This is a new service — your feedback will help us improve it.

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

Researcher bios and how their research backgrounds relate to this study

Dr. Samir Sinha is an Associate Faculty Member at Ryerson University. He is also the Director of Health Policy Research and Co-Chair of the NIA. He is a passionate and respected advocate for the needs of older adults. He currently serves as the Director of Geriatrics at Mount Sinai and the University Health Network Hospitals in Toronto. He is a Rhodes scholar, with great breadth of international training and expertise in health policy and the delivery of services related to the care of the elderly. In 2012 he was appointed by the Government of Ontario to serve as the expert lead of Ontario's Seniors Strategy; as well as the federal government’s National Dementia Strategy. He is also a member of the federal government’s Ministerial Advisory Board on Dementia. He has further consulted and advised hospitals and health authorities in Britain, Canada, Iceland, the United States and China. In 2014, Toronto Life named him one of Toronto’s Best Doctors while Maclean’s proclaimed him to be one of Canada’s 50 most influential people and its most compelling voice for the elderly.

Ashley has recently completed her PhD exploring transgender and non-binary older adults’ experiences, perceptions, and desires of/for community support within Southwestern Ontario—in which she completed 1:1 unstructured (9) and semi-structured (6) interviews, document analysis, and participant observation. She has also facilitated collective memory work focus groups with transgender University students and her Master’s research used 1:1 interviews to explore lesbian, gay, and transgender older adults’ experiences of aging and old age. In the past, she has also worked as research assistant for the Murray Alzheimer Research and Education Program (MAREP), as well as working as Program Coordinator at the Alzheimer’s Society of Waterloo-Wellington. Ashley brings significant experience working with LGBTQI2S older adults, as well as peopling living with dementia and their carers to this project.

Purpose of this research project

The NIA and Egale Canada have teamed up for an important new national research project to better understand the unique experiences of LGBTQI2S (lesbian, gay, bisexual, transgender, queer, intersex, Two-Spirit) persons living with dementia (PLWD) and their unpaid caregivers in Canada. Recognizing that there is a gap in current understandings of people who are living and/or caring at the intersections of LGBTQI2S identities and dementia, the goal of this research project is to connect to and explore individual experiences of care and support as lived by LGBTQI2S PLWD, unpaid caregivers, and/or LGBTQI2S caregivers of someone living with dementia through a series of online focus groups.

While it is becoming more well-known that sexual and gender identity matter with respect to expectations for care and quality of life (e.g., fear of being forced back into the closet[1], maintaining identity) in old age, there is a dearth of knowledge, policy, and practices that are relevant to the lived experiences of LGBTQI2S PLWD and their unpaid caregivers—especially when it comes to the ageing experiences of transgender and non-binary people, and queer and trans Black, Indigenous, and people of colour who are living with dementia[2].

As a result, there is a clear need to recognize the unique experiences (e.g., historical experiences of systemic discrimination, loss of familial relationships) of LGBTQI2S PLWD and their unpaid caregivers, as we advocate to ensure sexual and gender rights are recognized and respected in ageing and old age[3]. Therefore, the purpose of this national research study is to better understand the unique experiences and needs of LGBTQI2S people living with dementia (PLWD) and their unpaid carers in Canada. To achieve this goal, this research project aims to collect and explore individual experiences of care and support as lived by LGBTQI2S PLWD, unpaid primary carers, and/or LGBTQI2S carers of someone living with dementia. It is our goal that the insights provided by this study will positively influence LGBTQI2S PLWD and their unpaid caregivers’ experiences of care and support within communities across Canada. In particular, 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.

This study will involve up to eight focus groups with PLWD and unpaid primary carers in four regions across Canada:

  • 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

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 30-45 minute Introductory Meeting with the investigator, 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 the investigator. During this focus group, participants will be asked to share stories about the current state of care and support in Canada, your perspectives on the aspects of care/support that are beneficial and/or detrimental, and your hopes/suggestions for enhancing care provision and support in Canada.

All engagement will take place over email, telephone, or using Tauria, an online video conferencing system. 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.

[1] “The closet” refers to, according to Wilson, Kortes-Miller, & Stinchcombe (2018), “…being hidden for individuals who identify as LGBT. Being in the closet is an expression that is connected to a lack of disclosure of sexual orientation or gender identity, including aspects of sexual identity and sexual behaviour. Being forced back into the closet represents a fear of loss of autonomy, identity, and freedom of sexual expression. Participants expressed fear that they were at risk of being coerced back into the closet towards the end of their lives in order to feel safe during a period in which they anticipated being vulnerable and lacking in power” (p. 28).

[2] Babulal et al., 2020; Barrett, Crameri, Lambourne, Latham, & Whyte, 2015; Correro & Nielson, 2020; Moreno, Laoch, & Zasler, 2017; Peel, Taylor, & Harding, 2016; Wilson, Stinchcombe, Ismail, Kortes-Miller, 2019 .

[3] Baril & Silverman, 2019; Barrett, Crameri, Lambourne, Latham, & Whyte, 2015; Flatt, Johnson, Karpiak, Seidel, Larson, & Brennan-Ing, 2018.

How this research will help LGBT2SQ people and communities

We cannot guarantee that participants will receive any direct benefits from participating in this study. However, there is potential for future benefits to stem from this study that will improve support for LGBTQI2S PLWD and their unpaid carers. The goal of the inquiry is to support the extension of social infrastructure (through broader public awareness, resource development, and access to inclusive spaces) to support equity and inclusion for LGBTQI2S PLWD and their unpaid carers; as well as make visible the structures that maintain barriers to equitable and inclusive support. Without these intentional efforts to address the on-going disparity in care and support, LGBTQI2S PLWD and their unpaid carers will continue to experience barriers to equitable and inclusive support within their communities. It is our hope that participation in this inquiry contributes to strengthening support within the communities of participants—as well as within communities across Canada.

Participants

The following inclusion criteria for focus group participants are required:
• Identify as lesbian, gay, bisexual, transgender, queer, intersex, and/or Two-spirit;
• Live with a diagnosis of dementia;
• Able to provide consent.
OR
• Provide unpaid primary care for LGBTQI2S people living with dementia, are at least 18 years of age, and able to provide consent;
• OR identify as LGBTQI2S and provide unpaid primary care for a person living with dementia, are at least 18 years of age, and able to provide consent.

We welcome and encourage participation of people with various interconnecting social identities; such as Black, Indigenous, and People of colour, people who live in rural areas, etc.

Compensation

Since this is a national research project, we will be offering a $50 Amazon gift card to all focus group participants.

Mitigation measures

Due to the nature of the study, we anticipate that the focus group process may present some psychological, social, and legal risks; as well as risk of personal identity being revealed. For example, as the conversation unfolds, participants will explore potentially emotional and sensitive topics
of personal history, experiences, and perceptions as they relate to sexual and/or gender identity, dementia, and care and support that have the potential to be traumatic and/or triggering for some participants (e.g., previous or current experiences of neglect and/or abuse).

In the event that a participant discloses previous or current experiences of neglect and/or abuse, the subsequent duty to report to report elder abuse in Ontario is dependent upon whether the participant resides in a retirement or long-term care home. If the participant resides within a retirement or long- term care home, the researcher has a duty to report the abuse to one of the following:
• Long-Term Care ACTION Line at 1-866-434-0144 or TTY: 1-800-387-5559
• Retirement Homes Regulatory Authority at 1-855-ASKRHRA (2757472)

In either situation, in the moment of disclosure, it will be the facilitators responsibility to ensure that they respond to the participant with patience, empathy, and without judgement—which is why we are hiring experienced facilitators. Behind the scenes, it will be the researcher’s responsibility to ensure you have the time, resources, and support you need; including the provision of a list of free and affirming support services; such as Seniors Safety Line (1-866-299-1011).

Attempting to minimize the risks associated with participation in this study, focus groups will be led by facilitators who have experience in group facilitation. Further, all parties will work to create a welcoming and safe environment of mutual trust and sharing. In particular, during the Introductory Meeting, participants will be asked to provide some suggestions for “rules of engagement” that will be used in the focus group(s). These “rules” will be clearly laid out at the beginning of each focus group to establish openness, trust, and mutual respect within the focus group environment; as well as provide facilitator/researcher with guidelines for (re)framing discussions.

If at any point during the focus group, you become uncomfortable or distressed, you may skip answering a question or stop participation, either temporarily or permanently. In the event of this occurrence, it is the researcher’s responsibility to ensure you have the time, resources, and support you need; including the provision of a list of free and affirming support services, such as Here 24/7 at 1-844-HERE-247 (437-3247) or TTY 1-877-688-5501.

Promoting the Study

Our promotion strategy includes distributing our call for participants via the newsletters and social media (e.g., Twitter, Instagram, Facebook) accounts of Egale Canada and the National Institute on Ageing. Additionally, our call for participants will be distributed to Alzheimer's Society chapters across Canada; as well as local LGBTQI2S organizations across Canada.

RainbowHealthOntario @RainbowHealthOn Feb 26

Open #LGBT2SQhealth research: From the inside out: The integration, optimization, and promotion of inclusive approa… twitter.com/i/web/status/1…

RainbowHealthOntario @RainbowHealthOn Feb 25

RHO'S LGBT2SQ Foundations Course consists of 7 online modules for #healthcare and social service providers to buil… twitter.com/i/web/status/1…

RainbowHealthOntario @RainbowHealthOn Feb 24

Open #LGBT2SQhealth research: Learning from patients’ experiences with synchronous virtual primary care encounters… twitter.com/i/web/status/1…

RainbowHealthOntario @RainbowHealthOn Feb 22

Looking for #LGBT2SQ clinical resources? Download Sherbourne Health's Guidelines for Gender-Affirming Care for Tran… twitter.com/i/web/status/1…