163: The 'D' Word with Pete Hill - Episode 163

163: The 'D' Word with Pete Hill - Episode 163

How do people find hope in the darkest times? This conversation between host Pete Hill and guest Michael Booth gives a moving answer through the lens of young-onset dementia and creativity. Michael shares how dementia first entered his life when his granddad, then his mum at just 55, were diagnosed. Six or seven months after his mum died, he received his own diagnosis of young-onset dementia at 46.

Thanks to his links with memory services, he was diagnosed in around eighteen months, but he’s very clear that, for many people his age, “they do look at everything else first before they diagnose you.” From there, the chat shifts to his murder mystery novel, *Forget Me Not: The Letter in the Headboard*. Instead of writing a straight memoir, Michael wanted to “educate people of what it’s like to live with dementia without them realising they’re being educated”.

The lead character, Moira, is a female, ex-military police version of him, living with dementia while helping solve a murder she might even have committed and forgotten. He talks about the emotional graft of putting his own symptoms into Moira’s life, including mobility issues, memory gaps, changes in taste and an episode of delirium. You’ll also hear about the crucial bond between Moira and her friend-carer Trina, reflecting the partnership Michael values with his own wife.

There’s humour too; he argues that laughing at lost keys in the fridge or other mishaps can make dementia “liveable” and stop everything feeling relentlessly bleak. Later, Michael and Pete talk about genuine co-production in dementia services, from training that actually involves people with dementia to Michael’s role in designing a dementia village in Hartlepool. Anyone curious about dementia, young-onset diagnosis or how creativity can shift stigma will find plenty to think about here.

It might even make you ask: whose real-life experience is missing from the rooms where decisions are made?