Reclaiming Agency: Living Beyond Dementia

Ever been told to just give up and prepare to die after a diagnosis? What if I told you that’s the standard script handed to people with dementia — and it’s completely wrong? Today, I’m chatting with Kate Swaffer, a powerhouse who refused to accept that narrative. She’s here to shake things up, challenge the world’s outdated views on dementia, and show us why living well with this diagnosis is not just possible, but a right.In this episode of Don't Be Caught Dead, Kate opens up about her own journey living with young onset dementia and how she rewrote the rules on what it means to be diagnosed. From the crushing “prescribed disengagement” she was offered, to founding Dementia Alliance International to give people with dementia a real voice — Kate’s story is raw, honest, and full of fire. We also dive deep into the institutional failings, the stigma that refuses to budge, and the urgent need to flip the script on how society supports people facing this diagnosis.Kate makes it clear that dementia absolutely doesn’t mean you’re done or that death is all that’s left. Instead, it’s about reclaiming agency, demanding disability rights, and pushing for actual change — not just fundraising buzzwords. We talk about the importance of tough conversations about death at any age, raising awareness, and what real support looks like for people with dementia and their loved ones. This convo will inspire you to face death head-on — not with fear, but with preparation and purpose.Key points from our discussion:Kate's journey from healthcare professional to dementia activist.What “prescribed disengagement” means and why it's so harmful.The huge disconnect between dementia care and care for other disabilities.Why we desperately need open talks on death and dying from a young age.How we all can better support people living with dementia.Resources Mentioned:Dementia Alliance InternationalWorld Health Organization Dementia ResourcesIf you enjoyed this episode, please let us know! Share your thoughts, subscribe, and help us spread the word about the importance of discussing death openly.Remember; You may not be ready to die, but at least you can be prepared.Take care,CatherineWe'd love to hear from you. Send us a text :-)Death is hard, make death admin easy with the Critical Info Platform. It’s a simple, secure system that helps you prepare and share your legacy, wishes and personal paperwork.It’s packed with prompts, guides and even a To Do List to help you easily gather critical information for a complete end-of-life plan.Leave behind a legacy, not a mess.Sign up now to your free trial at critical info.com.auNo credit card needed. Every Tuesday at 7pm, I host Critical Chat Tuesdays — free, online conversations where you can ask questions or just listen.No pressure. No expectation.Because this isn’t about planning for “someday” — it’s about being ready for whatever life throws your way.Join anytime at criticalinfo.com.au/events MY LOVED ONE HAS DIED, WHAT DO I DO NOW?Our guide, ‘My Loved One Has Died, What Do I Do Now?’ provides practical steps for the hours and days after a loved one's death. Download it here.SUPPORT SERVICESIf you're feeling overwhelmed by grief, find support through our resources and bereavement services here.Support the showSupport the 'Don’t Be Caught Dead' podcast with a one-off or regular donation to help Critical Info, a certified social enterprise, keep creating free, high-impact conversations about death, grief and planning—every contribution fuels our mission to reduce the burden on families and build a more death-literate, compassionate community. Donate here now.Learn more: https://criticalinfo.com.au/Connect with Don't Be Caught Dead podcast host Catherine Ashton & Critical info on socials:https://linktr.ee/catherine_critical_info?utm_source=linktree_profile_share&ltsid=c1879300-84db-4c70-9270-18d17d3ec22aMusic composer: Ania Reynolds - https://www.aniareynolds.com/