LGBTQ+: Living with dementia
Information provided by Alzheimer’s Society, www.alzheimers.org.uk/.
LGBTQ+: Living with dementia
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Everyone experiences the challenges of dementia in their own individual way. Being LGBTQ+ and having dementia can bring other additional challenges. It can help to be aware of and prepared for these issues.
You may feel that lots of the information, advice, and support you are offered aren’t right for you. You may have, or feel you have, different circumstances to heterosexual or cisgender people. This could be because of your experiences or living arrangements, the support you receive, and who you have around you.
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Some of the symptoms of dementia can have particular implications for LGBTQ+ people. For example, memory problems might make it harder for you to remember who you have told about your sexual orientation or gender identity.
Dementia is a progressive condition. This means that the symptoms get worse over time. As your condition progresses, you will find it harder to manage day-to-day things and you will need more help and support.
Planning ahead can help you prepare for this, and there may be specific things to think about if you are LGBTQ+. For example, this might include getting a Gender Recognition Certificate or ensuring that your partner has the ability to make decisions on your behalf.
You may also want different things from the services and support you access. For example, you may want services that are LGBTQ+ inclusive and who understand how important your gender identity and sexual orientation are to you.
It’s important to know that you aren’t alone. Support and advice are available, there are services and care settings designed to support you, and the law protects your rights to equal treatment and privacy. By knowing your rights, finding the right support, and planning for your future, it can be possible to live well with dementia.
Getting support as an LGBTQ+ person with dementia
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It’s important to have a good support network around you. This could include people who can help you with day-to-day things you find difficult, like shopping or cooking, or people you can talk to about what you’re going through.
As an LGBTQ+ person, you may look to a number of different people or groups for support. Some of the following may be true for you:
- You may get a lot of support from others in the LGBTQ+ community.
- You may no longer be in touch with or may have a complicated relationship with, your ‘family of origin’ (the people you grew up with, often a biological or adoptive family). For example, you may have experienced hostility from them.
- You may have what is called a ‘family of choice’ (a group of people who are not your family of origin, but who support you as a family).
- You may experience hostility from your community. For example, you may be from a culture that is less accepting of LGBTQ+ people.
- You may not have disclosed your sexual orientation or gender identity to your family, or even some of your friends.
- You may or may not have children or grandchildren who support you.
- You may have more support from people your own age, rather than people of a different generation to you.
- You may be single or living alone.
Whatever your social group and support you have, it’s important to get the help you need. Try to make the most of whatever help those close to you can provide, and know where to get the support that’s available.
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Support with daily living
Talk to those close to you about what they can do for you – for example, helping you out with shopping or tasks around the house. You may also like to talk to them about accessing services and what you want others to know. This could include whether or not you want to be ‘out’.
Support with managing your feelings
Talk to friends and family about how you feel and any worries you have. They may have their own experiences to share or may be able to provide support, so you don’t have to do things alone if you don’t want to.
Support with planning ahead
Talk to the people close to you about the future, and any wishes you have. This might include the care you want to receive, or where you want to live. You may want to put things in place now, to help people know your wishes if you are unable to make decisions for yourself in the future.
Planning ahead as an LGBTQ+ person with dementia
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It can be hard to think about the future, but it’s important to do it as soon as you feel ready. It can also be reassuring to get things in place early. It’s important that you are supported to make your own decisions wherever possible and for as long as possible.
However, as your dementia progresses, there will come a time when you no longer have the ability (known as ‘mental capacity’) to make certain decisions for yourself.
Thinking about what you want to happen in the future means your wishes will be taken into account when this time comes.
Planning ahead is important for everyone with dementia. As an LGBTQ+ person it can be particularly important for the following reasons:
If you don’t say who you want to make decisions for you, it is likely to be left to, or influenced by, health professionals or your family of origin. This may or may not be what you want to happen.
If you are trans, the law may not recognize your gender identity unless you go through a formal process to have it recognized.
If you don’t make a will, your partner or family of choice may not be entitled to the things you own when you die. They may also not be involved in arrangements after your death, such as your funeral.
By making your wishes clear now, you can avoid these problems in the future. This means that you can live the way you want to and get the care you want and that the people involved in making these decisions will be those you have chosen.Advocacy services may also be able to support you if you are unable to make your own decisions. There are organizations that may be able to help with this, such as Galop and Stonewall.
Finding the right care settings as an LGBTQ+ person with dementia
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With the right support, it is possible for people with dementia to live in their own homes for longer. However, as your condition progresses, you will need more support. Eventually, there may come a time when you need to think about moving into supported living or a care home.
This may be difficult for you. Your home may be where you feel safest and the idea of having to move may be distressing. You may be worried about having to move into supported living or a care home for many reasons (see Accessing services).
As an LGBTQ+ person with dementia, it can be difficult to find suitable housing, but options are available. It may help to look into this as soon as you feel able. It might feel very early to think about this now, but it will help you to be ready if the time comes.
It can also help to talk to those close to you, where appropriate, about what you want in the future. You might also want to record your wishes about the kind of care setting you would want if the time comes.
Our tips about accessing services will apply to supported living or a care home as well. Some other things to think about include:
- Does the culture of the home make you confident that your sexual orientation or gender identity will be respected?
- Will you be able to express your relationships without threat and be given the same respect as others?
- Are there private areas for visitors to talk to residents?
- Is there space for you to be intimate with your partner if you want to be?
- If you have LGBTQ+ friends, ask them if they know anything about the home you are considering. For example, if anyone they know or anyone you know has been a resident.
- Do you know of any LGBTQ+ members of staff who work at the home? Although this does not guarantee an LGBTQ+ friendly environment, it might give you some confidence.
- You could ask if you can choose who supports you or provides certain types of care. You may feel more comfortable with a certain person, or you may want to have one or two people who know you and your needs well.
- When looking for a supported living or a care home, it’s a good idea to look into as many options as possible. You may want to contact or visit a variety of places to see if they seem suitable.
- First impressions are often a good guide – if you don’t feel comfortable and safe then it is unlikely to be the right place for you.
Accessing services as an LGBTQ+ person with dementia
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Following a diagnosis of dementia and, as your condition progresses, you are likely to need more help and support to live well. This may come from a partner, friends, your family of origin, or your family of choice. However, you will probably need to think about other forms of support as well.
For example:
- You might want to think about accessing local services for people with dementia and speaking to a dementia adviser or dementia support worker. They can provide information and support to help you understand your diagnosis and plan for the future. They should also know about any local services, such as activity groups, that might be of interest.
- If you are finding it hard to come to terms with your diagnosis, or you are experiencing apathy, depression, or anxiety, speak to your GP. They can suggest ways to help you manage this, such as counseling and other therapies.
- You might want to think about getting help at home – for example, from adult social services or a private home care agency. They can help with things that you find difficult and help you to manage at home.
- You might want to think about getting help at home – for example, from adult social services or a private home care agency. They can help with things that you find difficult and help you to manage at home.
- If you have a partner or someone who is supporting you, you might want to talk to them about getting support for themselves. This can be from a support worker or a local carer’s group.
- As your condition progresses, you may not be able to get the help and support you need at home and may need to think about moving into supported living or a care home.
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Getting professional help and support can enable you to live well with dementia. However, as an LGBTQ+ person, you may feel reluctant to access services. You may be worried about having to disclose your sexual orientation or gender identity or having to hide it.
You may value your privacy and feel that professional care is an intrusion into your personal life. For example, you may feel uncomfortable about strangers coming into your home if it is normally a safe space for you. Or the idea of revealing your body to professionals during personal care may be daunting.
You may worry about stigma and discrimination, or that your identity and needs will not be properly understood. You may feel that you will become isolated from the things that are important to you, and you may worry about being lonely because your experiences are different from other people’s.
These feelings are all understandable, and you won’t be the only one who feels this way. However, when you have dementia, it’s really important to get the right help and support to enable you to live well.
You might look to those close to you, but you may need to access services too. Try to find services that are inclusive and LGBTQ+ aware, that understand your needs, identity, and past experiences, and that you would feel comfortable with. This might take a bit of time, but it will be worthwhile to find the right help.
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- Personal recommendations are a good starting point. Ask any LGBTQ+ friends if they have used any services and whether they would recommend them.
- Ask other people in the LGBTQ+ community to see if they have any suggestions for services. Joining LGBTQ+ groups on social media can be a good way of finding out.
- Look for services and care settings that are LGBTQ+ aware. They may have a kitemark or a sign (usually the rainbow flag) that shows this.
- If there is a website or brochure, do they suggest the service is LGBTQ+ aware? For example, do they show pictures of lesbian or gay couples or any transgender people? You can also search for reviews of the service online for more information.
- What kind of words do they use to refer to people? This is usually a good way of seeing if they are LGBTQ+ aware. For example, they may use ‘they’ pronouns instead of ‘he’ or ‘she’.
- Ask them if they have any LGBTQ+ awareness training or how staff support LGBTQ+ people to access their services.
- Ask them how they would deal with any discrimination if it occurred.
- If you feel comfortable, talk to the people who run the group or service. Tell them about your needs as an LGBTQ+ person and what you’re looking for. Even if they don’t state that they are LGBTQ+ aware, they might be able to help make the service work for you.
- It can be harder to find LGBTQ+ aware services. This means it can be good to think ahead and look around for what is available even if you don’t feel like going to anything yet.
- You may need to try a few services until you find one that works for you. Try not to be disheartened by this.
- If you are eligible for support from your local authority, you may choose to receive this in the form of a ‘direct payment’. This can give you more flexibility and choice over your care.
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You may be used to being within LGBTQ+ social groups, and they may understand what you are going through better. This can also mean you feel more comfortable accessing services within the LGBTQ+ community, as they are likely to have a better understanding of, and be more tailored to, your needs.
You may also want to contact a local LGBTQ+ organization in your area. They may know about any groups or services that are available locally for LGBTQ+ people with dementia.
Memory problems and reminiscence as an LGBTQ+ person with dementia
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Issues related to your identity are sensitive and you may find difficulties caused by dementia distressing. For example, you may have trouble remembering whether you have ‘come out’ (told people about your sexual orientation or gender identity).
You may feel worried about problems developing in the later stages of your condition, for example needing help with personal care. This might be something you don’t want to think about now. Take things at a pace you feel comfortable with.
Talk to people who can help if you are worried about anything. This could be a partner, friend, or a professional such as a counselor. There are also things you can do to make sure that any future decisions are based on your wishes.
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If you are LGBTQ+, you may have to make decisions day-to-day about whether to disclose (tell people about) your sexual orientation or gender identity – whether to be ‘out’.
As your dementia progresses, you may lose your ability to make this decision. Some things can make it difficult for you not to disclose aspects of your identity, such as your appearance and medical history.
You may also be unable to stop yourself from disclosing your sexual orientation or gender identity by mistake. For example, you may refer to your partner without meaning to tell someone their gender. This could mean that you are ‘out’ without choosing to be.You should talk to those close to you about this, and what you would want to happen if this occurred. For example, talk about whether you would be happy to be ‘out’ to staff and other residents in a care home.
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If you are trans, you may have complex physical needs as a result of medical procedures or treatments, such as long-term hormone therapy. Dementia can make it harder to manage these.
For example, you may experience memory loss or problems with planning that can make it harder to remember to take medicines and tablets. It can help to find practical strategies, such as automated reminders to cope with these.
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As your dementia progresses, older memories are likely to stay with you longer than newer memories. This means you might remember your childhood better than the past few years. Eventually, you may feel like you are back in an earlier time in your life. This can sometimes cause very distressing symptoms for LGBTQ+ people:
If you identify as lesbian, gay, or bisexual, you might go back to a time before you came out.
If you are trans, you may go back to a time before you transitioned. As well as being distressing, this can make practical day-to-day things such as going to the toilet confusing and difficult. You might find that your ability to remember that you have transitioned comes and goes.
Symptoms may vary depending on how recently you transitioned or started the process, as well as how your dementia affects you. In some cases, you might need to access services for both genders.
To make sure that your gender identity continues to be recognized and respected as your dementia progresses, it’s important to plan ahead.
If you have experienced prejudice, discrimination, or harassment earlier in your life, these memories can return and make you feel unsafe.
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Some therapies aim to help a person’s memory through talking about events from their past. These are known as ‘reminiscence’ therapies and are often done in a group.
This activity can help you to see your life as a whole and recognize your experiences and achievements. Talking about who you are can help you to focus on your skills and interests, not your dementia. It can help to remind you and others that you have an interesting life.
Thinking and talking about your past can be more difficult if you have experienced prejudice, discrimination, and rejection. You may want to think carefully about whether this is something you want to do.
It’s important to think about whether you are comfortable talking about these things in a group situation. Read our information on finding services that are right for you.
If you decide that reminiscing would be helpful, you may also want to start keeping a memory or life history book. This can include information or keepsakes from your past, your experiences, and the memories that are important to you. It can help others to know more about what is important to you.