On 26 April 2023, Alzheimer Europe held an online Alzheimer’s Association Academy session, focused on the topic of “Dementia and the LGBTQ+ community”. The event featured presentations from three speakers and was attended by 33 participants from 15 countries. Dianne Gove (Director for Projects, Alzheimer Europe) was the moderator for the session.
The first presentation was given by Paddy Crosbie, who lives in Dublin and cared for his late husband Derek who sadly passed away in November 2021. Paddy has been involved with the Dementia Carers Campaign Network in Ireland under the auspices of The Alzheimer’s Society of Ireland (ASI), since it began in 2013. He has been involved in policy consultations, political advocacy, raising awareness of the issues affecting carers of those living with dementia, through media, and using the arts as an innovative way of communicating to a wider audience outside the dementia community. Prior to retiring early to care for Derek, Paddy worked in local government. Paddy shared some very personal and moving insights both into his role as a carer for his husband, as well as into their relationship and some of the difficulties they encountered as a gay couple, in their life together and in their friends’ lives, with homophobia and violence. They were concerned that this could be an issue in accessing the care they needed, but they were pleasantly surprised and perhaps lucky (though of course this should not be a matter of luck) to receive excellent and unbiased support.
At the time of Derek’s diagnosis, at the Memory Clinic at St James’s Hospital in Dublin, the couple met with social worker Matthew Gibb who helped them immensely, both to feel more confident that they could “get through this” and to learn about the Irish Dementia Working Group (IDWG) which was being set up and which the couple felt would provide welcome cognitive stimulation as well as allowing Derek and others with dementia to have their voice heard. Derek became a founding member of the IDWG and his involvement slowed his need for full-time care and was a highly positive experience. The need for full time care, however, did arise and so it had to be identified and resourced, and because he was under the age of 65, Derek wasn’t initially entitled to home care. The context, when they began looking for support, was also very difficult, as they were not legally recognised as a couple (Ireland legalised same-sex marriage in 2015). Derek’s mother was considered as his next of kin and not Paddy, which was frustrating. Paddy also knew Derek would want a male carer and would not be comfortable with a female carer. It took about three months to get the required care in place, but when it eventually happened, the carer, a Welsh man called Stephen, was fantastic as he fully understood and accepted their relationship as a gay couple, considered both of their needs and opinions and was sensitive to Derek’s desire to continue to do as much as he could.
Luckily things changed in Ireland just as Stephen was about to start working with them and Derek then qualified for home care, which helped reduce the large financial impact. As Derek’s condition progressed, they had to agree to a rota of three carers, though Paddy was initially resistant to this, largely due to the couple’s history. When he and Derek met in 1988, homosexuality was illegal (it became legal in Ireland in 1993) and so the couple, and particularly Derek, were understandably concerned about discrimination and also about potential violence against them. Derek had never wanted to bring strangers into their home, as he had witnessed, first hand, bricks being thrown through windows of friends in same-sex couples. Strangers therefore made him nervous at times. That residual fear stayed with Paddy when accessing care for his husband and he was careful to ensure that there was not a parade of different strangers coming into the house. This approach made it difficult, at times, to get any care at all, as the three carers they had agreed to were not always available. Paddy then sought out day-care services, which were provided by the ASI. It was really important to him to always be upfront about their relationship when seeking any services for Derek. but It was such a pleasure, he said, to engage with the ASI, as he felt they were “embraced” by the staff there. In April 2020, Derek collapsed at home. This was the start of the COVID pandemic, as Paddy was not allowed to go with his husband in the ambulance and during the eight weeks Derek remained in hospital, they were not allowed to see each other. It was hard enough to be apart, but even harder for Paddy to realise he would no longer be able to look after Derek at home, a concern that was confirmed by the consultant at the hospital. This meant having to try and find a nursing home during COVID. A daunting task, especially given that so many nursing homes are still run by the Catholic Church in Ireland, which could present a problem for a gay couple. Thankfully, he found a newly-built, privately-run nursing home and which was superb from that point of view.
All in all, the most difficult thing for Paddy was not accessing or connecting with care services but rather it was seeing his other half being taken away, bit by bit. “There is no pathway for that and each day is different, so you have to hope what you are doing is right”, he said. In closing he said that he was very proud of his country, Ireland, for having made important social and legal changes around LGBT rights and same-sex marriage. He also said that he hoped his legacy in all of this would be to show others not to be afraid to stand up and say who they are. It is hard, he conceded, but being honest is the best way and in doing so he was able to achieve a much better quality of life and level of care for Derek, which made him feel proud.
The second speaker was Dianne Gove, who gave some background to Alzheimer Europe’s work on sex, gender and sexuality, noting that the main goals were to raise awareness of gender identity and sexuality in the context of dementia amongst health and social care workers; to look at how sex, gender and sexuality impact on the everyday lives of people with dementia and; to promote the right of every person with dementia to be treated with respect and to have access to timely diagnosis, treatment and good quality care and support. She explored attitudes to and the impact of classifications of sex and gender on people’s lives. She described how it is often assumed that people with dementia are heterosexual (“straight”), married or have been married, and that they are either male or female. She explained that this reflects what is known as heteronormativity, namely the assumption that everyone is straight, that romantic and sexual relationships are always between one man and one woman, that this is the only normal or natural way to express sexuality and attraction and that people all identify (in terms of gender) with the biological sex they were given at birth (“cisgender”). This is all seen as the norm and everyone else is therefore considered as deviating from the norm, which affects people in many ways, and fuels homophobia and transphobia.
For many people from LGBTQ+ communities, particularly older people who may have experienced extreme prejudice, discrimination and violence, the management of gender and sexual identity can be very challenging, even more so if they have dementia. She then explored some key concepts, focusing on people from LGBTQ+ communities, including: coming out (from the metaphor “coming out of the closet”, when LGBTQ+ people share their sexual orientation or gender identity with the people around them); passing (when a person presents themselves as belonging to a certain group or category different from their own e.g. if a gay man presents himself - and is usually therefore considered by others - as heterosexual, he is “passing” as heterosexual; being outed (when someone else shares another person’s sexual orientation or gender identity without their consent; either by accident or on purpose); homophobia and transphobia; authenticity, whereby passing can be particularly challenging for trans people and even more so for intersex people who, within the context of binary sex and gender identities, have no option other than to “pass”. The act of “passing” is complicated because it is often seen as a form of deception, while for trans people it can be the exact opposite, in that it is a means of expression of their true and authentic selves. She also discussed “microaggressions” (subtle verbal or nonverbal behaviour, committed consciously or not, that is directed at a member of a marginalised group, and has a harmful, derogatory effect), giving some examples in the context of dementia care.
Regarding the importance of the right to relationships and a sexual life, Dianne gave some examples of informal restrictions of legal capacity in relation to sexuality and explained that in care homes sexuality is often seen as a challenge or a medical problem to be controlled and that the fear of discrimination and abuse may lead to many people hiding their gender and sexual identities. In closing, she stressed that, at the individual level, there is a need for people to challenge blatant or subtle discrimination, hostile attitudes and behaviour, inappropriate humour and banter, violence and microaggressions towards LGBTQ+ people; while at a societal level, she highlighted the need to ensure that unequal and discriminatory power structures and societal inequalities are taken on board by policy makers, researchers, health and social care professionals and the general public so as to develop a more ethical, inclusive and humane society for people of all gender identities and sexual orientations.
The final speaker was Claudio di Lorito (he/him), a Research Fellow at University College London. He holds a PhD in Psychiatry from the University of Nottingham and an M.Sc. in Mental Health Studies from King’s College, London. Claudio has an international experience in dementia research with a particular interest in underserved communities. The emphasis of his presentation was on examining whether or not dementia services and support organisations are currently managing to meet the needs of LGBT people living with dementia, as well as the needs of their carers. He began by noting that his presentation used the acronym LGBT (Lesbian, Gay, Bisexual and Transgender) for convenience, although he highlighted that LGBTQIA+ is more inclusive of people who are “queer” or “questioning”, “intersex”, "asexual," "aromantic," or "agender” and those who are part of the community, but for whom these letters do not accurately capture or reflect their identity. He proceeded to give some background about LGBT communities and dementia and stressed that there was a bare minimum of 21,000 people currently living with dementia in the UK, who are also members of the LGBT community. Issues of Equality, Diversity and Inclusion are becoming increasingly considered in dementia care, he said, also noting that dementia in LGBT communities is becoming a subject of interest and investigation. So far, however, little empirical research has been conducted and published in this area and research is essential to drive policy and service development. He gave details of a literature review which looked at the status of dementia support for LGBT communities and which had looked at some of the distinct experiences and needs of LGBT people living with dementia and those who care for them: https://pubmed.ncbi.nlm.nih.gov/34842010/
He also shared some of the barriers to addressing the needs of LGBT people living with dementia and those who care for them, including poor representation/visibility of LGBT people in dementia services, unpreparedness of support care staff and heteronormative reminiscing activities, programmes based on male-female gender roles, cultural background of staff, locality and hesitancy of LGBT communities to seek support due to the impact of historical events, and the experience of discrimination in services, which often remains unreported. Some of the implications of the current problems in service provision were that people living with dementia from LGBT communities are underrepresented in research and underserved in clinical practice. Dementia services are unprepared to address the distinct needs and experiences of LGBT people living with dementia and those who support them and although examples of good practice exist, there is a need to develop dementia training which is inclusive of needs of LGBT people living with dementia and their families. Claudio ended his presentation by looking ahead to next steps and sharing his hopes for the future. He and his colleagues built up a team of international experts in the field, obtained partnership from LGBT and dementia voluntary organisations and letters of support from NHS Trusts and, together, they developed a research proposal for Rainbow-PATHS, a new resource for dementia services to become more inclusive of LGBT people living with dementia. Rainbow-PATHS will be co-designed with LGBT communities, voluntary organisations, and professionals. Alzheimer Europe’s next online Alzheimer’s Association Academy session will be held on 4 July and the topic will be “Promoting continence in dementia”.