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Alzheimer’s Awareness Month: Illuminating the Journey of 2SLGBTQI Communities Living with Dementia

By: Dr. Ashley Flanagan


Inclusive pride flags hanging on a clothesline

Image of Dr. Ashley Flanagan, Gateway CERH Research Chair of Rural Diversity and Aging
Dr. Ashley Flanagan, Gateway CERH Research Chair of Rural Diversity and Aging

Aging is an undeniable facet of the human experience, but for Two-Spirit, lesbian, gay, bisexual, transgender, queer, and intersex (2SLGBTQI) communities, it often presents a unique set of challenges – such as an increased risk of cognitive decline. This January, as we observe Alzheimer's Awareness Month, it is important to also acknowledge the complex and intersectional experiences of living with dementia as we not only call for enhanced awareness of dementia throughout Canada – but also urge Canadians to confront the pressing need for tailored, inclusive healthcare support to safeguard the identities and dignity of those confronting dementia. 


Comprising over seven percent of Canada's 2SLGBTQI population, individuals over 65 are not just statistics; they are part of a generation that has both bore the weight of historical discrimination and celebrated transformative victories for their rights. These experiences come together to add a unique layer to the aging process – and impact their perceptions of healthcare services, social services, and programming. 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, maintaining identity) in old age, there is a dearth of knowledge, policy, and practices that are relevant to the lived experiences of 2SLGBTQI persons living with dementia (PLWD) and their unpaid caregivers. Therefore, as 2SLGBTQI people age, we need to recognize that their experiences may be unique in a way that requires specific considerations when providing care and support. 


To address longstanding gaps in recognition and support, the National Institute on Ageing and Egale Canada teamed for a national research project, funded by the Public Health Agency of Canada, to better understand the individual experiences of 2SLGBTQI PLWD and their unpaid caregivers in Canada. This project, entitled “Coming Out and Coming In to Living with Dementia: Enhancing Support for 2SLGBTQI People Living with Dementia and Their Primary Unpaid Carers,” highlighted the unique challenges faced by 2SLGBTQI individuals across Canada who are living with or connected to dementia; as well as emphasizing the urgent need for increased support alongside providing recommendations for much-needed improvements.  


 
Image of report entitled "coming out and coming in to living with dementia: A research report". Caption on image reads "projections estimate that the proportion of older adults living in Canada could increase from 18.5% in 2021 to 23% in 2031".
 

The key findings emphasize the importance of support in navigating changes within caring relationships, recognizing the diverse and fluid nature of identities, and providing a comprehensive range of services for both 2SLGBTQI PLWD and their caregivers beyond urban centres. The research also emphasizes the need to broaden the recognition of who caregivers are. It goes beyond spouses or biological family to include a neighborhood approach, chosen family, friends, and acquaintances, highlighting the importance of acknowledging and supporting the diverse caring relationships within the 2SLGBTQI community. 


To truly support 2SLGBTQI PLWD and unpaid caregivers, our research calls for more than piecemeal efforts. We need to see a radical structural and systems-level shift in health and social care. This change will require a dual strategy that emphasizes: 


  • Creating more support services that recognize and support the unique experience of living and caring within the intersection of dementia and 2SLGBTQI identities; and 

  • Dismantling barriers to accessing affirming, dementia-related care and support; especially within rural and small-town communities. 


As we work to transform the way that dementia care and support services are offered across Canada, we will also need to ramp up advocacy to raise public awareness about the complexities of aging and dementia within 2SLGBTQI communities. 


With this goal at the forefront, Egale Canada, in partnership with Fondation Émergence and the National Institute on Ageing, launched a poignant initiative — the Help Us Remain Campaign – this month. This campaign aims to spotlight the often-unheard stories of 2SLGBTQI individuals across Canada living with or connected to dementia. By sharing these narratives, the campaign seeks to raise awareness, foster empathy, and promote a deeper understanding of the unique challenges faced by 2SLGBTQI individuals across Canada who are living with or connected to dementia. At its core, the campaign brings these untold stories to the forefront, emphasizing their importance in creating awareness and cultivating empathy within the broader community. 


Image from the "help us remain: bring care for identity to care for dementia" campaign. Caption on text reads "I think as queer people we're always imagining there might be a situation. We're always anticipating it. [...] but the possibility that you might receive homophobic treatment of whatever sort is always there. It's always in your back...back of your mind."

The Help Us Remain Campaign isn't just about data and statistics; it's about people. In an era where inclusivity and understanding should be at the forefront, this campaign brings to the forefront the untold stories and urges us to confront the often-overlooked issues surrounding dementia in 2SLGBTQI communities. The narratives presented in the campaign are not just anecdotes; they are windows into lives that need understanding, empathy, and support. The campaign includes: 




A Cinematic Journey into the Heart of the Matter: The short film, "Help Us Remain," provides a poignant cinematic exploration of Ann's life, a trans woman facing early-onset dementia. Beyond being a reflection on her personal journey, the film emphasizes the advocacy needed for gender-affirming care when individuals like Ann can no longer advocate for themselves. This cinematic journey humanizes the struggle and serves as a compelling call for change, urging viewers to engage in advocacy efforts for those facing similar challenges. 


An Immersive Narrative Experience to Evoke Empathy: The Immersive Audio Gallery Exhibit will be open to the public from January 26 to 27, 2024, at The 519, a charitable, non-profit organization supporting the 2SLGBTQI community in Toronto. The exhibit features ten personal images coupled with evocative memories from the 2SLGBTQI communities that showcase the significance of queer memories and shed light on concerns related to cognitive decline and dementia.  


Educational Resources as Catalysts for Change: Recognizing that empowerment often emerges from education, Egale Canada has also consolidated a number of educational resources as part of the campaign. From the research report to 2SLGBTQI Identity and Dementia e-learning modules to resources specifically designed for unpaid caregivers, Egale Canada helps to equip individuals with the essential tools needed to navigate the complexities of dementia care.  


In conclusion, the Help Us Remain Campaign calls for collective acknowledgment and action to ensure that the specific needs of 2SLGBTQI communities are not just recognized but actively addressed, particularly in the context of dementia care. Through heightened awareness, thoughtful education, and unwavering advocacy, the campaign aims to contribute to a more inclusive and supportive healthcare landscape for all, regardless of identity or orientation. It stands as a vital force for change, championing inclusivity and understanding to protect the dignity and identity of 2SLGBTQI individuals facing dementia. 


The time is now for us all to become agents of change within dementia care to ensure that no one gets left behind.  


 

Engage with the Help Us Remain Campaign by watching the short film, listening to the audio stories, and exploring educational resources at www.egale.ca/dementia  

This is not just an invitation; it's a call to action! 


 

About Author

Dr. Ashley Flanagan (she/her) is the Gateway CERH Research Chair of Rural Diversity and Aging. Dr. Flanagan is the Health Research and Policy Manager at the National Institute on Ageing. Dr. Flanagan’s research focuses on 2SLGBTQIA+ aging and old age with the goal of advancing comprehensive health and wellness policy, programs and services for older adults with diverse gender and sexual identities. 

 

Disclaimer: The views expressed in this opinion article are solely those of the author and do not necessarily represent the views or opinions of Gateway CERH. We believe in providing a platform for a diverse range of perspectives, and this article is intended to stimulate thoughtful discussion. 

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