Living with Young Onset Dementia: Karen Thomas on Change & Care

In this episode of the Able to Care Podcast, host Andy Baker speaks with Karen Thomas, Head of Young Onset at Dementia Forward. Karen shares her journey from volunteer to shaping specialist services that meet the unique needs of people diagnosed under 65. Together, they explore the realities of young onset dementia—from identity and employment struggles to financial challenges, family dynamics, and the living loss carers face daily. Karen also introduces the You and Me campaign, the Young Onset Dementia Awareness Day, and the upcoming 2025 national conference designed to bring professionals, carers, and families together to change systems and perceptions. This is a powerful, practical, and deeply human conversation that sheds light on a misunderstood condition. 💙 Sponsored by Carers Card UK The Able to Care Podcast is proudly sponsored by Carers Card UK – the UK’s number one carers card. For less than the price of a box of chocolates a year, carers can access: An official ID card with emergency information Discounts on gyms, days out, tech, clothing, glasses & more A wellbeing hub and Carers Circle tool A supportive community through their app 👉 🎟️ Order your card today 🔗 Resources & Links Mentioned Dementia Forward – dementiaforward.org.uk You and Me Campaign & Awareness Day – YouTube: You and Me Song (insert link once confirmed) Young Onset Dementia Conference – October 14, 2025 – Conference Info Andy Baker’s Book: Targeting the Positive with Behaviours That Challenge 🧠 Three Key Messages Young onset dementia is different – People diagnosed under 65 face unique challenges with identity, finances, and family roles that require tailored support. Community and creativity matter – From outward-bound groups to music, poetry, and campaigns, connection and self-expression are vital for wellbeing. Awareness creates change – Recognition, coding in the healthcare system, and workplace understanding can transform lives and reduce isolation. ⏱️ Chapter Timestamps 00:00 – Sponsor: Carers Card UK 01:48 – Introducing Karen Thomas & her journey into dementia care 04:59 – What young onset dementia is and why it’s different 07:47 – Identity, work, and family challenges 10:09 – The impact of friendships fading and social isolation 13:03 – The courage and resilience of families 14:22 – Creating Time Out Together groups and filling service gaps 18:28 – Long diagnosis delays and systemic challenges 22:28 – Dementia Forward’s three-level approach: individual, community, national 26:38 – The You and Me campaign and Young Onset Dementia Awareness Day 29:21 – The upcoming 2025 national conference 34:05 – What ideal support and provisions should look like 36:00 – Tackling myths, stigma, and workplace discrimination 43:45 – Person-centred vs. people-centred care: why it matters 45:21 – Building training to change professional practice 49:55 – A heartbreaking but hopeful family story 55:00 – How communities can support people with young onset dementia 🎯 Why Listen to This Episode This episode is essential listening for carers, teachers, health professionals, and families seeking to better understand young onset dementia. Karen Thomas shares inspiring stories, systemic challenges, and hopeful initiatives that prove life with young onset dementia can still be rich, meaningful, and connected. You’ll come away with a deeper awareness, practical insights, and clear ways to support both individuals and carers. Connect with Us 📲 Instagram: @AbleTraining 📲 LinkedIn: Able Training 📲 TikTok: @AbleToCarePodcast 🌐 Website: AbleHub.uk