Blog – LGBTQ+ and higher dementia risk

In my previous blog, I explored the underrepresentation of the LGBTQ+ community in care home research and examined the possible reasons for their exclusion. On exploring this further I became aware of the specific challenges faced by LGBTQ+ individuals with dementia, and that this group had in fact a higher risk of developing dementia due to several increased risk factors. Since a significant proportion of care home residents live with dementia, I felt this topic warranted further exploration and, from a personal perspective, possible awareness raising through my ENRICH Scotland and the NDN research network role.

Increased Health Risks.

A brief review of the literature confirms that research consistently shows that LGBTQ+ individuals experience heightened risk factors for dementia. There is certainly a growing interest in this field confirming that health disparities play a major role (Ref4). It is recognised LGBTQ+ individuals face higher rates of cardiovascular disease and diabetes—both well-documented risk factors for dementia. These disparities are often linked and heightened by barriers to healthcare access, lifelong experiences of discrimination, stigma, and a deep-seated mistrust of healthcare professionals.

Minority Stress and depression.

Another key factor contributing to cognitive decline within the LGBTQ+ community is “minority stress”—the chronic stress caused by discrimination, societal stigma, and the need to conceal one’s identity (Ref1). As with all individuals increased stress and often resulting depression presents as a significant increased dementia risk factor and the further vulnerabilities among LGBTQ+ older adults compound these risks.

Isolation.

Social isolation is another well-recognized contributor to cognitive decline. LGBTQ+ individuals are more likely to live alone, have fewer familial support structures, and often lack children who might otherwise serve as caregivers. These circumstances make them particularly susceptible to the negative effects of isolation, further increasing their risk of cognitive impairment (ref 3). Additionally, dementia research often requires a study partner as part of inclusion criteria—an aspect that can inadvertently exclude LGBTQ+ individuals, reinforcing their underrepresentation in research.

If we accept my previous estimate that up to 5% of Scottish care home residents are likely to be in the LGBTQ+ group and acknowledge these well-documented dementia risk factors, it becomes increasingly concerning that they remain so underrecognized in care settings and underrepresented in research.

ENRICH Survey 2024.

This concern was reinforced by the 2024 biennial survey conducted by ENRICH Scotland, which targeted over 400 registered care homes. Originally designed to gather insights into care homes’ perspectives on research topics and evolving attitudes, the survey, for the first time, included a question about LGBTQ+ support, prompted by the growing recognition of a knowledge gap in this area. Care homes were asked whether they had an LGBTQ+ champion or designated support worker. The responses clearly highlighted a significant lack of structured support as can be seen from the summary below.

• 79% of care homes either explicitly stated “no,” marked the question as “not applicable,” or left the response blank.
• 6% responded “no” but expressed openness to the idea.
• Only 2.5% acknowledged having a designated LGBTQ+ support staff member.

While unsurprising, these findings reinforce the gap in LGBTQ+ representation and support within care settings. This is not intended in any way as a criticism of care homes—after all, I initially dismissed the possibility of recruiting from this cohort in an ENRICH-supported study, and as a retired CPN of 25 years working in older adult mental health, was not aware of this groups increased dementia risk. This has certainly prompted some self-reflection possibly driving me to explore this issue and clearly reflects a broader systemic issue.

The key question is how to bridge this knowledge gap and ensure that care homes are better equipped to support LGBTQ+ residents, particularly those living with dementia. While attitudes toward gender and sexual identity are evolving, progress takes time. Just over 40 years ago, same-sex relationships were still illegal in Scotland and hopefully, in another 40 years, all care homes will fully support LGBTQ+ individuals. In the meantime, addressing these issues requires a multifaceted approach:

• Dedicated Support Roles: Encouraging care homes to appoint LGBTQ+ champions or support workers can provide residents with a trusted point of contact and foster a more inclusive environment.
• Targeted Training and Education: Care home staff need comprehensive training on LGBTQ+ issues, particularly the unique challenges faced by LGBTQ+ residents with dementia.
• Inclusive Research Practices: Dementia studies should reevaluate exclusionary criteria and actively recruit LGBTQ+ participants to ensure research findings are representative of diverse populations, taking into account the issues of study partners.
• Community Engagement: Collaboration between care homes, LGBTQ+ advocacy groups, and healthcare organizations can help create a more supportive and informed care environment.

Raising Awareness.

While these needs extend beyond the direct responsibility of ENRICH Scotland, raising awareness and highlighting these issues as “research necessary” is well within its remit.

Supporting structures for LGBTQ+ individuals in care homes is not just a matter of equity—it is essential for delivering compassionate, person-centered care.

Moving forward, there is an urgent need for research supported “evidence-based” policies, that prioritize inclusivity and the well-being of LGBTQ+ older adults, ensuring they receive the dignity, respect, and support they deserve.

Bernie McInally

Author

Bernie McInally is a Clinical Studies Officer at NHS Lothian and the Neuroprogressive and Dementia Network. Bernie’s background is in Nursing, working in Mental Health and with Older People. He retired from full time NHS clinical work, and is now back working in Clinical Research supporting delivery of the Enabling Research in Care Homes (ENRICH) Scotland. He is passionate about research delivery, and opening access to people in all communities.