My life with dementia – a Dementia UK podcast

The episodes

Episode one: “We’ve learnt to work together, for Mum” – Aqib and Shahbanu’s story

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 create moments of joy.

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Read their transcript

Episode two: “I didn’t think you could get dementia at 52” – Andy’s story

When Andy was diagnosed with young onset dementia in his early 50s, it felt like a door was suddenly slammed shut. He knew the future he had imagined for himself and his partner Christine would 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.

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Read their transcript

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.

Episode three: “I never expected to care for Dad in my 20s” – Lizzie’s story

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, Lizzie discusses how the diagnosis led to drastic changes in family roles, why compassion was so important, and how she is coping with her grief for her dad, who died a few months before this recording.

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Read Lizzie’s transcript

Episode four: “Being a husband and a carer was a big adjustment” – James’s story

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.

James’s episode will be published on 2nd October 2024

Episode five: “I thought I knew what grief would feel like” – Ricky’s story

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.

Ricky’s episode will be published on 9th October 2024

Episode six: “Life doesn’t stop when you get your diagnosis” – Gail’s story

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.

Gail’s episode will be published on 16th October 2024