LGBTQ dementia care

Dementia Care in the LGBT* Community

This week’s blog – which appears as part of Dementia Awareness Week – sees Opening Doors London’s Sally Knocker explain how dementia care differs for members of the LGBT* community.

“Nobody’s business” is everybody’s excuse?

  • “Why do you need a special group for people living with dementia and carers who are LGBT*?”
  • “Surely all the issues are the same; we don’t need to know about people’s sex life do we?”
  • “We treat everyone equally so they should be fine here”
  • “We don’t have any gay people here!”
  • “There are enough problems in health and social care that need attention, so why are you focusing on this tiny minority?”

I have heard all of these statements during my 30 years working in dementia care.

Whilst some of the people making them are well intentioned, others can be quite confrontational and hostile.  People who are not LGBT* struggle to understand why it might be very important at times in our lives when we are experiencing particular stresses and changes to be with people with whom there is no need to hide or explain who we are.

Some commentators describe it as enjoying having a shared culture. This is so much more than how we dress or whom we sleep with; it often defines our life experiences, our interests, our humour and the way in which we see the world. As one woman I met who had a home care worker visiting to support her with personal care said; “I need someone who can speak lesbian!”

dementia care

When thinking about dementia care for people who are LGBT*, the first core need seems to be one of psychological safety.  A great deal of emphasis is placed upon keeping people physically safe, but emotional safety can be harder to measure or safeguard.

Those of us who are gay, lesbian or bisexual will have spent a lot of our lives making almost daily assessments of whether we feel safe to be open about who we are – whether it is booking a double bed in a hotel, meeting someone new at a party, going to the doctor or buying a book or a magazine.  Trans* people are much less likely to be able to hide who they are and can therefore face more outright prejudice and abuse especially when they need help with personal care.

Older people who are LGBT*  have lived through times when they have been labelled as either ‘mad’, ‘bad’ or ‘sad’ and some have been criminalised, beaten up or lost their job or their children because of their gender identity or sexual orientation.

If I have a form of dementia, the nature of cognitive impairment may well mean that I will lose the logical processing filter which monitors my words and responses to situations, so I am more likely to just speak or act in the moment; to go directly from a feeling into an action.

Alternatively, I think some gay or trans people living with dementia may sense deep down in themselves that they still need to be careful, so they may withdraw themselves from social situations to avoid any possible rejection or prejudice. This may then increase our isolation and vulnerability at the very time when we most need help.

dementia care 2

For some LGBT* carers – particularly those who are looking after parents – there is often the assumption that they will have ‘more time’ to look after someone, especially when their siblings have families and they don’t.  They may find themselves losing contact with some of their LGBT* friends and interests as they focus on supporting a family member living with a dementia. In some cases they may need to return to hiding who they are with a parent or family member who doesn’t know they are LGBT*.

Trans* people face additional complex issues in relation to their gender identity as their cognition deteriorates and they potentially return to a different period of their lives in their mind and memory.

For all these reasons and many more, we feel the time has come to set up the first pan-London Rainbow Memory Café.  This is an exciting opportunity to offer LGBT* people a welcoming place to find support and information about dementia, have some fun and most importantly be themselves with others who are also LGBT*.

As a result, Opening Doors London are hosting a consultation event for interested ODL members and health and social care professionals across London. The event takes place Friday June 23rd – 11am-1pm at Tavis House, 1-6 Tavis Square, London WC1H 9NA.

Please do come and join us whatever your sexuality or gender identity! We need everyone to ‘come out’ and understand that it is their business to know and to respect that people who are LGBT* do have particular needs and concerns in relation to dementia care and support.

Come and find out more about our plans for the first ever London-wide LGBT* focused dementia initiative which will be a vital new resource for you to offer clients/patients and carers from this often isolated community.

Book your free ticket here.

Sally Knocker

Sally Knocker is a Consultant Trainer with Dementia Care Matters with over 30 years experience in dementia care. She has also written a range of publications related to LGBT ageing including a forthcoming book with Age U.K. called 'Safe to be me'. She is coordinating the new Rainbow Memory Cafe in a new role with Opening Doors London.

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