I cared for my husband Tom with Progressive Supranuclear Palsy for 16 years. Having been given a diagnosis of dementia in 2016 after 8 years of cognitive changes and decline, I found very little specific advice for people who are LGBTQ+ in this circumstance, and determined to raise awareness and bring about change. There are reasons why sexual minorities need different if not, extra, support when confronted with such a diagnosis. 

A percentage of the substantial cohort of people who fought for the decriminalisation of homosexuality (1967) will develop dementia. This group of people not only worked hard to be open about their sexuality but also expect to be treated with the same level of respect and acceptance as everyone else. There is evidence that care homes and health services are not ready for this cohort, and projects to raise awareness and incorporate training about LGBTQ+ are vital. It is a very frightening prospect to feel that it would be necessary or safer to hide your sexuality after a lifetime of fighting for it to be accepted, when faced with needing care.

Key factors are:

  • proportionally fewer people who are LGBTQ+ are in long-term supportive relationships
  • there is a well-documented mistrust of statutory services particularly among older people
  • it is difficult  to repeatedly 'come out' in every Health and Care setting
  • cognitive impairment may lead to confusion about the current legal status of homosexuality

This poses significant anxiety and fear for people who are LGBTQ+ finding themselves needing to access health and social care. 

Considerable progress has been made:

  1. The Terrence Higgins Trust and Stonewall, among other organisations, have produced empirical social research which identifies the problems that arise from the historic mistreatment of sexual minorities. Terence Higgins Trust
  2. A report by the Dementia Action Alliance (2017) looked at the experiences of seven 'Seldom Heard Minority Groups' with dementia and their encounters with formal services. Dementia Action Alliance Seldom Heard Groups
  3. The Alzheimer's Society developed a significant project entitled 'Bring Dementia Out' which is an excellent resource highlighting the issues. Alzheimers Society Bring Dementia Out
  4. Opening Doors London (supported by Age UK) identified a need to provide a safe place where people who are LGBTQ+ could go to share and learn from each other's experiences. They provide a Rainbow Memory cafe and virtual support groups. This is a good first step as this supportive environment is unquestioning about sexuality. Opening Doors
  5. Tom's legacy is the newly established LBGTQ+ Dementia Advisory Group (https://www.lgbtqdementiaadvisorygroup.net/about and the following publications/presentations: 

Here is a personal song, a tribute to my dear husband, Tom.



Please contact me if you would like further information or advice.