Mike Parish, co founder of For Brian CIC, is the husband and full time carer for Tom Hughes who is diagnosed with Progressive Supranuclear Palsy. They have been instrumental in raising awareness about the needs of people with dementia who are LGBT+.

Having been given a diagnosis of dementia in 2016 after 8 years of cognitive changes and decline, I found very little specific advice for LGBT+ people in this circumstance. There are reasons why minorities need different if not, extra, support when confronted with such a diagnosis.

For LGBT+ people, key factors are that proportionally fewer LGBT+ people are in long-term supporting relationships. Also, there is a well-researched mistrust of statutory services particularly among older LGBT+ people, and further, it can be difficult for some LGBT+ people to 'come out' in every formal Health or Care setting.

Having researched the recent history of how this poses significant anxiety and fear for LGBT+ people who find themselves needing access to the health and care sectors, I determined to take that information and present it in different environments in order to raise awareness and hopefully bring about change. The Terrence Higgins Trust among other organisations have worked hard to produce empirical social research information on which planning for LGBT+ people with dementia approaching the health and care sectors in their later years can be useful. The Alzheimer's Society last year, developed a significant project around LGBT+ people with dementia entitled 'Bring Dementia Out' and this is an excellent resource and highlights the issues that LGBT+ people with dementia face. The background to this project was stimulated by the Dementia Action Alliance report in 2017 which looked at experiences of seven 'Seldom Heard Minority Groups' experiencing dementia and their encounters with formal services (including LGBT+ people).

At the same time, Opening Doors London (supported by Camden Age UK) identified a need to provide a safe place where LGBT+ people could go to share and learn form each others experiences. They run a monthly LGBT 'Memory Cafe' for people with dementia and cares or supporters. This is a good first step for LGBT people as the environment is supportive and unquestioning about sexuality.

We should expect a substantial cohort of LGBT+ people who after the decriminalisation of homosexuality in 1967 worked hard not just 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 some evidence that care homes and health services are not really ready for this cohort hence projects to raise awareness and incorporate training about LGBT people into carers practices. I think for most older LGBT people a very frightening prospect would be to feel that it would be necessary or safer to hide their sexuality after a lifetime of fighting for it to be accepted when faced with going into care environments.

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

TOM'S SONG:


Tom_Song_1.mp3

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

Alzheimers Society Bring Dementia Out

Dementia Action Alliance Seldom Heard Groups

Terence Higgins Trust

Opening Doors

Step into the Light

Quick Response: dealing with lockdown problems for people living with dementia

Sharing Stories, Changing Lives