LGBTQ people with dementia should not be forced back into the closet

This article comes to us yet again from the UK-based source, The Guardian.

There are 1.2 million older lesbian and gay people in the UK, yet they are an invisible population

older gay couples

Social care services tend to assume that older service users are heterosexual. Photograph: David Poller/Zuma Press/Corbis

A colleague recently told me about two older male residents in a care home where she once worked. Staff initially supported the burgeoning friendship between the pair, who both had dementia. However, when it became obvious the men were attracted to each other and might develop a relationship, support workers stopped seating them together and threatened to tell relatives.

This is just one example of the challenges faced by older LGBT (lesbian, gay, bisexual and transgender) people in social care. February was LGBT History Month, a timely reason to consider how the social care workforce supports the ageing LGBT community.

A new piece of work explores the needs of this community, asking how to provide its members with more appropriate support. The National Care Forum, which represents UK not-for-profit health and social care providers, is working on the project with the National LGB&T Partnership plus Sue Ryder and the Voluntary Organisations Disability Group under a Department of Health partnership.

Our partnership will disseminate practical case studies and create a toolkit for commissioners to support the specific needs of older LGBT people. It cannot be right that people from the generation that fought hard for equality are forced back into the closet when they receive social care.

As the first part of our project, we have published a paper, The dementia challenge for LGBT communities. It is vital we raise awareness. Estimates suggest there are 1.2 million older lesbian and gay people in the UK, yet they are an invisible population and rarely acknowledged by service providers and commissioners. In its 2011 briefing, Working with lesbian, gay, bisexual and transgender people, the Social Care Institute for Excellence states that “commissioners and providers don’t often think about LGBT people when planning and delivering services, but this does not mean that LGBT people are not using services or do not want to use services.”

In addition, dementia is at the top of the national agenda (by 2025, says the Alzheimer’s Society, there will be an estimated 1 million people with dementia in the UK), but there is no specific reference to LGBT issues in the National Dementia Strategy. Given LGBT older people may be estranged from their relatives and lack family support, formal care is likely to be even more important than it is for their heterosexual peers.

We know where some of the biggest challenges lie. For example, prejudice – current or historic – can affect how someone perceives and experiences support. While some lose their inhibitions due to dementia, others who have previously come out feel unable to be open about their sexuality or transgender status. Dementia causes anguish and confusion; this experience could be exacerbated as older people with the condition struggle to deal with negative perceptions of their sexuality or gender in residential care.

Another major barrier is the lack of research. As the 2010 Equality and Human Rights Commission report Don’t Look Back states: “Older LGB people have been overlooked in health and social care legislation, policy, research, guidance and practice, which assume service users are heterosexual.”

So what of the solutions? Some campaigners believe LGBT-specific residential care for people with dementia might be one answer. Yet, apart from the fact that public funding for such developments is unlikely in the current financial climate, many people do not want to live in LGBT-only care settings. What is preferable, they say, is “LGBT friendly” dementia support in mainstream settings – which relies less on funds and more on cultural change and staff training.

To achieve this, we need to develop more good practice. Incorporating real-life stories of LGBT people in the training of dementia support staff will help to make the issue more well known. In addition, we need to replicate the work of the care providers that bring together service users into discussion forums. This can influence staff practices and give older LGBT people an unprecedented, supportive platform to voice concerns.

Commissioners are crucial to improving standards of care. By including awareness of the needs of LGBT older people in contracts, care commissioning can be more sensitive and demand more appropriate responses from providers. In turn, the Care Quality Commission regulator can place pressure on commissioners to do more to address support for ageing LGBT communities.

The dignity in care agenda is of growing importance in our sector, but we must ask if its core values of respect and compassion truly extend to all those we support. While part of the solution rests on wider changes in social attitudes towards older LGBT people, there is much that we as a social care workforce can do to lead the way.

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One thought on “LGBTQ people with dementia should not be forced back into the closet

  1. Pingback: LGBTQ carers | Doctor Dementia and the Dementia Adventure

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