Well I Know Now with Pippa Kelly

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”.

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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. 

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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. 

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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.

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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-house

The book Pippa mentioned, by Peter Berry & Deb Bunt, is called Slow Puncture: Living Well With Dementia, and is available from Amazon. 

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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.

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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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