LGBTQ+: Living with dementia

Accessing services

• Services

  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. 
• If you're worried about accessing services

  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.

• If you don't know where to find services
  • 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. 
• If you want LGBTQ+ specific services and support

  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.