Today we’re revisiting a powerful conversation that first aired in February 2021, when DAI member Theresa Flavin joined Dr. Anna Samecki on the NPS MedicineWise Podcast (Episode 22). Theresa’s words remain deeply relevant to ongoing discussions about dignity, safety, and person-centred care in dementia support.
A conversation that still resonates
In this episode, Theresa, who has been living with dementia for many years, offers a compassionate look at what it’s like to experience dementia “from the inside.” The two discuss several themes including how dementia affects everyday life, autonomy around medication, advice for health professionals and more.
She challenges assumptions about “behaviours” displayed by people living with dementia and reframes them-
“From the inside, how it actually feels is that you've lost everything that makes you you. You've lost your career. You've lost your position in the family. You've lost your autonomy. You can't drive anywhere. You don't have any money. You don't have anything really, except for your ability to still live and breathe. So it's essentially like being put in prison for a crime that you didn't commit.
…
When your brain is broken, your brain will try really hard to express what it needs to express. But if the path from, ‘I feel fear’, to the words, “I feel fear”, is broken, you might just get, “I hate you”,... as the brain is trying really hard to express something. And I think it's like a train where the train tracks are a bit broken. The bridge between the feeling and the expression is gone. So I wouldn't call what we're discussing today as changed behaviours. I would probably prefer to call it changed expression. The expression you get on the outside doesn't always reflect what you feel on the inside, but very likely it expresses pain.”
Why it Matters
Today Theresa’s insights feel more vital than ever. Around the world, advocacy continues for the rights and autonomy of people with dementia, and for care systems that see the person — not just the diagnosis. Her call for compassion, communication, and safety remains a guiding light for health professionals, care partners, and policy makers alike. Because, as Theresa shows so clearly, the most powerful experts on dementia are the people living with it.
Listen to the full episode
You can still listen to Theresa’s full interview on the NPS MedicineWise Podcast website or wherever you get your podcasts:
🎧 Episode 22: “Changed behaviour care — a patient perspective”
🌟 About DAI
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