Supporting an LGBTQ+ person with dementia

We use the terms lesbian, gay, bisexual, trans and queer (which are included in LGBTQ+) to mean the following:

• Lesbian – a woman who has an emotional, romantic or sexual orientation (attraction) towards women.
• Gay – a man who has an emotional, romantic or sexual orientation (attraction) towards men.
• Bisexual – a person who has an emotional, romantic or sexual orientation (attraction) towards men and women.
• Trans – a person who doesn’t identify with their assigned gender at birth, or who sees themselves as between, beyond or outside of the two standard categories of male and female.
• Queer – a term that some people use to describe their sexual orientation or gender identity. This can include, but is not limited to, lesbian, gay, bisexual and trans people.

The term heterosexual is also used to refer to a person who has an emotional, romantic or sexual orientation (attraction) towards people of the opposite sex.

The plus sign at the end of LGBTQ+ is to reflect that different people define themselves differently. Some people do not identify with any of the terms in our list of definitions. For example, some people identify as intersex, asexual or nonbinary. These and other groups are included when this factsheet uses the term LGBTQ+.

A person’s sexual orientation (sexual, romantic or emotional attraction to others) is different to their gender identity (how they see themselves – male, female, both or neither). Everyone will have both a sexual orientation and a gender identity. It’s important never to make assumptions about these.

Some LGBTQ+ people with dementia may find that their sexual orientation is overlooked by the people supporting them. However, it is a part of who they are, and they should be supported to express it if they want to.

Many LGBTQ+ people will have experienced negative attitudes, and some will have experienced hostility, rejection or abuse. They may have encountered:

• prejudice – people making judgements about them because of their sexual orientation or gender identity
• discrimination – being treated differently to other people because of their sexual orientation or gender identity
• hate crime – experiencing verbal or physical aggression because of their sexual orientation or gender identity.

If an LGBTQ+ person with dementia has had or still has difficult experiences, these could negatively impact their experiences of dementia.

For example, they may have encountered prejudice or discrimination from services such as the police or health and social care services. They may therefore not want to access or contact sources of support, or they may feel uncomfortable being open about their sexual orientation or gender identity around professionals.

They may worry about seeing GPs, nurses or social workers, for example. It’s important to acknowledge the person’s fears, and be sensitive to their needs, history and experiences to support them to live well.

Feeling safe is important for people with dementia and is likely to be especially important if a person is lesbian, gay, bisexual or trans. Some LGBTQ+ people may never have felt safe to express their identity, because of fear of how others will treat them. If a person experiences prejudice or feels isolated because of both their dementia and their sexual orientation or gender identity, they may be feeling very vulnerable.

Intimate relationships, friends and LGBTQ+ communities can help the person to feel safe and be themselves, and help their environment feel like a ‘safe space’.

While it is possible to develop dementia earlier in life, most people with dementia are over 65. For older LGBTQ+ people in the UK, there have been many negative experiences.

For example, in the 1980s, the AIDS epidemic developed. This affected large numbers of gay men in the UK, and many died. Reported unsympathetically in the media, this affected people’s attitudes towards gay men.

Many laws were also discriminatory, for example:

• Until 1967, sex between men was against the law in England and Wales (and until 1982 in Northern Ireland).
• Until 1973, homosexuality was listed as a mental illness in the manual used by mental health professionals in the UK.
• In 1980, ‘gender identity disorder’ was added to the list of disorders in the manual used by mental health professionals in the UK.

Despite significant changes in the law and in society’s attitudes, LGBTQ+ people of any age are likely to know and be affected by this history.

Inequality and unfairness for LGBTQ+ people continues to be addressed, including through recent important legislation:

• In 2003, the Employment Equality (Sexual Orientation) Regulations came into force. This banned direct and indirect discrimination, victimisation and harassment on the grounds of sexual orientation.
• In 2004, the Gender Recognition Act was introduced, allowing trans people to have their chosen gender legally recognised via a gender recognition certificate. For more information about gender recognition certificates see Planning ahead.
• In 2004, the Civil Partnerships Act was also introduced, allowing same-sex couples to have their relationships legally recognised.
• In 2013, the Marriage (Same Sex Couples) Act was introduced in England and Wales, enabling same-sex couples to get married.
• In 2020, same-sex marriage became legal in Northern Ireland.

Despite these more positive recent changes, an LGBTQ+ person may still have experienced prejudice, discrimination and hostility. These may have affected their identity or understanding of the world. They may also have an impact on how they cope day-to-day.

For example, they may be less likely to access the care and support they need because they feel they are likely to experience discrimination. This can put the person and those supporting them under a lot of strain. Be aware of their experiences as an LGBTQ+ person and how these affect them.

It’s important not to make assumptions about a person’s relationships. These may be influenced by a number of factors. For example:

• Some LGBTQ+ people do not see their ‘family of origin’ (the people they grew up with, often a biological or adoptive family) regularly or at all. This could be for several reasons, for example hostility or lack of understanding from the person’s family of origin.
• Some LGBTQ+ people are part of a ‘family of choice’ (people who aren’t their family of origin, but who support them as family). You might be included in this.
• Some LGBTQ+ people experience hostility from their community. For example, they may be from a culture that is less accepting of LGBTQ+ people.
• Some LGBTQ+ people don’t have children or grandchildren, so their main relationships are with other adults.
• Older LGBTQ+ people are more likely to be single and live alone. This can affect the support that they have and need.
• Some people may not understand the relationships that LGBTQ+ people have or may not consider them as important as heterosexual relationships. This can be difficult and frustrating for the LGBTQ+ person and may cause them not to be open about their sexuality.
• If the person and those supporting them aren’t in touch with their family of origin, they may have less support as their dementia progresses than others would. They may instead be supported by paid care professionals who don’t understand them or respect their relationships. This can create problems and may mean that the person’s needs aren’t met.

Many LGBTQ+ people may rely more on friends and other members of the LGBTQ+ community as they get older. Friends are an important source of support for LGBTQ+ people, and often make up the person’s family of choice. It’s helpful to know who these friends are. They are likely to have an important role in helping the person be themselves and keep aspects of their identity such as their life history and other important relationships.

The person’s friends may also be important in ensuring that the person’s care needs are met. Take their views into account and be careful not to automatically prioritise or follow the views of the person’s family of origin regarding their care and support.

The person’s ‘family of choice’ may have their own health and care needs to manage. This can lead to the person becoming isolated and not having as much support as they might need. People with dementia may also find it harder to stay in touch with people, so it’s important that they are supported to continue their social relationships.

If an LGBTQ+ person is in a relationship, it is important that this is acknowledged. Sometimes LGBTQ+ people find that others, such as care professionals, make assumptions about their relationships. For example, if a gay man is visited by his partner, care professionals might assume the person is his brother or friend. This can cause distress and make the person feel that their identity isn’t being acknowledged.

• Respect the person’s individual wishes and preferences.
• Talk to the person about telling those who are important to them that they have dementia. This will help these people to understand any changes in the person, 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. 
• Ask the person about the pronouns they wish to be known by – for example, ‘he’, ‘she’ or ‘they’.

There are fewer services available specifically for LGBTQ+ people with dementia. 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:

• Talk to the person about their wishes as early as possible. This includes their treatment and care wishes, other needs and who they want to involve in supporting them or making decisions. Make sure these wishes are recorded, to help ensure they are met later on if the person is no longer able to make particular decisions. 
• 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 LGBTQ+ people. It may also be helpful to ask local LGBTQ+ services if they provide any support for people with dementia.
• Find out about care homes or supported living options as early as possible, so that you and the person with dementia are prepared if it is needed in the future. This can help to 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.
• Help the person with dementia to record other things that are 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 not just their identity as an LGBTQ+ person. This will enable them to provide better, more person-centred care. This can be very helpful, particularly if the person has communication difficulties. Alzheimer’s Society produces a tool called This is me, which can be used to record these details. 

Remember that legally, everyone has the right not to be discriminated against because of their gender identity or sexual orientation.

Caring for a person with dementia can be rewarding but also very challenging. It’s 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. Supporting an LGBTQ+ person with dementia can have particular challenges, such as:

• issues with accessing appropriate services and a lack of support
• conflict with others (for example, the person’s family of origin)
• 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.

These challenges can be even bigger if you are also LGBTQ+. You may feel vulnerable yourself. Remember that you have the same rights as the person with dementia not to be discriminated against for your sexuality or gender identity.

Support is available and it’s important to seek help if you need it. This could be from a support worker or a carers’ group, for example.