Dementia in the LGBT+ community

If you are a member of the LGBT+ community who is living with dementia, or are caring for an LGBT+ person who has dementia, you might experience additional challenges with finding support, including stigma, discrimination and a fear of judgement when accessing health and social care.

Here, the specialist Admiral Nurses from our Health Inequalities Team share their expert advice for people from the LGBT+ community who are affected by dementia.

Challenges facing people from the LGBT+ community who are affected by dementia

In the UK, dementia affects an estimated 68,000 people who identify as lesbian, gay, bisexual, transgender, queer/questioning or another sexual or gender identity that falls under the LGBT+ umbrella. On this page, we use the term ‘LGBT+’, but we recognise that people may prefer to use different terms, including ‘LGBTQ+’.

Many members of the LGBT+ community have had negative and distressing experiences relating to their sexual or gender identity and preferences. For example, many older people grew up during the period when homosexuality was considered a mental illness and was an illegal practice. Many younger LGBT+ people with dementia have also faced stigma and discrimination.

As a member of the LGBT+ community who is living with dementia, or as the carer of an LGBT+ person, you may experience additional challenges, including:

• judgement and discrimination, including homophobia and transphobia
• a lack of specialist support services
• incorrect assumptions about sexuality or gender identity, for example that you or the person you care for are heterosexual
• uncertainty about whether to disclose information about sexual orientation or gender identity to health and social care professionals and others
• receiving unequal treatment on the grounds of sexuality or gender identity, eg being denied access to single-sex spaces
• inappropriate curiosity around your sexuality, gender and preferences
• difficulties when engaging with activities like reminiscence therapy or life story work, which could trigger past trauma
• lack of recognition of ‘families of choice’ (people who are not related to the person with dementia, but who they consider to be family), which can lead to them being excluded from health and care decisions
• changes in behaviours and symptoms such as disinhibition, which may put a strain on relationships with family and friends – for example, a person with dementia may disclose information about someone’s gender identity to others without their consent

Dementia risk factors in the LGBT+ community

Some things that increase the risk of dementia cannot be changed, like age or ethnicity. But many risk factors – such as physical inactivity, smoking, excessive alcohol intake, obesity, high blood pressure, diabetes, depression and social isolation – can be improved with healthy lifestyle choices.

Some of these risk factors are more common in LGBT+ people, due to a combination of health, social and lifestyle factors. For example, members of the LGBT+ community are more likely to smoke, drink more than the recommended amount of alcohol and experience depression and social isolation.

However, positive lifestyle changes can significantly reduce these risks and improve both physical and mental wellbeing. Read more about causes of dementia and reducing the risk.

How dementia symptoms may impact a person from the LGBT+ community

Changes in memory and cognitive function (thinking, decision-making and problem-solving) can pose particular challenges for people from the LGBT+ community who are affected by dementia. For example:

• The person may not recall disclosing their sexual orientation or gender identity (‘coming out’) and may try to conceal this information where they have previously been open about it. For example, they may deny their relationship with a partner, causing distress and anxiety
• A person who identifies as transgender may not recall that they have transitioned, or their memory of this may fluctuate. This could evoke negative experiences and emotions – for example if they previously concealed their gender identity because of a fear of discrimination or judgement from family, friends and professionals
• The person may fluctuate in how they identify, for example in how they dress or the pronouns they use, which could cause additional confusion for them and the people around them, including professional carers
• The person may inadvertently reveal the sexuality or gender identity of someone close to them who has previously not disclosed it
• Cognitive changes may lead to the person reliving experiences of previous trauma or distress related to their sexuality or gender identity
• The person might display disinhibited sexual behaviour and language which may increase the risk of judgement and discrimination and make them vulnerable, particularly in public situations
• The person may need extra support to remember to take essential medications – this is particularly important if they take regular hormone treatment or HIV medications

Getting a diagnosis of dementia as a member of the LGBT+ community

LGBT+ people may be less likely to seek a diagnosis of dementia due to fear of discrimination or past negative experiences with healthcare. Older LGBT+ adults are also more likely to live alone, meaning that other people may not notice changes in their memory and thinking or encourage them to get a memory assessment.

However, if you notice changes in memory or thinking in yourself or someone close to you, it is important to see a GP. This can feel daunting, especially if you have had bad experiences of healthcare in the past. However, putting off seeking medical advice and getting a memory assessment may mean opportunities for early support, treatment and care are missed, with a negative impact on health and wellbeing.

Getting a prompt diagnosis means you can:

• access the right care and treatment sooner; this may include medication for some forms of dementia to slow progression and make the symptoms more manageable
• access support services and benefits
• maintain independence for longer
• plan for the future

Disclosing information

Discussing sexual orientation or gender identity with health and social care professionals and other support organisations and groups may be difficult. These tips may help.

• Only share information if you feel comfortable. Being open about sexual orientation or gender identity can help professionals provide inclusive, tailored care and support, but there is no obligation to do so
• Consider sharing information that you feel is appropriate to the circumstances. You can always share more at a later date
• Look for signs that the service you are accessing is inclusive and supportive of the LGBT+ community as this may make you feel more comfortable in sharing personal information. There may be posters on the walls, or staff may wear badges that show their support
• Consider creating a life story: a record of important information such as personal history, interests and relationships, which can be shared with professionals to help them understand your needs and preferences

Choosing dementia care for a person from the LGBT+ community

If you are thinking about home care or a move into a care home for an LGBT+ person with dementia, it is important to look for an inclusive, supportive care provider. You may see evidence of this, such as promotional materials that use LGBT+ images and staff pronouns displayed on name badges.

You may also like to ask the care provider directly about its equity, diversity and inclusion policy and any training in LGBT+ and dementia awareness that staff have completed.

Planning for the future as a member of the LGBT+ community

It is important for the person with dementia to discuss their wishes for the future with family, friends and health and social care professionals.

For many reasons, people from the LGBT+ community may lack biological family support and class others who they have close relationships with as family – often known as their ‘family of choice’. However, health and social care professionals do not always recognise these relationships, leading to significant people being excluded from important conversations and decisions.

Putting formal plans in place for the future can help ensure that the people who are closest to the person with dementia are fully involved in discussions. This means they can make the person’s preferences and wishes known, and ensure any decisions are taken in their best interests.

Advance care plans

An advance care plan formally documents a person’s wishes for their future care and support. This will help ensure the person’s views are documented so that future care is inclusive and respectful of their needs. It covers things like:

• how the person would like to be cared for, and who by
• medical treatments they do and do not want
• where they would prefer to die (home, care home, hospital, hospice)
• their funeral wishes and any arrangements that have been made
• details of their Will
• their personal, spiritual and cultural values and how they should be respected
• who they would like to be involved in making decisions if they can no longer do so themselves

An advance care plan can support the person to make decisions about the information they wish to disclose around their sexuality or gender identity; how they may wish to be identified; and the care they receive. You may like to use our advance care plan template.

Lasting power of attorney

Lasting power of attorney (LPA) is a legal process appointing one or more trusted people to make decisions on the person’s behalf if they lack the mental capacity to do so themselves. There are two types of LPA:

• health and welfare decisions
• property and financial affairs

Making an LPA means the person with dementia can choose who they would like to make decisions in their best interests. They can nominate someone who understands their wishes, values and preferences so they receive care and support that meets their individual needs.

LPA is valid in England and Wales. In Scotland, the equivalent is power of attorney (PoA). In Northern Ireland, it is known as enduring power of attorney (EPA), but this covers only financial affairs and not health and welfare.

Sources of support

Support from Dementia UK

Dementia UK is committed to supporting members of the LGBT+ community who are affected by dementia. We can support you with issues such as:

• getting a memory assessment
• looking after your brain health
• adjusting to the diagnosis
• caring for an LGBT+ person who is living with dementia
• managing symptoms of dementia in relation to the person’s sexuality or gender identity
• difficulties in recognition of families of choice and relationships between carers and services
• discussing any concerns about health professionals involved in the care of the person with dementia
• signposting to local support services

If you would like support from a dementia specialist Admiral Nurse, you can contact our free, confidential Dementia Helpline on 0800 888 6678 or at helpline@dementiauk.org. If you prefer, you can book an online or phone appointment.

LGBT+ charity organisations

• Age UK: LGBT+ support groups for older people
• Hourglass: information and support for older people experiencing or at risk of abuse or neglect
• LGBT Foundation
  Helpline: 0345 330 3030
• LGBTQ Dementia Advisory Group: a network committed to improving the lives of people affected by dementia who identify as LGBTQ+
• Rainbow call companions: telephone befriending for LGBT+ people over 75
• Speak out for dementia: online peer support group for LGBT+ people living with dementia
• Stonewall: information, support and guidance on LGBT+ inclusion
• Switchboard Dementia Project