LGBT dementia care: Understanding and support
Advice and practical tips for understanding and supporting an LGBT person living with dementia.
- Supporting a lesbian, gay, bisexual or trans person with dementia
- You are here: LGBT dementia care: Understanding and support
- LGBT dementia care: Changes in society
- LGBT dementia care: Relationships
- LGBT+ dementia care: Memory problems
- LGBT dementia care: Expressing identity
- LGBT dementia care: Services and care settings
- LGBT dementia care: Planning ahead
- LGBT dementia care: Other resources
Supporting an LGBT person with dementia
Living with dementia as an LGBT person can bring unique challenges, both for the person and those supporting them. Every person will experience dementia as an individual with their own experiences and life history, relationships, environment and support.
If an LGBT person with dementia has had or still has difficult experiences in the past these could negatively impact their experiences of dementia. For example, if they have encountered prejudice or discrimination from professionals or services they may not want to access services, or they may feel uncomfortable being open about their sexual orientation or gender identity around professionals. It is important to be sensitive to the person’s needs, history and experiences in order to support them to live well.
While the person’s identity as an LGBT person may be an important part of who they are, it is not the whole of their identity. They will have experiences, interests and hobbies and the person should be supported to continue doing the things that they enjoy and that make them who they are.
Feeling safe is important for people with dementia and is likely to be especially important if a person is LGB or T. Some LGBT people may never have felt safe to express their identity, because of fear of how others will treat them. They may worry about seeing professionals, such as GPs, nurses or social workers, because of this. Intimate relationships, friends and the LGBT community can help the person to feel safe and be themselves, and to help their environment feel like a ‘safe space’.
Tips for supporting an LGBT person with dementia
- Treat the person as an individual and respect their wishes.
- Talk to the person about letting those who are important to them know that they have dementia. This will help them to understand what is happening and to support both the person and you.
- Talk to the person about how they want to express themselves to others – for example, they may identify as a bisexual man, or a trans woman – and make sure they feel supported to make the decision.
- Support the person to be open about their gender identity or sexual orientation with whoever they choose to be. If there is anyone they don’t want to tell, respect this too.
- Talk to the person about their wishes as early as possible – around treatment and care, other needs and who they want to make decisions. Make sure these wishes are recorded, to help ensure they are met later on when the person is no longer able to make decisions. For more information see ‘Planning ahead’.
There are fewer services specifically for LGBT people available. It can help to plan ahead and think about what the person might need in the future and how to go about putting these things in place. The following suggestions might help:
- Think about services and look into what support is available for both the person and you. You may want to speak to services to find out what support they offer LGBT people. It may also be helpful to ask local LGBT services if they provide any support for people with dementia.
- You and the person with dementia may want to look up care homes or supported living options as early as possible, so that you are prepared if it is needed in the future. This can help make sure the person will move to a place where their gender identity or sexual orientation is respected and they are supported and treated equally.
- You may want to help the person with dementia to record what is important to them, such as their life history, likes and dislikes. This can help care professionals to have a better understanding of the person, and enable them to provide better, more person-centred care. This can be very helpful in a new environment.
Alzheimer's Society produces a tool called This is me, which can be used to record these details. To order a free copy go to alzheimers.org.uk/thisisme or call 0300 303 5933. This can be particularly useful if the person has communication difficulties.
Remember that legally, everyone has the right not to be discriminated against because of their gender identity or sexual orientation.
For more information, see our guide Understanding and supporting a person with dementia.
Looking after yourself as a carer
Caring for a person with dementia can be rewarding but also very challenging. Supporting an LGB or T person with dementia may present unique challenges, such as:
- increased stress
- issues with accessing appropriate services and a lack of support
- conflict with others (especially biological family)
- negative attitudes from others
- lack of recognition of your relationship to the person and concern about disclosing this relationship to others
- experiencing, or being worried about experiencing, discrimination.
It is important to take care of your own needs too, as this will help you to continue to care for the person and mean that you are better able to manage. If you are also LGB or T, it is important to remember that you have the same rights as the person with dementia not to be discriminated against.
For more information see our guide, Carers: looking after yourself.
Although an LGB or T person with dementia will experience challenges, support from you and others can help them to express their identity and enable them to live well.