New report highlights the unique challenges facing 2SLGBTQI people living with dementia

On May 16, 2022, Egale, one of Canada’s leading organization for 2SLGBTQI people and issues, and Toronto Metropolitan University’s National Institute on Ageing released the report “Coming Out and Coming In to Living with Dementia: Enhancing Support for 2SLGBTQI People Living with Dementia and their Primary Unpaid Carers.”

And the results have the potential to shape the future of 2SLGBTQI dementia services nationwide.

Uncertainty and stigma are recurring themes 

Researchers interviewed 17 2SLGBTQI people with lived experience of dementia and/or dementia caregiving in Canada to create the report and its recommendations. They also consulted with 20 dementia-service and 2SLGBTQI-elder representatives to check and expand the findings. 

What they heard were potent experiences of isolation and uncertainty.

“You’re stigmatizing a segment of the population because they have dementia. And then you’re double hit, because you’re gay, and you have dementia,” one person told researchers. “That’s a big whammy. And I don’t know that there’s enough education on what it means to be queer and to have dementia.”

Learning more about carer experiences

Researchers also heard about legacies of informal dementia care already present for decades in the 2SLGBTQI community.

“Well, the biggest thing is that I’ve done a lot of [this since] the 80s, caretaking. Actually, dealing with dementia with much younger men, with HIV/AIDS,” said one older gay man. “So…there’s not a lot of surprises in how someone may act…I’ve volunteered, it’s kind of been what I’ve done all my life. A lot of that because we were in [a big city] in that era. That’s kind of what you did, your caretaking...So this isn’t new to me.”

Four key recommendations to improve support

Coming out of these conversations, the new report calls for four key recommendations to be implemented:

• Build 2SLGBTQI-inclusive dementia-related services and community spaces
• Increase recognition and support for primary unpaid carers of 2SLGBTQI people living with dementia
• Enhance supports for 2SLGBTQI communities and carers through structural and systems-level change
• Broaden perspectives and deepen community engagement for future critical research

“There are services that are geared towards the 2SLGBTQI community and services that are geared towards people living with dementia; very rarely do these services recognize and support the unique experiences of living and caring at the intersections of dementia and 2SLGBTQI identities,” explained report co-author Dr. Celeste Pang, Senior Research Officer at Egale, in an emailed release. “This separation creates barriers to access for 2SLGBTQI people living with dementia and those who care for them.”

New tools to help 2SLGBTQI people 

Now, in the wake of the report’s release, some new tools from Egale Canada and National Institute on Ageing are trying to bridge those intersections better.

New, free e-modules for healthcare and social-service professionals, as well as unpaid carers, have been released alongside the report. The new e-modules are available 24/7 through Egale Canada’s website.

Various Alzheimer Society groups in Canada are also working to improve 2SLGBTQI inclusion in dementia services:

• The Alzheimer Society of Toronto, for instance, offers a monthly 2SLGBTQI caregiver support group.
• The Alzheimer Society of Ontario has put together a brief tipsheet for inclusive dementia care.
• The Alzheimer Society of Nova Scotia’s 2021 conference included a session on creating 2SLGBTQI-affirming spaces.

These are just a few examples of the work many Alzheimer Society staff and volunteers across the country are doing.

Hear directly about the experiences of 2SLGBTQI people living with dementia

“Without greater knowledge and understanding that centres the perspectives of 2SLGBTQI people living with dementia and their primary unpaid carers within Canada,” said report co-author Dr. Ashley Flanagan, NIA Research Fellow, in an emailed release, “the ability of government, health care professionals, and others to provide equitable and comprehensive support and care is severely compromised, as is the ability to advocate for change.”

Want to learn more about the urgent issues facing 2SLGBTQI people living with dementia in Canada? On June 22nd, the Alzheimer Society of Canada hosted a free online panel: Turning up the Volume on 2SLGBTQI Needs in the Dementia Space.

In this digital discussion, join report co-author Dr. Celeste Pang, care partner and 2SLGBTQI advocate Sharon Hunter and dementia and sexuality researcher Dr. Birgit Pianosi for a chat that discusses the unique experiences – and challenges – of people living with dementia and care partners who are two-spirit, lesbian, gay, bisexual, transgender, queer, intersex and/or other gender identities, expressions and sexual orientations.

This is the latest in the new webinar series Dementia Talks! Canada, in partnership with leading brain research-focused organization Brain Canada. The talk will be moderated by Haridos Apostolides, Operations Specialist at the Alzheimer Society of Canada and himself a member of, and advocate for, the 2SLGBTQI community.