7. Services and support
Getting professional help and support can enable you to live well with dementia. But it can be hard to find the right kind of support. In this section we explain what is available, and how to find the services that are right for you.
As your condition progresses, you are likely to need more help and support. This may come from a partner, friends or family. However, there will come a point when you will probably need to think about other forms of support.
- You might want to think about accessing local services for people with dementia such as a dementia adviser or dementia support worker. They can provide information and support around your diagnosis, and help you to plan for the future. They will also know about any local services, such as activity groups, that might be of interest.
- You may want to go along to a dementia or memory café or a support group to meet other people with dementia who you can talk to. This can be really valuable as a way to come to terms with your diagnosis and get the emotional support you need to deal with your condition.
- You might want to think about getting help at home – for example, from a care worker through a homecare 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 may be in the form of a support worker or a local carer’s group.
- If you are finding it hard to come to terms with your diagnosis, or you are experiencing apathy, depression or anxiety, you may want to think about counselling or another talking therapy to help with these problems.
- As your condition progresses, you may not be able to get the help and support you need at home, and you will need to think about moving into supported living or a care home.
Worried about accessing services?
As an LGBT 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 go back ‘in the closet’. You may also 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 to 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 for help and support, but you may need to access services too. The key is to find services that are inclusive and LGBT aware, that understand your needs, identity and past experiences and that you would feel comfortable with. This might take a bit of work, but it will be worthwhile to find the right help.
If and when the time comes, you may feel the same about care settings. For more information see the next section.
Understanding your needs
If you decide you need or want to access services or move into a care home, you may worry that your identity and needs will not be properly understood.
Often services assume that people are heterosexual. For example, they may run reminiscence sessions where you look back at times in your life. These will often focus on a family and children which may not be relevant for you. If you’ve not opened up about your sexuality or mentioned your partner (if you have one), you might feel uncomfortable talking about them. You could feel that you have to hide a very important part of your life.
Even if services and support workers know you are LGBT, they may assume that treating people equally means you want to be treated ‘the same as everyone else’. They may not understand that your sexual orientation or gender identity are important parts of who you are, and that you want to be able to be yourself.
Making assumptions about your sexual orientation or gender identity like this may not be intentional, but it can make you feel excluded and make it harder for you to get the support you need.
If you feel comfortable, you could try to explain to the staff or care workers that you want to be able to express your identity, and not be treated the same as everyone else. You could even suggest they read our page on this topic – Supporting a lesbian, gay, bisexual or trans person with dementia.
How to find services that are right for you
It’s important for you to find services and care settings that understand you and can meet your needs. Although there are lots of good services for people with dementia that are LGBT aware, not all of them will be. The following suggestions and things to think about might help you to find the right ones.
- Ask others in the LGBT community to see if they have any suggestions for services.
- Look for services and care settings that are LGBT aware. They may have a kite mark or a sign (usually the rainbow sign) that shows this.
- If there is a website or brochure, do you see any lesbian or gay couples, or any transgender people? Do they suggest the service is LGBT aware?
- What kind of words do they use? This is usually a good way of seeing if they are LGBT aware (for example using ‘they’ instead of ‘he’ or ‘she’).
- Ask them if they have any LGBT awareness training or how staff support LGBT 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 and what you’re looking for. They may not have thought about the needs of LGBT people before, but if they are aware of what you need they might be able to help make the service work for you.
It can be harder to find services that meet your needs. 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.
Services and care settings for LGBT people
You may look to other lesbian, gay, bisexual or trans people with dementia for emotional support. You may be used to being within LGBT social groups, and they may understand what you are going through better. This can also mean you feel more comfortable accessing services from the LGBT community, as they are likely to have a better understanding of, and be more tailored to, your needs.
The LGBT Consortium has a directory that might be useful. It includes services and support groups for older people. You might want to check if there is anything in your area. You can find details of the LGBT Consortium in Other useful organisations.
You may also want to contact a local LGBT organisation in your area. They may know about any groups or services that are available locally for LGBT people with dementia.
Some Age UKs now also run LGBT support groups. Check with your local Age UK to see what is available.