What happens when a diagnosis doesn’t just change a life, but quietly changes the way a room responds to you?
In this episode, Andrew Karesa sits down with Phyllis Fehr, an international dementia advocate, registered nurse, author, and human rights leader who has been living with a diagnosis of early-onset Alzheimer’s since the age of 53. Phyllis’s relationship with dementia began long before her own diagnosis, shaped by early caregiving experiences in her family and later by a career in critical care nursing. Those layers of lived experience inform everything she shares in this conversation.
Phyllis reflects on what it was like to notice changes in herself, to seek answers as a healthcare professional, and to eventually receive a diagnosis that altered not only how systems saw her, but how people spoke to her, looked at her, and included her. She describes moments where conversations shifted mid-sentence, where attention moved away from her, and where assumptions about capacity replaced curiosity about who she still was.
Throughout the conversation, Phyllis speaks candidly about living with dementia day to day. She challenges the idea that diagnosis equals disappearance, and explains how capacity, autonomy, and consent can fluctuate without vanishing. She shares how she continues to assess her own abilities, adapt when needed, and assert her right to be involved in decisions about her life.
Andrew and Phyllis also explore how dementia becomes a human rights issue, not only in policy rooms, but in ordinary interactions. Phyllis draws from her work with provincial, national, and international bodies, including advisory roles and advocacy at the United Nations, to explain how people living with dementia are often invited into conversations symbolically but excluded in practice. She speaks openly about tokenism, stigma, and the emotional cost of constantly having to prove you are still capable.
The episode also touches on the importance of creativity, intergenerational relationships, and purpose. Phyllis shares how staying engaged, writing, speaking, and connecting with children and grandchildren has helped her maintain identity and meaning, even as she navigates change. Rather than framing dementia as a story of loss alone, she offers a more complex and honest account of what remains.
Throughout the episode, Phyllis challenges common assumptions about dementia, including who it affects, how capacity is understood, and why silence and exclusion often cause more harm than the disease itself.
In this episode:
• What changes socially after a dementia diagnosis, even when the person is still present
• How being treated differently can erode dignity long before abilities are lost
• What capacity and consent look like when cognition fluctuates
• Why living with dementia is also a human rights issue
• How advocacy rooted in lived experience differs from policy on paper
• The role of creativity, purpose, and connection in living well with dementia
• Why claiming your voice matters, even when systems are uncomfortable listening
Whether you are living with dementia, supporting someone who is, or trying to understand dementia beyond stereotypes and clinical language, this conversation offers clarity, honesty, and a powerful reminder that diagnosis does not erase personhood.
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Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members.