From the inside out: The integration, optimization, and promotion of inclusive approaches to supporting LGBTQI2S PLWD and their unpaid primary carers

Share your stories about the current state of care and support for LGBTQI2S people living with dementia in Canada. We want to hear from you on how care provision and support in Canada can be improved. We welcome participation of people with various additional interconnecting social identities and, in this study, particularly seek to amplify the perspectives of BIPOC (Black, Indigenous, people of colour) community members and those who live in rural areas. 

Recognizing the gap in current understandings of living and/or caring within the intersections of LGBTQI2S (lesbian, gay, bisexual, transgender, queer, intersex, Two Spirit) identities and dementia, this focus group study aims to better understand the unique experiences and needs of LGBTQI2S people living with dementia (PLWD) and their unpaid caregivers in Canada.

The study involves online focus groups across Canada with LGBTQI2S people living with dementia, and with the primary unpaid carers of LGBTQI2S people living with dementia. We aim to conduct a total of eight focus groups (consisting of approximately 4-6 participants) across:

  • Eastern Canada: Newfoundland and Labrador, Nova Scotia, Prince Edward Island, New Brunswick
  • Central Canada: Ontario, Quebec 
  • Western Canada: Manitoba, Saskatchewan, Alberta, British Columbia 
  • Northern Canada: Yukon, Northwest Territories, Nunavut

We invite focus group participants who:

  • Identify as lesbian, gay, bisexual, transgender, queer, intersex, and/or Two-Spirit;
  • Live with a diagnosis of dementia;
  • Are 18+ years of age; and  
  • Are capable to provide consent

OR

  • Provide unpaid primary care for an LGBTQI2S person living with dementia
  • Are 18+ years of age; and
  • Are capable to provide consent

If you are an LGBTQI2S person living with dementia, your primary unpaid caregiver does not need to participate (and vice versa) in order to be eligible for this study. Focus groups will be held separately with LGBTQI2S people living with dementia, and with primary unpaid caregivers.

If you volunteer to participate in this study, you will be asked to do the following:

  • Complete a Recruitment Form to indicate interest in participation;
  • Participate in a 30-35 minute Introductory Meeting with the investigator via telephone or using an online video conferencing service, in which we will determine your eligibility for the study, seek informed consent, and ask some basic demographic questions; and
  • Participate in a 2-hour Focus Group with an experienced facilitator and a researcher.

As a sign of appreciation, each participant selected will receive a $50 Amazon e-gift card at the beginning of their designated focus group.

The results of this research will be used to help inform educational efforts and awareness campaigns, and may also inform policy decisions and programming options.

All engagement will take place over email, telephone, or using an online video conferencing service. Only the focus group will be audio recorded to ensure an accurate transcript of the discussion. With your permission, anonymous quotations may be used in publications and/or presentations.

This research study is being conducted by Dr. Samir Sinha, MD, DPhil, FRCPC, AGSF, Director of Health Policy Research, and Dr. Ashley Flanagan, PhD, Research Fellow, National Institute on Ageing, Ryerson University in partnership with Dr. Dai Kojima, PhD, Director of Research, and Celeste Pang, PhD(c), Senior Research Officer, LGBTQI2S Health, Aging, and Housing, Egale Canada. If you have any questions about the study, including the recruitment form, or any concerns, please take a look at the study consent forms: for PLWD, for Caregivers OR contact the research team at dementiastudy@egale.ca

Concerns about the project may also be directed to Ryerson University’s Research Ethics Board at 415 979-5042, or by email at rebchair@ryerson.ca. The protocol number of this study is REB 2020-349.


This research study has been reviewed and approved by the Ryerson University Research Ethics Board [2020-349] and is funded by a Public Health Agency of Canada Dementia Community Investment grant.


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