Blog – LGBTQ+ in Care Home Research

As a heterosexual cisgender Scotsman born in 1960s Glasgow, I may not be the most obvious spokesperson for the LGBTQ+ community. I apologise if any language used here is inappropriate; any such instance is due to ignorance rather than any intent to offend. My involvement with the Neuroprogressive and Dementia Networks (NDN) has heightened my awareness of underrepresented groups in research, particularly within care homes. The LGBTQ+ community, often overlooked in this setting, is one such group, and it has recently become a priority in my thinking and work.

The Spark

As a Clinical Studies Officer with ENRICH Scotland, part of my role involves promoting relevant studies to care homes. My interest in this group’s inclusion was piqued when a study requested recruitment support specifically targeting LGBTQ+ residents in care homes. Though the study focused on previous drug use in older adults, the initial inclusion of LGBTQ+ participants puzzled me. From my 25 years of experience as a Community Psychiatric Nurse (CPN) working closely with care homes, I had doubts about the feasibility of this recruitment and wasn’t surprised when the criterion was eventually removed.

The study came and went, but my thoughts kept returning to why my initial reaction had been so sceptical about reaching LGBTQ+ participants and what that revealed about the broader attitudes of care home staff towards this community.

The LGBTQ+ Care Home Population

Debate exists over LGBTQ+ demographic data, not least because it covers a wide spectrum of identities and experiences. For my purposes, let’s use the 2022 Scottish census data, which indicates that about 4-5% of Scots identify as LGBTQ+. Given that Scotland’s care home population is just under 40,000 beds, up to 2,000 residents could fall within the LGBTQ+ cohort. This is a considerable number from a research perspective, contradicting my initial assumption of the difficulty of recruitment.

Recent History and Demographics

Interestingly, the census shows a trend: while around 10% of 16-24-year-olds identify as LGBTQ+, this percentage gradually declines with age, down to 1% at age 60 and just 0.2% at age 85+. I’m no expert on this topic, but it seems unlikely that human sexual orientation could have shifted so drastically in one generation. More likely, historical and social pressures have led to reduced visibility among older age groups. A stark example from Scotland is that while England and Wales decriminalised male homosexual acts in 1967, Scotland didn’t do so until 1980. An 80-year-old gay man in a care home today would have grown up with his sexuality deemed illegal until he was almost 40, making openness challenging, especially in a care community of the same generation. Some care homes even claim they have no LGBTQ+ residents, an assertion that doesn’t align with statistics.

Unintentional Exclusion and Study Barriers

My investigation also revealed possible unintentional exclusion of LGBTQ+ residents from research. In studies involving older adults, a “study partner” is a frequent inclusion requirement. However, the older LGBTQ+ community is shown to be more likely to experience loneliness, be single, have no children, live alone, and have limited contact with family (Sage 2017). These factors create additional hurdles to identifying a study partner. Compounding this, studies indicate that 80% of LGBTQ+ older adults don’t trust professionals to understand their culture or lifestyle, which likely includes care home staff.

LGBTQ+ and Dementia Risk

For anyone familiar with care home research, the statistics are unsurprising: 70-80% of residents live with dementia, and age is the biggest risk factor. However, it was new to me that health disparities within the LGBTQ+ community can also elevate dementia risk. Conditions such as diabetes and hypertension, which increase dementia risk, are more prevalent in LGBTQ+ groups. Combined with social isolation, stigma, and limited support, these factors can exacerbate dementia symptoms and heighten vulnerability. There is even evidence of “re-closeting” among LGBTQ+ individuals as dementia progresses.

Moving Forward

Reflecting on my initial reservations about LGBTQ+ recruitment has given me insight into the challenges of involving this group in care home research. Recently, I was fortunate to attend both the Alzheimer’s Scotland conference in Edinburgh and the Alzheimer Europe Conference in Geneva, where the inclusion of LGBTQ+ communities was widely discussed. Engaging speakers such as John Hammond and Daithi Claton shared their lived experiences, and support groups, professional bodies, and academic organisations provided perspectives that educated professionals like myself who, however unintentionally, may have overlooked this significant cohort.

LGBTQ+ specific services, including care homes and retirement villages, are beginning to emerge. With greater openness and inclusion in education, I hope we can progress toward ensuring that LGBTQ+ experiences are acknowledged, understood, and represented in research. This inclusivity is crucial not only for understanding but also for planning the future of care for this community.

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.