Finding the right care as an LGBTQ+ person with dementia

As an LGBTQ+ person with dementia it's important to find the right support services and care settings for you. Read about what to look for.

LGBTQ+: Living 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.

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. It can 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. 

Finding care settings that are right for you

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 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.

For information and advice about housing options, including for older LGBTQ+ people, CQC or Stonewall Housing may be able to help.

Care homes: When is the right time and who decides?

Read our advice and practical tips on when is the right time to move into a care home, and how to approach the situation.

Read our advice

Accessing services as an LGBTQ+ person with dementia

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.
  • Speaking to your GP if you are finding it hard to come to terms with your diagnosis, or you are experiencing apathy, depression or anxiety. They can suggest ways to help you manage this, such as counselling and other therapies.
  • Getting help at home – for example, from adult social services or a private homecare agency. They can help with things that you find difficult and help you to manage at home.
  • Talking to your partner about getting support for them. 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. 

Advice on accessing the right services for you

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.

  • 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. 

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.

Consortium has a directory that might be useful. It includes LGBTQ+ services and support groups for older people. You might want to check if there is anything in your area.

You may also want to contact a local LGBTQ+ organisation in your area. They may know about any groups or services that are available locally for LGBTQ+ people with dementia.

Organisations such as Age UK run LGBTQ+ support groups in some areas. 

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