Reclaiming Agency: Living Beyond Dementia

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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 She’s here to shake things up, challenge the world’s outdated views on dementia, and show us why living well with this diagnosis is not just possible, but a right.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 International

World Health Organization Dementia Resources

If 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 prepa

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Music composer: Ania Reynolds - https://www.aniareynolds.com/