In this moving and deeply insightful episode, Andy Baker is joined by Jenny Clark, who shares her powerful journey of supporting her sister Liz, who had Down’s syndrome and was later diagnosed with young onset dementia. This conversation is a heartfelt look at the realities of caregiving, family advocacy, and navigating health and social care systems when your loved one doesn’t fit the typical mould.
Whether you're a parent, carer, educator, or health professional, Jenny's story sheds light on the intersection of learning disability and dementia, highlighting the gaps, the grief, and the deep love that fuels family-led support.
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🧰 Resources & Links Mentioned:
Young Dementia Network: https://www.youngdementianetwork.org
Down’s Syndrome Association: https://www.downs-syndrome.org.uk
DEEP – Dementia Engagement and Empowerment Project: https://www.dementiavoices.org.uk
Management systems, audit and training www.elliem.co.uk
💡 Three Key Messages:
Diagnosis is not the end – it's a transition.
Jenny describes how a diagnosis of dementia in someone with Down’s syndrome is often misunderstood or delayed. Her story challenges professionals to see the person, not just the condition.
Family advocacy is vital and exhausting.
Jenny’s commitment to Liz’s dignity highlights the emotional toll – and strength – of sibling carers. Advocacy isn’t always loud; sometimes it’s persistent, quiet love.
We need better systems, not better families.
Jenny outlines how disjointed services and undertrained professionals left gaps in Liz’s care. It's a call for systemic change, not just individual heroics.
⏱️ Episode Chapters & Timestamps:
00:00 – Welcome and introduction
03:05 – Meet Jenny and the story of her sister Liz
07:40 – Early signs of dementia in someone with Down’s syndrome
12:55 – Diagnosis challenges and assumptions in services
18:30 – Being a sibling carer: identity, grief, and resilience
25:15 – Fighting for better care and dignity
33:45 – The emotional toll of navigating the system
39:10 – Reflections on what needs to change
45:00 – Jenny’s message for carers, educators, and professionals
49:30 – Final thoughts and resources
🎧 Why Listen to This Episode?
If you support someone with a learning disability, this episode will help you spot the early signs of young onset dementia.
If you are a sibling carer, Jenny’s story offers validation, support, and solidarity.
If you work in health, education or social care, this episode highlights the vital need for person-centred thinking and joined-up support.
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