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LGBTQ+ and dementia: Unique challenges and finding support

Learn how to support LGBTQ+ individuals with dementia and discover how our Admiral Nurses tailor their support for members of the community.

    Living with dementia is challenging for anyone, but LGBTQ+ individuals face unique obstacles due to discrimination, lack of specialised support, and potential biases. This page explores these challenges and offers support resources for the LGBTQ+ community.

    Challenges that LGBTQ+ people face as well as living with dementia:

    • judgement and discrimination, including homophobia, transphobia and hate crime
    • a lack of specialised support services and resources to meet their specific needs
    • receiving unequal treatment compared to heterosexual people
    • inappropriate curiosity about their sexuality and preferences
    • invisibility of LGBTQ+ carers which can lead to exclusion from life-changing decisions, such as advance care planning – there is often inadequate recognition of people’s ‘families of choice’

    These challenges may mean that members of the community who are living with dementia are reluctant to engage with health and care services. They may avoid being fully open and honest about aspects of their life that may be affecting their physical and mental health. Some avoid accessing healthcare altogether.

    Together, these factors can lead to poorer health outcomes for LGBTQ+ people who live with dementia, their partners and the people who care for them.

    Tips for partners, family and friends of LGBTQ+ people affected by dementia

    When speaking to health and social care professionals, disclose only what you feel comfortable with. Informing them of the person’s sexuality and gender identity may help the professional provide person-centred care, but there is no obligation to do so.

    Be aware that sexuality or gender identity may fluctuate in people with dementia. For example:

    • a person with memory issues may not remember that they have come out as LGBTQ+, which could cause anxiety about family, friends or professionals finding out – when they actually already know
    • a person who has transitioned from their assigned gender may not be able to recall their transition and experience times where they revert to their gender at birth
    • a person with reduced memory may unintentionally disclose their gender identity or sexuality where they have chosen not to before – which could also have implications for their partner
    • Support the person as they identify at the time of speaking with them, even if this is different from their usual identity
    • Be aware of the person’s life experiences. Reminiscence is beneficial for many people with dementia, but certain memories might trigger past trauma caused by discrimination, prejudice or abuse
    • Consider putting together a record of important information about the person, such as a life story, which could include details of their sexuality or gender identity. This can be given to professionals who are involved in their care, eg hospital or care home staff
    • Do report any prejudice or discrimination from professionals – this could lead to positive changes in how they support people. All health and care services must have a complaints policy explaining the steps to follow
    • Find out about specific groups for LGBTQ+ people and carers: please see Sources of support below for organisations that offer support

    Tips for professionals for supporting LGBTQ+ people with dementia

    Within the community, the relationship between people may not always be obvious, particularly in same-sex couples, so avoid making assumptions about a person’s sexuality, gender identity and relationships. For example, do not assume that the person who accompanies them to an appointment is their brother/sister rather than their same-sex partner.

    Asking open questions such as, “Who are you closest to?” can help start a conversation about the person’s life and relationships. It gives them the opportunity to disclose any information about their sexuality or gender identity that they would like to share, without pressure.

    Be mindful of people’s ‘family of choice’. For many reasons, a person from the LGBTQ+ community may be less likely to have biological family support and therefore class others who they have close relationships with as family.

    Make sure you consider this when important decisions are made, such as advance care planning, so the people who are closest to the person have every opportunity to be involved.

    Attitudes towards the LGBTQ community – then and now

    The history of the LGBTQ+ community is shrouded in judgement, negativity and fear. Homosexuality was classed as a criminal act until 1967 in England, 1980 in Scotland and 1982 in Northern Ireland. It was also classified as a mental illness until 1973.

    Although attitudes are changing and there is now more acceptance of the LGBTQ+ community, this legacy still has a big impact on the generations of people with dementia who lived through these times. And with dementia being most common in people aged 65 and over, it is important for all of us to show inclusivity, offer reassurance and create safe, non-judgemental spaces.

    How Dementia UK is supporting the LGBTQ+ community

    Our specialist dementia nurses, known as Admiral Nurses, provide expert practical, clinical and emotional support to families living with dementia. As registered nurses, we treat people without judgement so that members of the LGBTQ+ community who live with dementia can access support without fear of discrimination.

    We know that the needs of LGBTQ+ people are under-recognised, and Dementia UK is investing in this area to make sure we can reach into the community to provide the best possible support and access to Admiral Nurse services.

    Sources of support for LGBTQ+ living with dementia

    To speak to a dementia specialist Admiral Nurse about supporting a member of the LGBTQ+ community or any other aspect of dementia, please call our Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm) or email helpline@dementiauk.org.

    If you prefer, you can book a phone or video appointment with an Admiral Nurse.