthdays and two wedding anniversaries. And single-handedly raised £126,000 – and counting – for Alzheimer's Research UK. I'm not sure which is the more staggering really – the ten and half thousand mile trek or the £126,000 she's raised. Either way, it's an extraordinary feat. Excuse the pun. Karen Penny has traversed the whole of England, Ireland, Scotland and Wales including over 110 of their islands. She says walking's in her bones, and so when she saw the effects on both her mother-in-law Alma and father-in-law Kingsley of their vascular and Alzheimer's disease she decided to put her best foot forward to raise awareness of dementia. On 14 January 2019, three years after Kingsley died, the 56-year-old retired legal professional set out from her home in Pennard on the south Gower peninsular with a 20kg knapsack strapped to her back. Just over a year later the pandemic struck, the country was placed under lock down and she was forced to alter her plans, returning home before setting off in permissible directions.Karen says the darkest months were in Northern Scotland. “Part of the learning curve has been learning to cope with loneliness,” she says. “There are days that have been very hard, when you wake up questioning ‘why am I doing this, it's hideous outside and I haven't seen a soul for days”. But she persevered, powered on by the support of hundreds of people she met on the walk, some of whom were living with Alzheimer's, and some of whom joined her for a few miles. See acast.com/privacy for privacy and opt-out information.

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 See acast.com/privacy for privacy and opt-out information.

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. See acast.com/privacy for privacy and opt-out information.

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”. See acast.com/privacy for privacy and opt-out information.

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. See acast.com/privacy for privacy and opt-out information.

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”. See acast.com/privacy for privacy and opt-out information.

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. See acast.com/privacy for privacy and opt-out information.

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”. See acast.com/privacy for privacy and opt-out information.

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 See acast.com/privacy for privacy and opt-out information.

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. See acast.com/privacy for privacy and opt-out information.

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”. See acast.com/privacy for privacy and opt-out information.

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”. See acast.com/privacy for privacy and opt-out information.

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.https://www.alzheimers.org.uk/ See acast.com/privacy for privacy and opt-out information.

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.” See acast.com/privacy for privacy and opt-out information.

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. See acast.com/privacy for privacy and opt-out information.

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. See acast.com/privacy for privacy and opt-out information.

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 atwww.jennidutton.com/dementiadarnings and on Instagram at Jenni Dutton 9342 https://www.instagram.com/jennidutton9342/?hl=en See acast.com/privacy for privacy and opt-out information.

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. See acast.com/privacy for privacy and opt-out information.

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. See acast.com/privacy for privacy and opt-out information.

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 See acast.com/privacy for privacy and opt-out information.