Being a lesbian, gay, bisexual or transgender (LGBT) person experiencing young onset dementia brings unique challenges and opportunities.
A diagnosis of young onset dementia can raise issues for LGBT people that you may not have dealt with previously, such as having to ‘come out’ about your sexuality to people from health and social care services. You may fear that doing this will lead to hostility or prejudice. A second challenge is sharing your dementia diagnosis to your friends, family or others in the LGBT community.
Although there is no ‘one size fits all’ approach to navigating such disclosures, hiding parts of your identity, such as your sexuality or important relationships, can be very stressful. This can be made worse when you are having memory difficulties as it can be worrying trying to remember ‘who knows what?’
Talking through these issues with people you trust can help you make sense of them and decide how you want to deal with them. You should be encouraged to be clear in your care plan about how you want these issues to be managed. For example, what terms you would like to be used when describing your sexuality (eg gay, lesbian) and relationships (eg partners, boyfriends, friends, etc). If you can be active in this process it can help to give you a sense of ownership and of things being on your terms.
This is especially important when life becomes difficult, as when we feel vulnerable we are driven towards seeking environments and relationships in which we feel safe. Creating and maintaining these safe environments and relationships can be your first step towards living well with dementia.
It is important that you feel comfortable around health care professionals and in all of the care environments you visit. Care homes, health services and day centres should be encouraged to promote inclusive and accepting messages. This could include LGBT-affirming posters and literature. Unfortunately this might not always feel possible or easy.
This Alzheimer’s Society factsheet gives tips that you can share with your health and social care providers to help make their services more inclusive. It also includes tips on how services can reassure you and the people close to you that they are not prejudiced and considers how professionals might be able to sensitively approach issues of sexuality with their clients. Ignoring the issue means individuals can feel an important part of their identity is invisible and unwelcome.
It also addresses the particular legal issues that face LGBT people with dementia. For example, equality legislation exists meaning it is illegal for services and staff to discriminate against individuals on the basis of their sexual orientation. If you feel that discrimination is occurring, contact your local Equality & Human Rights Commission or Patient Advice & Liaison service if it occurs in an NHS setting.
Any couple facing the challenges of dementia can feel stressed and most will experience an impact on their relationship. Intimacy and sex can become tricky topics for you and your partner/s to discuss. You might like to access local relationship counseling services such as Relate, or you may prefer an organisation with experience and expertise in working with LGBT couples. Relationship counseling may help you both to have open and frank discussions about your feelings and expectations.
As a single person, it would be good to talk with trusted friends about how you want to approach intimacy and sexual relationships in the future. It could leave you vulnerable if this is something you have to negotiate on your own and defining your limits and boundaries with someone you trust may be beneficial.
Memory books are a great way to keep your unique life history with you. It can also be something you share with professionals so they are better able to understand your experiences. These might look different to other people with memory difficulties that you meet and that’s great because they should reflect you and your identity. This includes photos of partners, family, friends and pets. They might also include photos of special places you have visited or holidays you have been on.
Being a gay, lesbian, bisexual or transgender person can mean your culture is not the same as your heterosexual peers. You might like certain books, films, music and art that reflect this part of your identity, and staying connected with them can help your wellbeing. Also, LGBT people may be in relationships that are unconventional. Your significant personal relationships, be they romantic partners or friendships, should be valued and acknowledged by those you come into contact with.
As a younger LGBT person experiencing dementia you are in a unique position to help shape better services and social care in the future. One way that you could do this is through getting involved with dementia activist organisations. For example, Dementia Engagement and Empowerment Project (DEEP) is a user led organisation that aims to influence services and policies.
Another way to make a valuable contribution to our developing knowledge about LGBT people with dementia would be to get involved with research initiatives. Your local Alzheimer’s Society will include details of current research projects in their newsletter. The internet can also be a useful resource in terms of hearing about research and new developments for LGBT people with dementia, or you could contact your local Universities.
- James McParland is a Clinical Psychologist. As part of his studies he conducted research into the effect of dementia on LGBT relationships. You can follow James on Twitter.