165: The 'D' Word with Pete Hill - Episode 165165: The 'D' Word with Pete Hill - Episode 165
UK Health Radio Podcast
Host Pete Hill talks with dementia advocate and author Julie Hayden about her experience of young onset dementia, from delayed diagnosis to finding purpose and community. Their conversation touches on person-centred care, realistic hope, peer support and the role of humour in living beyond a diagnosis.
36:57•24 Apr 2026
Living Beyond Diagnosis: Julie Hayden on Young Onset Dementia
Episode Overview
- Timely and accurate diagnosis is crucial, as years of uncertainty can lead to severe personal, financial and health consequences.
- Support should be genuinely person-centred, focusing on the individual and their specific challenges rather than a generic dementia label.
- Having a sense of purpose and occupation after diagnosis can transform life from a story of loss into one of contribution and meaning.
- Peer support groups where people with dementia lead the conversation can be far more helpful than activity-based sessions decided by others.
- Realistic hope, honest information and humour are more helpful than false promises about miracle cures or quick fixes.
“It’s only when you know what you’re facing that you can move forward.”
What can we learn from those who have battled dementia first-hand? This conversation on UK Health Radio’s The ‘D’ Word brings together host Pete Hill and guest Julie Hayden, a former nurse and social worker who was eventually diagnosed with young onset dementia. Aimed at anyone affected by dementia – whether personally, professionally, or as a family member – the chat cuts through myths and confusion.
Julie explains how it took more than five years to get a diagnosis, being told it was depression or menopause before anyone considered dementia. During that time she lost her career, her home, and ended up in a psychiatric unit before scans finally showed cerebral atrophy. As Pete quotes from her book, “it’s only when you know what you’re facing that you can move forward”.
You’ll hear Julie talk about how existing support groups were geared towards much older people, so she started a young onset group herself. That led to working with universities, charities and other advocates. Her book, *Living with Young Onset Dementia*, blends poetry, information and graphics, illustrated by American digital artist Daisy Best, and is aimed at people coming to terms with a diagnosis.
Key themes run through their chat: proper person-centred care (“we’re not just dealing with a dementia, we’re dealing with Julie”), the importance of purpose and occupation, and the value of peer support groups where people with dementia shape the agenda instead of being treated like passive recipients of care. Julie also calls out false hope around miracle drugs, arguing that realistic hope and practical support matter more.
There are lighter moments too, as she shares how losing the butter under her armchair became a story to laugh at rather than cry over. Her message is clear: people can live beyond a diagnosis, and their voices should sit at the heart of dementia services and research. If dementia touches your life in any way, could this be the honest conversation you’ve been needing?
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