16 episodes

Well I Know Now with Pippa Kelly is a podcast in which she and her guests discuss what their dementia experiences have taught them. From profound life lessons to the importance of professionals who truly understand and the joy to be found in the smallest things.
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Well I Know Now with Pippa Kelly Pippa Kelly

    • Health & Fitness
    • 4.9 • 32 Ratings

Well I Know Now with Pippa Kelly is a podcast in which she and her guests discuss what their dementia experiences have taught them. From profound life lessons to the importance of professionals who truly understand and the joy to be found in the smallest things.
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    Sarah Reed

    Sarah Reed

    Sarah Reed was an award-winning creative producer and single mother of two, when two events shattered her world. 
    The first was a brush with death when a burst appendix left her unconscious for nine hours in A & E, followed by a four-day stint in intensive care. Four weeks later her dad called to say that her mum, Mary, had been diagnosed with Alzheimer’s disease.  Sarah describes this as one of the worst days of her life.
    Before the diagnosis she and her mum hadn’t been that close; Sarah had left their home in Faversham, Kent for art school at 16, since when her life had been busy, revolving around her demanding film work and bringing up her children.
    Over the next decade, as Mary’s dementia progressed, a newfound bond developed between them. “We learnt a new, more grown-up confidence with one another”, says Sarah. “And learnt how to laugh at our shortcomings”. Sarah and her siblings supported their parents as best they could but their father struggled to cope and in 2000 Mary moved into a care home. 
    Sarah soon realised that while kindly and well-meaning, the staff had little or no communication training – and her frustration developed into a passion to try to help carers provide better care. Over the course of the next few years, as her dad died and her mum was forced to move care homes, twice, Sarah’s knowledge of dementia grew and with it a belief that staff couldn’t hope to develop a relationship with their charges if they didn’t know anything about them, and in order to find out about them they needed to be able to communicate with them. Sarah decided to act. 
    At a personal level she compiled an album of photographs from her mother’s early childhood right through to her years as a great grandmother. When Mary saw the album she glowed with pleasure – although confused by the present, her mum was brought alive by the past.
    And thus the idea for Sarah’s award-winning Many Happy Returns Chatterbox Cards was conceived. Painstaking research into not just dementia, but compassion, philosophy and reminiscence therapy, led to cards skilfully designed to prompt conversations with older people. Two thousand cards based around the 1940s were launched in 2008. The sets sold out in three months. Today, some 9,000 sets – of 1940s and ‘50s cards – can be found in care settings, libraries, schools and private homes around the UK. 
    Sarah went on to develop interactive communication workshops to help care staff communicate more meaningfully with residents. She believes that “Good communication sits at both the heart and pinnacle of good care”.  
    Mary died in 2009, aged 92.  Dementia may have taken her mum from her, but Sarah tells me that it also, in a way, gave back. “Caring for a loved one helps teach you a love you did not know was possible”, she says. “It’s a feeling of understanding, forgiveness and, eventually, closure”. 


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    • 51 min
    Mike Parish

    Mike Parish

    Mike Parish has been with his partner Tom Hughes for 45 years. Theirs is a love story, and I’ve found researching their lives, witnessing the tenderness, concern and pride that flows between them – very moving. And a reminder of the beauty to be found in us flawed human beings.
    But their story also has an ugly side. For much of their lives these two individuals have been the victims of prejudice, rejection, violence even. One of them still bears the visible scars. The unseen, emotional cuts run deeper still and have lingering consequences. 
    Five years ago Tom was diagnosed with dementia and so, in different ways, they find themselves yet again confronted with discrimination. It’s not aggressive this time, or even intentional. But it’s there, in the preconceptions voiced as they attend countless medical and social care appointments, where they are routinely assumed to be father and son or a carer and his charge. In constantly explaining who and what they are they face a sort of endless coming out.
    I would love to have chatted to both men, but Tom is now non-verbal and in these strange Covid-19 times it simply didn’t work when we tried to include him in the podcast. It is so sad, but it reveals the stark truth about dementia: it’s a progressive disease, and there’s no getting round that.
    But as Mike and I talk, Tom is never far away. Mike says he and Tom are true soul mates, telling me about the Greek myth that lies behind the phrase – that we humans were originally created with four arms, four legs and a head with two faces. But Zeus split us in two, so we’re all searching for our other half. To complete us. 
    “I was struck by the power of that myth,” Mike says. “When the two halves meet there is an unspoken understanding of one another, they’re unified and know no greater joy. This was what we both felt when we met, and still do”.  I can see it when I watch the pair of them and hear it as Mike speaks of Tom.
    Just four years ago, in 2016, the two men married. Strange, almost unbelievable to think, that when they first moved in together in 1975, aged 20, they were living illegally. Eight years earlier their very sexuality, their gayness, was deemed a criminal offence. 
    In 2015 Tom was diagnosed with HIV-associated neurocognitive disorder, or HAND, a very rare form of dementia. Soon afterwards Mike gave up his job with the fire brigade to care for him, experiencing what he describes as a tsunami of shock and grief.  
    It’s been through telling their story that he and Tom have found a way to move on. They started by sharing their experiences with dementia support groups and were soon invited onto national television and radio, and to speak at universities, hospitals, care homes. Being a same-sex couple experiencing dementia proved relatively rare and Mike felt a responsibility to reach out to others. It turned out to be of huge benefit to all.
    “There’s a powerful positive outcome from storytelling,” says Mike. “It comes from the hope that what you’re doing may help others and it also gives a sense of normalisation, validation and the strength to carry on”. 


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    • 47 min
    Kate Lee

    Kate Lee

    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/


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    • 42 min
    Nicci Gerrard

    Nicci Gerrard

    Author, journalist and campaigner Nicci Gerrard is a pocket dynamo of warmth and energy.  She speaks quickly, her lyrical, thought-provoking words tumbling out of her mouth, compelling us to see things in new and different ways.  
    In 2014 she co-founded John’s Campaign with Julia Jones. Its aim is simple: “that the carers of those with dementia should have the same rights as the parents of sick children to accompany them to hospital” and its inspiration came from her late father, the doctor and scientist John Gerrard. 
    For ten years John, who had a deep love of nature, lived well with dementia. “He was”, says Nicci, “going gradually into the darkness”.  But this ended with a “sudden rupture” when John went into hospital with leg ulcers and remained there for five weeks. Strict visiting hours, plus an outbreak of norovirus, meant that this man, who’d entered healthy, mobile, articulate and contented, emerged skeletal, immobile, inarticulate, unable to recognise people he’d lived with for decades.  
    John’s experiences and the resulting campaign led Nicci to explore dementia practically, through talking to doctors, carers and those living with it, and more profoundly, in philosophical, almost existential ways.  
    The result is her quite beautiful book, What Dementia Teaches us About Love. “What happens when memories are lost? Who are we then?” she writes. “If we are out of our mind, where have we gone? If we have lost the plot, what happens to the story we are in?”
    Most recently, as Coronavirus has swept across the globe and the doors of this country’s 21,000 care homes have clanged shut, John’s Campaign has turned its attention to those who live in them, 70 per cent of whom have dementia. Their relatives have been unable to visit them for months, leaving these vulnerable people bewildered and heartbroken because they think they’ve been abandoned by those they love. 
    Which is why John’s Campaign asked the Government to review the guidance around care homes. Family carers, say Nicci and her fellow campaigners, are not visitors but vital to the health and selfhood of people with dementia, and should be recognised as such, and given the same protection, testing and status as key workers.
    “In the name of infection control, great harm is being inflicted,” Nicci wrote recently in the Guardian. “People can die of heartbreak.” 



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    • 43 min
    Dr Jennifer Bute

    Dr Jennifer Bute

    Dr Jennifer Bute regards the dementia with which she was diagnosed in 2009 not as a life-shattering disaster but a gift – to use her words, “a glorious opportunity”. She is a remarkable individual who, despite facing many adversities, and supported by her strong Christian Faith, remains brimming with hope and gratitude.  
    It is a sign of her fortitude and determination that she was the first woman in Hampshire to become a Fellow of the Royal College of General Practitioners – and this when she was already beginning to display symptoms of Alzheimer’s disease. 
    She says that her condition has enriched her life because she now knows the condition, not just as a professional, or as a relative (her father also lived with dementia) but from the inside. In 2018 her book, Dementia From The Inside, A Doctor’s Personal Journey of Hope, was published and is available from Amazon in paperback and Kindle https://www.amazon.co.uk/Dementia-Inside-doctors-personal-journey/dp/0281080690/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=&sr=. 
    Her website http://www.gloriousopportunity.org/ contains a myriad of resources, including information on the fascinating Japanese Memory Groups that she runs at the dementia-inclusive retirement village where she lives in Somerset. Dr Bute also has a Facebook page, again called Glorious Opportunityhttps://www.facebook.com/gloriousopportunity.


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    • 46 min
    Professor Sube Banerjee

    Professor Sube Banerjee

    Professor Sube Banerjee is that rare beast: an esteemed clinician and academic with a tremendous way with words and bucketloads of empathy.
    Last year he was appointed Executive Dean of Plymouth University’s cross-disciplinary Health Faculty, where along with his many other responsibilities, he jointly heads up Radio Me, a ground-breaking project that uses artificial intelligence to tailor live radio to an individual’s needs. 
    Previously, while Professor of Dementia and Associate Dean at Brighton and Sussex Medical School, he led research into the quality of life and care of those with dementia. “We have to focus on what individuals can do”, he says, “not what they can’t. Kindness is the core. And hope. I sell hope”.  
    Professor Banerjee also pioneered a world-leading education programme in which healthcare students regularly visit and talk to families of people with dementia to gain a deeper understanding of the long-term impact of the care that they themselves – as future doctors, nurses, occupational therapists, physios – will deliver. 
    In 2008, he led the development of the country’s first national dementia strategy – a huge step towards changing the way the condition is viewed, by both Government and public. The professor was determined that it should be crafted and informed by those who really understand dementia, that is the people living with, and affected by it. Today, this approach is becoming more common. In 2008-2009, it was nye on revolutionary.
     Professor Banerjee describes dementia as the prime exemplar, globally, of the complexity of challenges facing health services of all sorts. I totally agree, which is why I was so keen to talk to this warm, articulate professional. I hope you enjoy listening to him as much as I enjoyed (virtually) meeting him.


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    • 39 min

Customer Reviews

4.9 out of 5
32 Ratings

32 Ratings

Ken Lantello ,

Crushing the myths

When my late mother was diagnosed with dementia 11 years ago, awareness of the disease was at a premium. Podcasts like this are invaluable and show how far we’ve come, thanks to people like Pippa, Chris Roberts and Jayne Gooderick. There’s still a long way to go and podcasts like this should be prescribed for everyone whose life is touched by dementia.

SalCunningham ,

Honest and inspiring

I don’t often listen to longer podcasts but these totally held my attention! Pippa creates a create sense of safety as well as genuine curiosity to know more, so the conversations flow. Both these podcasts are dementia love stories with hard truths, but core message of hope, resilience and humanity.

john n Nula ,

Review

Beyond moving - such a wonderful sharing by Chris and Jayne into their world of accepting and dealing with dementia - I loved their honesty. In tears - thank you thank you - sending you both massive hugs and tons of love 💚💚💚

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