Last month the National Care Forum published a welcome good practice paper focusing on dementia care and LGBT communities. It includes discussion of the ‘Over the Rainbow’ project that I did last year with some support from DEEP, The Dementia Engagement and Empowerment Project. The National Care Forum’s paper offers a welcome addition to the growing interest in understanding the needs and experiences of these marginalized groups. The landmark 2009 National Dementia strategy, for instance, makes no reference to LGBT issues. And, as the report highlights, although the UK is home to an estimated 1.2 million older LGBT people, they are an invisible population who are rarely acknowledged by service providers and commissioners.
Good practice guidance, but where is the research-base?
Research on this population is also scant. With colleagues Dr Joanna Semlyen (University of East Anglia) and Dr Joanne Brooke (University of West London) we recently undertook a comprehensive scoping review of the literature in this area. Dr Semlyen presented our findings at the 31st International Conference of Alzheimer’s Disease International in Budapest last month and Dr Brooke discussed the work as part of the symposium ‘Ageing and Sexualities: Diversity and intersectionality matters’ I organised for the Psychology of Sexualities Section at the British Psychological Society Annual Conference, also last month.
We know that this population not only delay in accessing healthcare but also experience heteronormative services. From the four research databases we searched there were only 15 papers published between 2006 and 2014 that we could include in the review. So the research evidence-base is very small, and the inclusion of the perspectives of LGBT people living with dementia themselves is almost entirely absent. Professor Murna Downs (University of Bradford) has described the edited book ‘Lesbian, Gay, Bisexual and Trans* Individuals Living with Dementia’ published this month as ‘a milestone in our field’. And just last week a study based on 10 interviews with lesbians and gay men with dementia and their significant others was published in the journal Dementia. Yet larger scale research projects are needed in order to fully understand the perspectives of, and nuances in, these especially vulnerable communities. Without the research evidence-base to inform improvements to dementia care for LGBT people there is the risk that increased visibility will not result in better care.
Elizabeth Peel @profpeel
McParland, J. & Camic, P.M. (2016) How do lesbian and gay people experience dementia. Dementia May 9, 1471301216648471
Peel, E. & McDaid, S. (2015) ‘Over the Rainbow’: Lesbian, gay, bisexual, trans people and dementia project. Summary Report. University of Worcester. Available at: http://eprints.worc.ac.uk/3745/
Semlyen, J., Brooke, J. & Peel, E. (2016) The needs of lesbian, gay, bisexual and trans (LGBT) people who are affected by dementia: A comprehensive scoping review. 31st International Conference of Alzheimer’s Disease International, 21-24 April, Budapest, Hungary.
Westwood, S. & Price, E. (2016) (Eds.) Lesbian, Gay, Bisexual and Trans* Individuals Living with Dementia: Concepts, practice and rights. London: Routledge.