Dementia and the lesbian, gay, bisexual and trans (LGBT) population

Monday 26 September 2016

Dementia impact

Dementia is an umbrella term for a number of syndromes, effecting 46.8 million people worldwide and 850,000 people in the UK alone with the number of people affected globally estimated to increase to 131.5 million by 2050.

 

LGBT population

There are no census records of the numbers of lesbian, gay, bisexual and trans[1] (LGBT)[2] people in the UK, although there is a move towards including sexual orientation and gender identity on population surveys. However, population surveys with optional sexual orientation questions often find very low numbers of LGB people. This may well be that people are reluctant to disclose their sexual identity. Population surveys do not currently collect gender identity data beyond male or female categories. A broadly accepted estimate is that lesbian, gay and bisexual people form around 6% of the UK population although there is no reliable concrete evidence of numbers as the UK Census doesn't ask about sexual orientation (although it may do in 2021).

 

Older LGBT people

There are  estimates that the UK is home to 1.2 million older lesbians and gay men.  

Evidence suggests that older people (aged 65+) are less likely to identify themselves as LGBT than younger people. Therefore this figure is likely to be an underestimate.

Older LGBT people will have grown up in a society that pathologised homosexuality and for a time lived in fear of criminality. Indeed homosexuality was illegal in the UK until 1967 and remained classified as a mental illness until 1973. It was Evelyn Hooker’s work that was key in changing this myth. Older LGBT may have experienced the criminal justice system or been given/offered medical treatment to ‘cure’ them of their homosexuality. This is known as reparative therapy and it is not supported in any form in the UK. This experience of the legal and psychiatric systems is especially important within dementia services when dependency in the healthcare setting is even more necessary.

LGBT people with dementia – triple stigmatisation

LGBT older people experience stigmatisation, firstly because of their sexual and/or gender identity and secondly because of stigma associated with old age. This experience of double stigma leads to a cumulative health inequality.  However LGBT older people with dementia form a specific minority that experience disadvantage, discrimination and prejudice that impacts their health and social care experience, leading to health inequalities and unmet needs. Their age, their gender/sexual identity and their cognitive impairment bring a triple marginalization to this group.

Older LGBT people are more likely to be isolated – they may be estranged from their families and they are less likely to have had children – thus they lack the (family) support that heterosexual people with dementia may have greater access to. This increases LGBT people’s need for dementia care services.

 

Dementia services need to recognise LGBT people and their needs.

The Equalities Act 2010 means that health and social care services have a legal duty to address needs of LGBT people affected by dementia. We already know that people with dementia experience invisibility and a lack of recognition within dementia services.  What is already difficult is made worse as health and social care professionals frequently reinforce this by assuming everyone in care is heterosexual. In fact, many care providers and carers report never encountering anyone with dementia who is LGBT. This risks further silencing LGBT people and makes it more difficult for them to feel able to come out.

 

Coming out as LGBT in care

We already know that being able to disclose one’s sexuality (‘coming out’) to a mental/health care professional means it is easier for someone to look for help and is known to result in better communication and greater care-related satisfaction. In a care home situation, the presence of someone’s same-sex partner will make someone’s sexual identity known to care home staff. Receiving services at home will make the need to disclose even more urgent.

 

Some specific issues affect LGBT people with dementia in care.

LGBT people are always coming out each time they access services or encounter a new care provider and they are always determining when it is safe to do so. This is a life long issue and affects older people too. Someone who is LGBT with dementia may well have lost their capacity to assess when and where it is safe to disclose their sexual/gender identity. And dementia can be exposing - increasing cognitive impairment and confusion can lead to inadvertent disclosure. Or they may decide to not disclose at all.  By not disclosing, by remaining silent, LGBT people with dementia are more likely to have unmet long term care needs – moreover they may choose to not use services at all. Knowing there are others there or knowing that the care services are LGBT friendly will provide a safe environment for LGBT people to seek care and help when needed and feel safe to come out and stay out.

 

Recommendations

1. LGBT friendly dementia services

LGBT friendly services allow people of all sexualities to feel welcome. Services could clearly display their equality policy or have LGBT material clearly showing or use images that represent people from LGBT community. This report just published by the National Care Forum has some great suggestions for to make dementia organisations LGBT-friendly:

 

• promote diversity, inclusion and present the environment as non-discriminatory; with same-sex couples in marketing materials, for example

• design reminiscence activities sensitively and appropriately, to avoid returning people to a challenging period in their sexuality or gender identity

• build an awareness that LGBT people might have a wide support network involving those who are not conventional family members

 

2. LGBT Health

It is important to understand LGBT dementia within a wider context of LGBT health.

There is wide evidence that LGBT people experience chronic stress and more mental and physical health problems because of discrimination, prejudice and stigma associated with their gender and sexual identity. Research tells us that it is this very real experience of discrimination that leads to this increase in depression, and anxiety and also higher rates of smoking and alcohol use.  The difficulties LGBT people with dementia face emerge within a context of problems they may have already experienced with their health and well-being and of heterosexist and homophobic  (healthcare) experiences they may have already suffered.

 

3. Training

Health and social care staff who are providing care for people with dementia require education and training to improve their knowledge of sexuality and gender identity issues. Indeed training is key in addressing behaviours and attitudes that stem from a lack of knowledge, lack of awareness and thus important in preventing discriminatory practice and resultant health inequalities. There are wide benefits from health and social care staff being trained to be sensitive and aware of differing sexualities and remaining non-judgemental. However this training needs to be integrated within all dementia training and not provided merely as a token session on diversity. Awareness of diverse sexual and gender identities (and the diversity within those) should be present throughout health and social care training. Moreover, the inclusion of LGBT issues and dementia training could be usefully integrated into the undergraduate curriculum for healthcare professionals.

 

4. Research and data monitoring

The lack of knowledge about the impact of dementia on LGBT communities reflects the lack of research in this field. What is needed is not only research that captures the LGBT experience of having dementia and caring for a person/partner with dementia, but also funding streams explicitly for LGBT research. Secondly research with care staff and care providers is needed to allow the development of interventions to improve care and services for LGBT people affected by dementia. There is also a clear need for larger sample studies including population based data, which should include the routine collection of both sexual orientation and gender identity monitoring data, offering an opportunity to determine the number of LGBT people with dementia and develop interventions to address their specific care needs.

 

 

Dr Joanna Semlyen is a Health Care and Professionals Council (HCPC) Registered Health Psychologist, a British Psychological Society (BPS) Chartered Psychologist and an Associate Fellow of the British Psychological Society. She works at Norwich Medical School at the University of East Anglia.

Her research focuses on the mental and physical health of minority and vulnerable groups and she has a particular expertise in the area of health inequalities in gender and sexual minorities.  She has published in the areas of physical and mental health, health psychology, psycho oncology and dementia and recently has published UK longitudinal population health indices in LGB populations.

 

 

Email j.semlyen@uea.ac.uk

Twitter  @Dr_Jo_S

www.researchgate.net/profile/Joanna_Semlyen


[1] Trans can refer to transgender, transsexual and other non-binary genders. Throughout this review, the term trans will be used.

[2] The phrase LGBT has become common parlance for issues relating to non-heterosexual community. However this phrase encompasses both sexuality and gender identity. Gender identity is not a sexual orientation. Trans people may be lesbian, gay, bisexual or heterosexual.