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We all know that everybody’s dementia journey is different. It’s based on who we are, what we have experienced, and the support we receive, as well as the type of dementia we have.
But for members of the LGBTQ+ community, there are other factors to take into consideration when trying to live well with dementia that others might not have to consider.
For those of you that don’t know, LGBTQ+ stands for lesbian, gay, bisexual, transgender, with the plus covering the wide range of sexual orientations and genders beyond LGBT. The community is often represented by the Pride or Progress flag.
Members of staff at Dementia Support recently undertook LGBT Champion training provided by The LGBT Foundation to help us better understand how we provide more effective support to those in the community living with dementia. Dementia Support is dedicated to supporting everybody to live well with dementia, but part of that is understanding that different communities face different challenges and obstacles when accessing help and how to work with people to overcome them.
LGBT and Living with Dementia
Some dementia symptoms may have specific implications for LGBTQ+ people. This could be because of changes you’ve gone through in the past, or because of things you have to worry about on a daily basis. This could be fears of your gender not being recognised, other people’s views and prejudice against the LGBTQ+ community or because of growing up in a time when it was illegal to be gay, or the treatment you have experienced from medical professionals in the past.
Making the daily decisions about whether or not to share your sexual orientation or gender identity is a personal choice, but as the dementia progresses this could become harder and, as time goes on, you may lose the capacity to make this choice. For example, you might unintentionally refer to your partner as such and would mean that you are 'out' without realising it, or you become afraid to publicly call them your partner when you previously would have done. Talking to your friends and family about this and what you want to happen could lessen the stress around this for you and your support network, whether this is biological or found family.
People living with dementia forget their most recent memories first. Whilst this by itself can be distressing for the person and those around them, for members of the LGBTQ+ community it can mean that they forget that they have come out publicly or transitioned. This can leave you in the situation of waking up in a body you don’t recognise or next to your partner of many years when you don’t remember coming out and living as your true self. Naturally, this will cause anxiety and could bring back feelings of shame and fear from your past if it hasn’t always been acceptable for you to be out.
Even after starting to receive ongoing support for dementia, a lot of dementia activities are around reminiscence. For members of the LGBTQ+ community, this could be more complicated than for heterosexual and cisgender people. The activities could take you back to a time of painful memories, maybe of being closeted due to homosexuality being illegal or a disapproving family. If you are worried about this for yourself or your loved one, bringing it up to those running the activity will ensure they can work with you to keep the activity enjoyable.
Getting Support for Dementia
Getting the right support and advice can improve your chances of living well with dementia. However, finding the right support for you can take some time.
You may also have specific requirements for the support you require. For example, you may want help from the LGBT community directly, or you could want to ensure that the services are inclusive and recognise the importance of your identity, rather than treating you the same as everyone else. This can be easily achieved by talking to those within the community who have gone or going through the same journey with their loved ones for suggestions, local LGBT organisations, and talking to dementia organisations like us at Dementia Support as we have Wayfinders to help advise you.
There are also different forms of support, and a variety of support providers could be required at the different stages of the dementia journey. This can include respite care, support at home and nursing care.
Because dementia is a disease that progresses, you, just like everybody living with dementia, will find it increasingly difficult to manage day-to-day tasks and will require more assistance and support as time goes on. Planning ahead can help people living with dementia prepare for this, and if you are a lesbian, gay, bisexual, or transgender person, there may be some unique items to consider. For example, getting a Gender Recognition Certificate or giving your partner the ability to make decisions on your behalf by setting up Lasting Power of Attorney.
Dementia Charity and LGBT
At Dementia Support we want to help everybody live well with dementia. We work tirelessly to improve the support we offer; this includes educating ourselves and working in partnership with organisations more knowledgeable than ourselves, like Chichester Pride and the LGBT Foundation. That’s also why some of our staff undertook the LGBT Champions training and have shared what they learnt with the rest of the team.
We know it’s a journey, much like dementia, to keep ourselves educated and responsible for being a strong advocate for members of the LGBTQ+ community living with dementia, but we will keep working on it.
Our focus will always be supporting those living with dementia, just like a pride charity’s overarching focus will be on supporting the LGBTQ+ community. But there is an overlap, and we want to ensure that people are given the support and advice that they deserve so they can live well with dementia and not be afraid of reaching out when they need to because of who they are.
Please call us if you need to talk or need advice on 01243 888691 or email us at info@dementiasupport.org.uk.