Lessons from research with LGBTQ+ community partners
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This session explores the opportunities and challenges of conducting research with LGBTQ+ people with lived experience of dementia, an underserved population both in research and service provision. The session draws on a co-design project in which an academic team, experts-by-experience, and a visual artist collaborated as equal to produce research outputs. The underlying ethos was based on the principle of ‘to each their own (expertise)’, principles for good practice.
The session will first introduce the concept of underserved communities, based on NIHR definition. It will then illustrate why LGBTQ+ people experiencing dementia are an underserved population in research and service provision. Some of the distinct experiences and added challenges of LGBTQ+ people living with dementia will then be presented, including multiple forms of stigma, risks of social isolation, impact of dementia on identity and relationships and inequity in dementia services. The session will then describe methodologically the three elements of a UCL-Grand-Challenges project that the team undertook, comprising: 1. co-designed storyboards capturing lived experiences of dementia with LGBTQ+ community members; 2. Stakeholder workshops to set together research priorities for future LGBTQ+ dementia research; and 3. A final public dissemination and impact community event. The session will reflect on practical and methodological challenges, such as funding constraints, managing diverse perspectives, safeguarding privacy, and building trusted partnerships.
Attendees will have an opportunity to hear both from the perspective of the academic team, as well as one of the collaborators with lived experience. They will derive some reflective points and strategies on conducting inclusive, community-engaged research with underserved populations.
About the speakers
Dr Claudio Di Lorito is a Senior Research Fellow at University College London and NIHR Research Support Service Lead on Research Inclusion within the King’s College and Partners NIHR RSS Hub. Claudio’s research focuses on dementia care, with a particular emphasis on involving underserved groups such as LGBTQ+ and people with dementia who live alone. A mixed‑methods researcher, Claudio has authored 50 peer‑reviewed publications, including systematic reviews, realist evaluations, and intervention development studies, advancing inclusive health and social care research.
Neil is 82 years old, gay, out, loud and proud and at last he can be himself. He lives in North Yorkshire. Neil realised at an early age that he did not want to marry and have children, but did not know why, as in those days there were no role models, internet, google, etc. Neil met his future husband John in 1974, when life was still not easy, and lasted 41 years until John died from the effects of his dementia. This was a very challenging time, and his storyboard tries to explain this. Neil worked in the NHS for 33 years as a hospital engineer, and then Director of Estates. Since John’s passing, he has become involved in dementia research from a gay perspective and serve as the equality, diversity and inclusion trustee at Dementia Forward, a North Yorkshire and York charity supporting over 5,000 families experiencing dementia. Neil is busier now than he when I was at work!