Following his recent publication in Aging & Mental Health, our Centre for Dementia colleague, Claudio Di Lorito writes about the need for LGBTQIA+ voices to be heard in dementia research, and his personal commitment to improving service provision for this overlooked group.

As a proud LGBTQIA+ person, in my academic career I have always strived for research that changes societal perception and stigma and promotes equality and inclusion for my community. During the years I spent in the United States for my undergraduate studies, I was involved in a project investigating attitudes and perceptions on homosexuality and HIV in the Chinese communities of New York City, and in research about gay couples’ attitudes toward safe sex. With my lifetime partner, we became very involved in advocacy efforts. We volunteered at the Anti-Violence Project, a third sector organisation tackling crime against LGBTQIA+ communities, and we rallied and lobbied to legalise same-sex marriage in New York State, a successful effort which led to realising our own dream of getting married in November 2011.

Not seen, and not heard

Back to present times, 10 years later, much water has passed under the bridge. We live in a world that was just unimaginable in my New York days. Still, some things never seem to change, and I find myself older, bolder (and balder) still fighting against inequality faced by our community. In my current work as a Research Fellow in the field of dementia at the University of Nottingham, it pains me to observe that, of all the hundreds of participants included in my research project, none seems to belong to the LGBTQIA+ community. Why is it that we are not visible in research, particularly when it comes to dementia and old age, when statistics on prevalence tell us that we do exist? If we are not represented in research, our voices are silenced and unheard in dementia service design and implementation.

Driven by an almost darwinist instinct of self-preservation, I started to wonder what will become of me and my husband, if one day we are affected by dementia, and to explore what the state of dementia support services for our community is through contacting LGBTQIA+ voluntary organisations. The response was unequivocal: services still adopt a heteronormative approach, assuming that heterosexuality encompasses all human experience, and struggle to address the support needs of our community, which becomes hesitant to seek help in times of need. It soon became clear that staff need more effective equality and inclusion training, but also that a top-down agenda within organisations is required to promote a change in culture, perceptions and attitudes. I soon realised that something must be done and approached scientists who have pioneered research in this field to gauge their interest in a potential research project to promote culture sensitivity in dementia services.

Triple stigma

I contacted Professor Elizabeth Peel from Loughborough University, who produced one of the first reports on LGBTQIA+ people and dementia, and Dr Sharron Hinchliff from the University of Sheffield, who has a background of research and advocacy in sexuality in older age. Their response was very positive. Unfunded, but driven by a strong commitment to the cause, our little research group expanded. We found allies in senior staff at the University of Nottingham, including Professors Tom Dening and Rowan Harwood. Through their professional network, we started to explore whether key staff in the NHS Trusts throughout the Midlands thought that statutory services can effectively explore the distinct needs of LGBTQIA+ service users. Although training already exists out there, the directors of Nottinghamshire, Leicestershire, Linconshire, and Midlands NHS felt that more should be done to ensure equitability in dementia support services for LGBTQIA+ communities, and gave us unconditional support to pursue research in this area.

The real epiphany, however, was a fateful meeting that the LGBT Foundation organised between me and Neil, a former NHS worker, who has become an incredibly inspiring companion in this adventure. Neil had a bittersweet story to share. His late lifetime partner had been diagnosed with dementia and after a long struggle, had passed away a few years ago. Neil had fond memories of the love of his life, but he also felt he had lived in a “golden cage” for years, as his partner had always refused to come out. He had therefore spent years as a closeted gay caregiver of his closeted partner with dementia, and this had added an incredible burden to the already excruciting experience of caregiving for the person you love when they develop dementia.

From an intersectionality theory perspective, Neil and his late partner had faced triple stigma by society: one relating to ageism, one to the experience of dementia, and one to homosexuality. His story was exemplary of the barriers to service access that LGBTQIA+ people dealing with dementia face and, with any crisis that this condition entails, face on a daily basis. Being confronted with the real life experience of a true survivor really shook me. Neil’s story proved that we, as a research team with multidisciplinary knowledge and networks, had a duty to make a change so that other people like Neil and his partner would not have to endure the same sense of helplessness and isolation. Because of his lived experience, as a PPI member of our team, Neil immediately contributed invaluable insight and expertise. Brainstorming sessions generated ideas and we agreed that the first sensible step in this venture was to do a review of the literature synthesising the scientific evidence on support provision for the population of LGBTQIA+ people affected by dementia.

Rainbow-PATHS

Results from this paper identified some distinct experiences and needs of LGBTQIA+ communities experiencing dementia, including a loss of an LGBTQIA+ identity, the impact of historical events on help-seeking, the centrality of families of choice as opposed to families of origin, and issues relating to disclosing an LGBTQIA+ identity to service providers. It also identified current barriers to support, which include negative attitudes of staff and subsequent reluctance to seek support. In line with feedback previously gathered from LGBTQIA+ voluntary organisations and NHS Trusts, the literature confirmed that strategies to overcome the current challenges included staff awareness training and kite-marking inclusion. We were reinforced in our willingness to pursue research in this area by the positive response of the journal Aging and Mental Health, which recognised the importance of our work and published it: https://www.tandfonline.com/doi/full/10.1080/13607863.2021.2008870

The next logical step for us was to develop a research proposal aimed at creating inclusivity training for members of staff working in dementia support services in the statutory and independent sector. We named this training with the acronym Rainbow-PATHS, which stands for Promoting Access To Healthcare and Support services for LGBTQIA+ people experiencing dementia.

A rainbow awaits

Aware of the challenges of securing funding, but firm in our belief that the project had value, we set out to submit a bid for the next NIHR Research for Patients’ Benefits call. In the months heading to submission, we worked incessantly to secure partnerships with organisations and key research staff. We were glad that our project raised interest and that it was felt it was timely and it addressed a gap in service provision. A number of dementia and LGBTQIA+ organisations, including the LGBT Foundation, Dementia Forward, the Alzheimer’s Society, Birmingham LGBT, Dementia UK, the York LGBT Forum, and the LGBTQ+ Dementia Advisory Group agreed to become partners in our study. Similarly, a number of NHS Trusts’ directors shared our vision and provided us with letters of support. We were also able to involve in our research team three pioneers in international research on LGBTQIA+ communities and dementia: Professor Toni Calasanti from the Virginia Tech Institute, Professor Brian deVries from the San Francisco State University, who are conducting a study on dementia caregiving in the LGBTQIA+ community (https://caregivingstudy.weebly.com/ ), and Professor Karen Fredriksen-Goldsen from the University of Washington State, with whom we became collaborators in her Global Pride Study (https://goldseninstitute.org/globalpridestudy/ ).

Despite a very competitive application, we received a negative outcome from NIHR. This felt particularly bitter, given that NIHR advertised their priority to fund projects underpinned by principles of equality and inclusivity. Nevertheless, the incredible and continuous support received by so many members of the public, scientists and organisations renewed our commitment to keep trying. To further expand our potential, we have recently made contact with Daniel Bailey at King’s College Hospital, and Patrick Hogan at University College London Hospital, two medical professionals who have also pioneered research and practice in this area. Eventually, we know that funders will appreciate how important and meaningful this work is. As in many previous battles fought by our community, we are confident that once past the storm, a rainbow awaits us.