Baycrest Centre - Baycrest

Defy Dementia Episode 14: Stick it to Stigma

This episode of Defy Dementia explores stigma and dementia – what stigma looks like, the emotional toll it takes and its potential impacts on the health of individuals living with this diagnosis. Guests Myrna Norman and Jim Mann share their personal dementia journeys, recount experiences of hurtful prejudice they have faced and discuss their tireless efforts to combat stigma for everyone living with cognitive decline. Tune in to hear their inspiring stories and practical tips to fight stigma in your own community.

Episode 14: Transcript

Key takeaways

Dementia affects people differently, but a diagnosis doesn't change who they are, nor the respect they deserve.
Don't make assumptions about what people living with dementia need or want - talk to them.
Stigma intensifies the impacts of other dementia risk factors and inhibits people from seeking diagnosis or treatment for fear of facing harmful assumptions and discrimination.

When interacting with persons living with dementia:

Treat people with respect:
- Address them by their preferred name or title.
- Give them opportunities to express their preferences and feelings.

Personalize your interactions:
- Show you value people as individuals by remembering their hobbies, favourite music and food, and important life events.
- Engage them in conversations about their individual interests and passions, including any you may have in common.

Resources

Flipping Stigma Toolkit – from Canadian Institutes of Health Research
Stigma Against Dementia – from Alzheimer’s Society
What does Stigma and Dementia Look Like? – from Alzheimer’s Society
Overcoming Stigma – from Alzheimer’s Association
Dealing with stigma and discrimination against people affected by dementia – from Alzheimer’s UK
The Canadian Charter of Rights for People with Dementia – from Alzheimer’s Society

Learn more about our guests

Myrna Norman is an advocate, author, speaker, mother, wife and grandmother who lives in Maple Ridge, B.C. She was diagnosed with frontotemporal dementia in 2009. Her diagnosis has since shifted to Alzheimer's, Lewy body dementia and, most recently, to mild cognitive impairment. After her original diagnosis, Myrna struggled with depression and isolated herself. Myrna found her way out of her “cocoon,” as she calls it, through volunteering, establishing a Canadian chapter of the Purple Angel Ambassadors dementia support group and becoming an advocate for people living with dementia. Myrna also worked with Alzheimer’s disease advocate Jim Mann and researchers from the University of British Columbia on the federally funded Flipping Stigma toolkit, which was released in 2022. In her free time, she enjoys art, writing poetry and listening to audio books.

Jim Mann is a researcher, author and speaker who was diagnosed with early-onset Alzheimer’s disease in 2007 at the age of 58. Since his retirement, his focus has been on the meaningful and ethical engagement of those living with dementia, issues of stigma and unconscious bias, and technology. Jim was awarded an honourary Doctor of Laws degree from the University of British Columbia in 2020 for his work “countering negative stereotypes and promoting an inclusive society in which persons with dementia can make an active and meaningful contribution.” Jim was co-Principal Investigator of the federally funded Flipping Stigma project, which focused on reducing the stigma of dementia, and produced a free publicly available toolkit. He has authored/co-authored 56 papers and continues to give presentations across the country. As a community volunteer, Jim is also a member of several boards and committees aimed at improving the lives of individuals living with dementia.