41 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
    • 4.8 • 39 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.
See acast.com/privacy for privacy and opt-out information.

    Suzy Webster

    Suzy Webster

    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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    • 55 min
    Dr Lucy Pollock

    Dr Lucy Pollock

    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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    • 57 min
    Carrie, Chris, Nathan & Alise

    Carrie, Chris, Nathan & Alise

    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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    • 53 min
    Matthew Seager

    Matthew Seager

    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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    • 53 min
    Gina Awad BEM

    Gina Awad BEM

    “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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    • 45 min
    Ian Kremer, Executive Director of LEAD Coalition

    Ian Kremer, Executive Director of LEAD Coalition

    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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    • 1 hr 1 min

Customer Reviews

4.8 out of 5
39 Ratings

39 Ratings

yyyyyyu it u ,

Incredible uplifting Dementia storied

I have found these Podcasts invaluable … as my Mother was diagnosed with Alzheimer’s 7 years ago and now lives in a Care Home and last year my Father was diagnosed with Vascular Dementia, it has been a difficult learning journey. Each story has been presented in a very uplifting way and actually leave me feeling positive, away from the depression of dealing with Dementia. Thank you Pippa … I always look forward to each new episode and recommend these to anyone who is affected by Dementia.

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.

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