• 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”.  

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  • 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.

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  • 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.

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  • 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. 

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  • “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”. 

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  • 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”.

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  • 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. 

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  • 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.net

    Dementia Carers Count, a charity who support families and friends caring for someone with dementia, dementiacarers.org.uk

    Dementia 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.org

    The Alzheimer’s Society, www.alzheimers.org.uk

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  • 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”.

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  • 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.

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  • 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. 

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  • 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”.  

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  • 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. 

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  • 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.

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  • 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.

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  • 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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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