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Explorez tous les épisodes du podcast My life with dementia | A Dementia UK podcast

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TitreDateDurée
“I didn’t think you could get dementia at 52” | Andy’s story18 Sep 202400:29:11

When Andy was diagnosed with young onset dementia in his early 50s, it felt like a door was suddenly slammed shut. The life he'd imagined with his partner Christine was going to look very different.


For months after his diagnosis, Andy withdrew from the world. He felt that he had no future. But over time, with the support of Christine and their dementia specialist Admiral Nurse, Andy found a purpose again. Through sporting events, campaigning and raising awareness, he wants people to see that people with dementia can still live full lives. 

 

This episode contained a reference to suicidal ideation and other themes relating to mental health. If this has caused you distress, free mental health support is available from Mind. You can call their confidential Infoline on 0300 123 3393. 



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"We've learnt to work together, for Mum" | Aqib and Shahbanu’s story18 Sep 202400:31:52

Siblings Aqib and Shahbanu care for their mum, Shama, who was diagnosed with Alzheimer's disease when she was 70 years old.   


The years following have been a steep learning curve. They have had to adopt new ways to interact with their mum. They've realised it's not always helpful to contradict her when she makes mistakes or forgets things. And they're careful not to let her feel shame over those things; or let those moments erode the trust that exists between them.  

This episode explores the ways dementia can test family dynamics, the importance of communication and how you can continually create moments of joy. 



Further resources:  



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Introducing... My life with dementia, a podcast from Dementia UK09 Sep 202400:03:00

One in two of us will be affected by dementia in our lifetime.  


In Dementia UK’s new podcast, ‘My life with dementia’, real people share their experiences of living with, caring for, or losing someone to dementia. Through their stories, presented by actor Jim Broadbent, we gain a deeper understanding of this complex condition, and the challenges faced by those affected. 


Subscribe to ‘My life with dementia’ to listen to new episodes as soon as they come out.

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“I never expected to care for Dad in my 20s” | Lizzie’s story25 Sep 202400:30:15

When it comes to father-daughter relationships, Rob and Lizzie’s couldn’t have been stronger. They shared a love for the outdoors, music and sport, and were always finding ways to make each other laugh.   


When Rob began to struggle with driving in his mid-50s, the family knew something was wrong, but the prospect of dementia didn’t cross their minds. A few years later, Rob was diagnosed with young onset frontotemporal dementia. He was 58 years old, and Lizzie was just 24.   

Lizzie suddenly found herself navigating young adulthood while also adapting to her new role as a part time carer to her dad. In this episode, she discusses the drastic change in family roles, the importance of compassion and processing the loss of her dad, who died a few months before this recording. 



Further resources:  


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"Being a husband and a carer was a big adjustment" | James's story02 Oct 202400:33:28

James's late wife Maria was diagnosed with young onset Alzheimer's disease when she was 56 years old.


As a couple, they found themselves on an unexpected path – moving through the different stages that followed her diagnosis. James tried to strike the balance between maintaining his wife’s independence while ensuring her safety. It was a balance that became increasingly difficult. 

In this episode, he shares his perspective on caring for Maria, from noticing early signs through to grappling with the move into full-time care. He also touches on the vital support he received from their dementia specialist Admiral Nurse.



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“I thought I knew what grief would feel like” | Ricky’s story09 Oct 202400:27:32

Ricky and his gran, Harbaksh, always shared a special bond. He describes her as more of a third parent than a grandmother. She lived next door, and relished being able to talk to Ricky in Punjabi.


After several frustrating appointments with health professionals, Harbaksh was diagnosed with Alzheimer's disease in her 80s. Ricky was thrust into a caring role and set about learning everything he could about her condition.

This episode touches on the difficulties many people face in getting a diagnosis of dementia, the importance of culturally tailored care and the unpredictable nature of grief.

 


Further resources:  

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"Life doesn't stop when you get your diagnosis" | Gail's story16 Oct 202400:29:31

On Valentine’s Day in 2019, Gail's world changed forever. At 54 years old, she was diagnosed with Alzheimer’s disease.


Initially, she felt numb. But in the following weeks and months, there were so many emotions – confusion, sadness and anger.  

With the help of her dementia specialist Admiral Nurse, Gail was able to shift her focus to what she can do, rather than what she can’t. She decided to pursue passions she’d always held but never pursued – photography, arts, crafts and exploring nature.


This episode is about Gail’s approach to living well with dementia and maintaining an identity beyond her diagnosis.

 


Further resources:  



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Two dementia nurses discuss Michaela’s story21 May 202500:12:46

This episode features two of Dementia UK’s Admiral Nurses – Hilda and Vic. Admiral Nurses are specialist dementia nurses, who provide free advice and support to the whole family, as well as the person with the diagnosis.


In this episode, Hilda and Vic delve deeper into some of the themes from Michaela’s story to give some extra advice and insight from their expert perspectives. They talk through the stigma that can so often stop people seeking support, the value of dementia cafes and groups, and ways to cope with grief.


If you haven’t heard Michaela’s episode yet, we recommend giving it a listen first.


Further resources:


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“Community meant everything after Nan’s diagnosis” | Michaela’s story21 May 202500:29:36

When her grandmother, Vanda, was diagnosed with vascular dementia, Michaela felt her world come crashing down. This was the woman who raised her, a role model she’d always looked up to. Feeling powerless and alone, Michaela yearned for community, and a place where dementia wasn’t taboo. A place where her nan could be herself.


When Michaela couldn’t find it, she created it. The Spring Bleau Dementia Cafe was born.


This is a story about finding strength in community after a dementia diagnosis.

 

Further resources:  

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Season two of My life with dementia14 May 202500:04:26

One in two of us will be affected by dementia in our lifetime.

  

In Dementia UK’s podcast, ‘My life with dementia’, real people share their experiences of living with, caring for, or losing someone to dementia. Through their stories, presented by award-winning journalist and Dementia UK Ambassador Marianne Jones, we gain a deeper understanding of this complex condition, and the challenges faced by those affected.


Subscribe to ‘My life with dementia’ to listen to new episodes as soon as they come out.

Hosted on Acast. See acast.com/privacy for more information.

"I agonised over Mum's move into full-time care" | Penny's story25 Jun 202500:33:24

Growing up, Penny didn’t have to look far for her hero. It was Rosemary – her mum.

 

Rosemary had a confidence about herself. A warmth and kindness for others. And a smile that lit up a room. She taught Penny to believe in herself, to try things and see things.


In 2016, Rosemary was diagnosed with mixed dementia. For the past eight years, Penny has been her mum’s primary carer. And while there have been plenty of heartbreaking moments, the hardest came when Penny had to move Rosemary into a care home.

 

Further resources:  

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Two dementia nurses discuss Penny's story25 Jun 202500:14:50

This episode features two of Dementia UK’s Admiral Nurses – Hilda and Vic. Admiral Nurses are specialist dementia nurses who provide free advice and support to the whole family, as well as the person with the diagnosis.

  

In this episode, Hilda and Vic delve deeper into some of the themes from Penny’s story to give some extra advice and insight from their expert perspectives. They discuss what to look for in a care home, offer advice on coping with feelings of guilt, and explain the importance of life story work.

 

If you haven’t heard Penny’s episode yet, we recommend giving it a listen first.

 

Further resources:

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“I was pushed into retirement after my diagnosis” | Phil’s story18 Jun 202500:26:33

A registered nurse for over 40 years, Phil found his dream role in lecturing graduate and undergraduate nurses at a university. In teaching, he had found his calling.


In 2015, Phil began to notice he was forgetting names. Sometimes he would enter a room and forget why he was there. As his symptoms became more pronounced over the following year, an initial diagnosis of mild cognitive impairment was changed to dementia with Lewy bodies.


After initially having the full support of his employer, Phil saw firsthand the lack of understanding once the word ‘dementia’ entered the equation. He has since dedicated himself to ensuring people understand their rights when it comes to the crossover between work and dementia.

 

Further resources:  

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Two dementia nurses discuss Phil's story18 Jun 202500:13:37

This episode features two of Dementia UK’s Admiral Nurses – Hilda and Vic. Admiral Nurses are specialist dementia nurses who provide free advice and support to the whole family, as well as the person with the diagnosis.

  

In this episode, Hilda and Vic delve deeper into some of the themes from Phil’s story to give some extra advice and insight from their expert perspectives. They share guidance on how to tell your employer about a dementia diagnosis, reasonable adjustments that can be made in the workplace, the benefits of occupational health assessments, and life after retirement.

 

If you haven’t heard Phil’s episode yet, we recommend giving it a listen first.

 

Further resources:

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"Caring for Mum and Dad drove me to breaking point" | Chris's story11 Jun 202500:31:34

Over the span of a decade, Chris cared for his parents, who both had dementia.


An only child with very little extended family, Chris assumed the role of primary carer without much discussion. He juggled parenting his own son, working full-time in the emergency services, and his caregiving role. And eventually, he reached breaking point.


In this episode, he talks about the constant battle with a system that was supposed to support him, and the importance of looking after yourself as a carer.

 

Further resources:

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Two dementia nurses discuss Chris's story11 Jun 202500:12:56

This episode features two of Dementia UK’s Admiral Nurses – Hilda and Vic. Admiral Nurses are specialist dementia nurses who provide free advice and support to the whole family, as well as the person with the diagnosis.


In this episode, Hilda and Vic delve deeper into some of the themes from Chris’s story to give some extra advice and insight from their expert perspectives. They explore what chronic stress looks like, the role of a 'sandwich carer' and how respite care can offer much-needed support.

 

If you haven’t heard Chris’s episode yet, we recommend giving it a listen first.

 

Further resources:

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Two dementia nurses discuss Julie's story04 Jun 202500:12:29

This episode features two of Dementia UK’s Admiral Nurses – Hilda and Vic. Admiral Nurses are specialist dementia nurses, who provide free advice and support to the whole family, as well as the person with the diagnosis.


In this episode, Hilda and Vic delve deeper into some of the themes from Julie’s story to give some extra advice and insight from their expert perspectives. They share practical advice for living alone with dementia, the importance of finding purpose in every day life, and the often overlooked value of occupational therapy.


If you haven’t heard Julie’s episode yet, we recommend giving it a listen first.


Further resources:   


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"I live alone, and I have dementia" | Julie's story04 Jun 202500:20:16

Julie received her dementia diagnosis at just 54 years old. In the space of a few minutes, the doctor delivered the news, handed her a medication prescription and said goodbye. Julie felt so overcome with shock that she burst into tears.


Julie lives on her own, and doesn’t have family members to care for her. It’s a situation many people with dementia find themselves in. She has found purpose in advocating for this community.


In this episode, Julie talks about maintaining her independence while living with dementia, finding the courage to ask for help, and the importance of amplifying the voices of people with lived experience.

 

Further resources:  

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Two dementia nurses discuss George's story28 May 202500:14:46

This episode features two of Dementia UK’s Admiral Nurses – Hilda and Vic. Admiral Nurses are specialist dementia nurses, who provide free advice and support to the whole family, as well as the person with the diagnosis.


In this episode, Hilda and Vic delve deeper into some of the themes from George’s story to give some extra advice and insight from their expert perspectives. They talk about the changing family dynamics after a dementia diagnosis, the importance of setting up a lasting power of attorney and the value of peer support groups.


If you haven’t heard George’s episode yet, give it a listen first.


Further resources:  

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"Mum's dementia has brought our family closer" | George's story28 May 202500:31:46

George's mum Linda was diagnosed with Alzheimer’s disease when she was just 57. George was 22 at the time.


The years since have been characterised by adjustment. He's seen his dad become a full-time carer, and has supported his parents through some huge changes in how and even where they live.


In this episode, George shares his experience of being thrust into the role of a young carer, and the emotional journey that has followed.

 

Further resources:  

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Becoming young carers in our teens: Chloe and Amy’s story of young onset dementia21 Apr 202600:34:07

Chloe and Amy were just 12 and 18 when their mum Sarah began showing symptoms of young onset dementia. Becoming young carers for a parent with dementia and coming to terms with their mum’s diagnosis was something they had never imagined.


This is a story of a family pulling together under incredibly challenging circumstances, supporting each other to juggle work, school and looking after Mum.


Chloe and Amy’s dementia story will resonate with families who are navigating a dementia diagnosis while trying to hold on to everyday life.


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Season three of My life with dementia14 Apr 202600:02:36

One in two of us will be affected by dementia in our lifetime, and at Dementia UK, we believe no one should face it alone.

 

That’s why we created this award-winning podcast.

 

Hear first-hand dementia stories from people living with the condition, alongside life-changing advice from our dementia specialist Admiral Nurses.

 

Whether you’re a carer or young carer, living with a dementia diagnosis, worried about symptoms like memory loss or simply want to share your experiences, why not visit our website to find out how we can support you? dementiauk.org/podcast-support

 

‘My life with dementia’ is hosted by Ted Lasso’s Kola Bokinni. The series is produced by Arlie Adlington.

 

Dementia UK: helping families face dementia.

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Siblings, school and emotional strain: how Admiral Nurses can support young carers for a relative with dementia23 Apr 202600:16:16

Hilda and Vic go deeper into some of the themes from Chloe and Amy's dementia story, explaining what families can do next from their perspectives as dementia specialist Admiral Nurses.


They cover:


  • how schools can support young carers
  • the importance of counselling to help young carers manage the emotional strain of looking after someone with a dementia diagnosis
  • how Admiral Nurses can help families prepare for the future through advance care planning, including lasting power of attorney


If you haven't heard Chloe and Amy’s episode yet, we recommend giving it a listen first. You'll find it right next to this one in your podcast feed.


Support and resources:



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Coping with aggression and change in dementia: how Admiral Nurses can offer practical and emotional support to carers30 Apr 202600:15:48

Hilda and Vic discuss Jules's dementia story, sharing advice and insight drawing on their clinical experience as dementia specialist Admiral Nurses.


In this episode they explore:


  • how to manage if the person you’re caring for becomes angry or aggressive
  • how to cope when multiple family members are living with dementia at the same time
  • how to create joyful memories even as someone’s dementia is progressing


If you haven't heard Jules’s episode yet, we recommend giving it a listen first. You'll find it right next to this one in your podcast feed.


Support and resources:


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Anger, turbulence and joy in dementia: Jules’s story of caring for her family28 Apr 202600:32:50

When Jules's uncle started showing symptoms of dementia, she had no idea that soon she'd be caring for multiple family members, who all received a dementia diagnosis around the same time.


In this episode, Jules discusses some of the more challenging symptoms of dementia, such as aggression, and her dedication to keeping her family safe and happy.


Jules’s dementia story offers comfort to anyone facing the challenges of dementia, while reminding us that joy is still possible.


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