Members of the 2SLGBTQI community are more likely than ever to live with dementia or to be an unpaid carer to someone who lives with dementia.

As the proportion of Canada’s aging population is expected to climb to nearly one quarter in 2031, according to a 2021 Statistics Canada report, an increase in dementia diagnoses is expected. In fact, the Public Health Agency of Canada projects that 78,600 older adults will be newly diagnosed with dementia each year, and this does not include people living with young onset dementia.

Furthermore, research links a history of social inequity to greater risks of cognitive decline and dementia. For too long, 2SLGBTQI community members faced discrimination, including in health care, with many experiencing care refusal, misgendering and partner nonrecognition.

Though inclusivity is improving within our society, the reality of prejudice remains, which stokes fear and presents distinct barriers for the community, particularly when seeking diagnosis and treatment for dementia.

Egale, Canada’s leading charitable organization for two-spirit, lesbian, gay, bisexual, transgender, queer and intersex people, aspires to challenge these issues head on, to increase understanding and to end discrimination for 2SLGBTQI people living with dementia and unpaid care partners.

In 2019, Egale partnered with the National Institute on Ageing (NIA), a public policy and research centre at Toronto Metropolitan University dedicated to successful aging.

With funding by a Dementia Community Investment Grant from the Public Health Agency of Canada, the project launched in December 2020 and consisted of three generalized phases: research, education and building awareness.

Researching for change

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The research phase aimed to answer the questions:

• What are the experiences, perspectives and needs of 2SLGBTQI people living with dementia and their carers?
• How can people, organizations and institutions come together to enhance care and support?

To answer these questions, researchers held nationwide focus groups, interviews and consultations with 2SLGBTQI people living with dementia and unpaid primary carers, community group representatives, and dementia care and service provider stakeholders. They asked questions about care experiences, expectations and desired changes.

In May 2022, Egale and NIA released their research report titled, Coming Out and Coming in to Living with Dementia: Enhancing Support for 2SLGBTQI People Living with Dementia and Their Primary Unpaid Carers.

Authored by Dr. Ashley Flanagan from NIA and Egale’s Dr. Celeste Pang, the report discusses the importance of highlighting gender and sexual identity in persons living with dementia and carers, the diverse ways people can become carers, and the needs and strategies required to better support them.

"Seeking support for living with dementia can be a challenging time for everyone — layering fears of discrimination or erasure on top of that makes it even harder."

– Dr. Celeste Pang

Pang is Egale’s senior research officer in 2SLGBTQI health, aging and housing, and the project’s co-lead. “We found that 2SLGBTQI persons living with dementia (PLWD) and their carers can be grappling with issues of recognition and erasure — this could include not being recognized as spouses or partners in health care encounters, or having one’s gender or sexual identities erased,” says Pang.

“We also found that carers for 2SLGBTQI PLWD have a range of prior relationships, from close family members to more distant community members who have shown up to be carers. Depending on prior relationships, carers will also need different kinds of assistance and support.”

Egale’s website gives examples of persons in each type of situation. One such is Jack, a single, gay 70-year-old man diagnosed with dementia, who finds himself with very few people to turn to for support, having lost many members of his chosen family to the AIDS crisis in the 1980s. A trans woman named Nicole steps in to care for him, but they constantly face assumptions about their relationship dynamic, which leads to isolation and stress.

Pang confirms Jack and Nicole are not alone in their experiences.

“Many 2SLGBTQI people have had negative experiences and barriers accessing health care that affirms their genders, identities and relationships,” Pang says. “Seeking support for living with dementia can be a challenging time for everyone — layering fears of discrimination or erasure on top of that makes it even harder.”

"By learning more about 2SLGBTQI communities and ways to support PLWD and their carers, professionals can provide better care to future clients and to clients they already have."

– Dr. Celeste Pang

Promoting education

After releasing these research findings, researchers moved on to the second phase of the project — education. To promote education, Egale developed research-based e-modules for those looking to learn and create more inclusive care environments for 2SLGBTQI people living with dementia.

The first is designed for health-care providers, social work professionals and other dementia support personnel. Even those working in home care, community care or long-term care settings may be interested.

“By learning more about 2SLGBTQI communities and ways to support PLWD and their carers, professionals can provide better care to future clients and to clients they already have, whether they know it or not,” says Pang. “This can be as simple as challenging basic assumptions and using more inclusive language.”

Notably, researchers developed key recommendations for improving dementia care based on the research:

8 tips for improving 2SLGBTQI dementia support

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1. Recognize unpaid carers, including non-familial carers
2. Create support spaces for 2SLGBTQI PLWD and their carers
3. Fund support services
4. Expand inclusive care and support services to non-urban environments
5. Create more services and reduce barriers to accessing dementia-related care and support for small and rural communities
6. Integrate dementia-focused discussions and education into 2SLGBTQI support and social groups
7. Include 2SLGBTQI experiences and histories into coursework for social service and health-care providers
8. Enable ongoing professional development for social service and health-care providers, including regular paid training

In addition to promoting education of dementia care professionals, Egale created a second e-module meant for anyone providing unpaid care or support to a 2SLGBTQI person living with dementia.

“It is a self-guided module, which means that people can access it online and do it on their own time,” says Pang. “Drawing on our research, it introduces different elements of dementia and care experiences, gives community members [time] to reflect on their own experiences of anticipated experiences and directs them to further resources.”

Other resources include a guide on how to be an ally, which offers communication tips, and a printable document where you can write your name, pronouns and other identity information to give to health-care professionals to ensure interactions are affirming and inclusive.

Building awareness and looking ahead

Researchers are now working on the final phase of the project — building awareness.

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A "guidance document" of promising practices for health-care and service providers is set to be released in 2023, says Pang.

But as it is now, Egale’s online resource is already building awareness. And so far, the project is being well-received.

“We’ve had a lot of positive feedback from community members and from professionals working in health care and social service professions,” says Pang. “I’m very pleased with the research and education work that we are doing.”

Pang looks forward to a future full of positive change for 2SLGBTQI people living with dementia and their primary unpaid carers.

“There are direct service groups and agencies that are doing excellent work supporting people living with dementia, and more and more who are recognizing the need to tailor supports to 2SLGBTQI communities and finding ways to do this,” she says. “Future funding and efforts must continue to support this work.”