Empowering the Voices of LGBT Individuals with Dementia

A seminar in London organised by the Dementia Engagement and Empowerment Project (DEEP) and facilitated by myself, was attended by over 40 people this week, to discuss how we can give greater individual and collective voice to lesbians, gay, bisexual and trans (LGBT) people with dementia. Attendees included dementia service providers and advocates, older LGBT service providers and advocates, older LGBT people themselves, and academics working in the field of LGBT ageing and/or dementia. There were three excellent speakers: Rachael Litherland from DEEP; Sally Knocker (trainer, consultant and writer) and Dr Elizabeth Price (Senior Lecturer, University of Hull). Two short films were shown: one from Opening Doors London (which includes a gay men with memory problems in need of befriending and extra support) and a training clip from GenSilent (which features, among others, a gay couple dealing with one partner’s dementia; a lesbian couple pondering their future care needs; and a trans women who is dying, is estranged from her family, and lacks support). One of the most amazing things about the seminar was that it started without us! Many people arrived early, some by almost an hour, and struck up vibrant and deeply engaged conversations. These continued even after we introduced the planned bits of the seminar, and went on over the tea break, and into the group discussions which then followed.

LGBT individuals with dementia are not one homogenous group (1). As dementia is age-related and women outlive men, then older lesbians and bisexual women are likely to be disproportionately affected by dementia (women outnumber men with dementia 2:1) (2). This, together with relatively diminished social support in later life, means that older lesbians are likely to also be disproportionately represented in care homes for people with dementia. By contrast, gay and bisexual men who do find themselves in those spaces will be a minority in a minority due to both gender and sexuality. Many LGB people are impacted by the lack of recognition of LGB carers of someone with dementia (3) and of LGB health and social care service users, including in dementia provision (4). This is nuanced by gender: older women are particularly concerned about being around potentially sexually disinhibited behaviour of heterosexual men with dementia; and many older lesbians and gay men want integrated provision, but many also want gender and/or sexuality specific care. This is also nuanced by sexuality: many bisexual individuals suffer from the disappearing ‘B’ in LGBT (5), being assumed to be heterosexual if single or in a relationship with a person of another gender and being assumed to be lesbian or gay if in a relationship with someone of the same gender.

Trans individuals (who may or may not identify as LGB) are concerned with both shared and particular issues (6). Those particularities include: concerns about transphobia; being worried about not being able to cross-dress; being very concerned about receiving personal care if their physical bodies are not congruent with their gender performance; and, among those who have transitioned, being concerned that if they have dementia, as it progresses, they may no longer remember that they have transitioned, and may revert to performing according to the gender which they were assigned at birth.

A wide ranging number of themes emerged across the seminar. These included: the issue of how to ‘find’ LGBT people with dementia who may be hidden both by their dementia and by their sexualities and/or gender identities; the importance of making sure any project which aims to empower LGBT people with dementia is driven by LGBT people with dementia; concerns about heteronormativity, homophobia, biphobia and transphobia among dementia service providers and dementia service users; the importance of training and practice development among service providers (7); the importance of both mainstream providers and the LGBT ‘community’ taking responsibility for addressing these concerns; and the need to take into account the needs of queer/polyamorous/non-labelling individuals with dementia who can often be hidden in generic LGBT discourse.

All attending the seminar were agreed that it was a very successful and stimulating event, and hopefully would lead on to the development of a number of different projects which will give greater voice to LGBT individuals with dementia in the future. A range of possibilities were discussed, including making mainstream dementia advocacy more inclusive of LGBT individuals with dementia, and LGBT intergenerational projects, which would involve LGBT befrienders supporting LGBT individuals with dementia. DEEP will be keeping all those who attended informed in future developments. Anyone wishing to know more, should contact the Dementia Engagement and Empowerment Project (DEEP)

(1) Newman, R. and Price, E. (2012) ‘Meeting the Needs of LGBT People Affected by Dementia,’ in R. Ward, I. Rivers & M. Sutherland Lesbian, Gay, Bisexual and Transgender Ageing: Biographical Approaches for Inclusive Care and Support, pp183- 195, London: Jessica Kingsley. [Accessible via: http://bit.ly/1dGiQCb]

(2) Knapp, Martin, et al. (2007) Dementia UK: a Report to the Alzheimer’s Society. London: Alzheimer‘s Society.

(3) Price, E. (2012) ‘Gay and lesbian carers: ageing in the shadow of dementia’, Ageing & Society, 32: 516-532.

(4) Ward, R., River, I. & Sutherland, M. (eds) (2012) Lesbian, Gay, Bisexual and Transgender Ageing: Biographical Approaches for Inclusive Care and Support, London: Jessica Kingsley

(5) Jones, R. (2010) ‘Troubles with bisexuality in health and social care.’, in: Jones, Rebecca L. and Ward, Richard (eds) LGBT Issues: Looking beyond Categories. Policy and Practice in Health and Social Care (10), pp 42-55, Edinburgh: Dunedin Academic Press, pp. 42–55.

(6) Auldridge, A., et al (2012) Improving the Lives of Transgender Older Adults: Recommendations for Policy and Practice. New York: Services and Advocacy for GLBT Elders and National Center for Transgender Equality

(7) Suffolk Lesbian, Gay, Bisexual and Transgender Network (2012) Providing Quality Care to LGBT Clients with Dementia in Suffolk: A Guide for Practitioners; Alzheimer’s Society (2013) Supporting lesbian, gay and bisexual people with dementia. Alzheimer’s Society Factsheet 480. London: Alzheimer’s Society:

Older People’s Day – Including Older LGBT people

It’s Older People’s Day in the UK on 1st October, and it seems timely to flag the particular issues affecting older LGBT people, who are an under-recognised and under-served group of individuals. Yet their numbers are growing. It is estimated that between 5-7½% of the population have a ‘non-heterosexual’ identity. This means there are between 61,000 and 122,000 ‘non-heterosexual people’ over 60 living in the UK today, and this figure is set to rise to between 881,000 and 1,763,000 by 2030. Older LGBT share many of the issues and concerns of all older people, but their ageing can be made more complicated by their sexualities, gender identities and histories (1).

According to a recent UK survey comparing over 1,000 older LGB people and 1,000 older heterosexual people (2), older LGB people are more likely to be single and to live alone, less likely to have children and are less likely to see biological family members on a regular basis.  Older LGB people are also more likely to suffer from the consequences of a lifetime of minority stress (stigma and marginalisation) and as a result are more likely to drink alcohol, take drugs and smoke than older heterosexual people. They are more likely to have a history of mental health problems, and to have current concerns about their mental health, particularly depression. This can be linked to bereavement following the deaths of partners and/or close friends, which often goes unrecognised (3).  Many trans people are also estranged from their families, and continue to be regarded as mentally ill under the psychiatric diagnosis of ‘gender dysphoria’ making them particularly wary of engaging with mental health services (4).

With less intergenerational support than their heterosexual peers, older LGBT are more likely to need formal social care, and at an earlier age, than older heterosexual people. Yet at the same time, the majority of older LGBT people are very worried that health and social care providers will not be able to recognise or meet their needs.  Many feel they would have to hide their identities from care staff and/or fellow service users (the older people are, the more they carried the prejudices of the past, (5)). Many are worried that they will be unwillingly exposed by their own or a loved one’s dementia (6). Many are fearful that they will spend the final years lonely and isolated, estranged from loved ones, in care homes where their lives and identities are either not recognised or not valued and validated (7).

We need to ensure that all older people are recognised and respected for who they are, and that includes older LGBT people. We also need to know much more about the lives, needs and wishes of older LGBT people, and this is where the ‘Minding the Knowledge Gaps’ project comes in. This project is funded by the Economic and Social Research Council (ESRC) and is co-organized by Andrew King (PI), University of Surrey, Kathryn Almack (University of Nottingham), Yiu-Tung Suen (University of Oxford/Chinese University of Hong Kong) and Sue Westwood (Keele University). The project involves a series of six themed seminars followed by a final conference, aimed at exploring gaps in knowledge and research about LGBT ageing, and identifying ways to address those gaps. For more information, go to the ‘Minding the Knowledge Gaps’ project. A further project of interest is ‘The Last Outing’ . Based at the Sue Ryder Centre, Nottingham University, the study is exploring end of life care experiences and concerns of older LGBT people.

Both projects can be followed on Twitter: @LGBTageing and @TheLastOuting.

References

(1)  Ward, R., et al (eds) (2013) Lesbian, Gay, Bisexual and Transgender Ageing: Biographical Approaches for Inclusive Care and Support, London and Philadelphia: Jessica Kingsley.

(2)  Stonewall (2011) Lesbian, Gay Bisexual People in Later Life, London: Stonewall

(3)  Almack, K., et al. (2010) ‘Exploring the impact of sexual orientation on experiences and concerns about end of life care and on bereavement for lesbian, gay and bisexual elders.’ Sociology. 44(5): 908-924.

(4) Fredriksen-Goldsen, K., et al. (2013) ‘Physical and Mental Health of Transgender Older Adults: An At-Risk and Underserved Population.’ The Gerontologist doi: 10.1093/geront/gnt021First published online: March 27, 2013

(5)  Valentine, G. & Macdonald, I. (2004) Understanding Prejudice London: Stonewall

(6)  Price, E. (2012) ‘Gay and lesbian carers: ageing in the shadow of dementia’, Ageing & Society, 32: 516-532.

(7)  Ward, R., et al (2011) Don’t look back? Improving health and social care service delivery for older LGB users, London: Equality and Human Rights Commission.

A Darker Side to Care..?

It’s been great to read the diverse blogs on this site and the definite slant given by commentaries on issues of identity and sexuality to the challenge of revaluing care. Some time ago I attended a meeting with some of the other members of this network where we raised the question of what is ‘queer care’. And more specifically, how could we go about finding out how it was practised and what it meant to people? We were interested in the lived realities of care for LGBT people but also whether queer theory could offer a framework for making sense of this experience.
Of the still very limited research on care in the context of LGBT ageing there is every indication that helping relationships are organised rather differently to traditional binary notions of the care-giver and care-receiver. For instance, Ann Cronin and Andy King’s work suggests interdependence over dependence in lesbian and gay relationships.  Research with the trans community by Sally Hines also points to support clusters and collective ways of helping people rather than dyadic carer/caree encounters. While Margrit Shildrick and Janet Price’s joint work on intercorporeality and their notion of ‘two bodies becoming together…’ sheds a very different light on how we think about the body itself and its potential in helping situations. However, the closeness and intimacy signalled by these accounts stand in contrast to findings regarding care for older LGBT people of the more formal/paid variety.
Here, care is an uneasy term, and comes with baggage. This is why it has been all but bracketed off in critical disability studies, with the intention that this may lead to more novel ways of thinking about the helping relationships that evolve between people. Perhaps then a queer approach could also usefully begin by treating care with caution –  after all there’s no saying that ‘revaluing care’ might not lead us to decide it is a less useful term for future understandings of helping relationships rather than necessarily investing it with new worth. Many LGBT people’s experiences invite such a possibility because so much of what is badged as care can be experienced as very negative and damaging. This can range from the wholesale neglect of the individual supposed to be ‘in care’ to a diverse range of sometimes more subtle indicators of disapproval, disgust or rejection communicated verbally, behaviourally, emotionally, viscerally etc. and all of which are enfolded within care practices. To date, these experiences are not well documented, partly because LGBT people in the ‘Fourth Age’ are largely invisible and ignored by mainstream gerontology, as Ann Cronin has pointed out, and often are too concerned for their safety to identify themselves in the context of relying upon care services. Do the assumptions that underpin how we currently think and talk about care serve to perpetuate the cultural silence about this darker side?
Taken collectively, research to date tells us that many LGBT people are afraid of a time when they might require care. Findings in the UK and US have uncovered significant numbers who would rather take their life than be admitted to a care home and many more who report a fear of care that involves body work and the prospect of being exposed to and handled by a care worker (although much of this research has been conducted with fit and independent people being asked to anticipate the need for care rather than describe the experience of it). Ironically, older LGBT people are more likely to require formal care by virtue of being less likely to have children and more likely to live alone, but evidence suggests many delay or refuse altogether the uptake of services due to anticipation of negative treatment and its impact upon their lives. At the very least then, formal care has a serious reputation problem in certain quarters. But research with older LGBT people also suggests it has a dark side – one that is perhaps most visible from certain (queer) standpoints. In our efforts to debate and revalue care maybe we should begin with the perspectives of those who have a close-up on the under-side of care and its darker recesses. And perhaps the place to start in ‘queering’ care is to dispense with the term altogether in an effort to find alternative ways of capturing helping relationships and reconfiguring the terrain of help and support in later life in ways that might feel more acceptable to minoritised groups…?

‘Gender Identity and Health Care Experiences in Australia’ by Dr Damien Riggs

In 2012 and 2013 Dr Clemence Due and I conducted two surveys, the first focusing on the health care experiences of Australian people who were female assigned at birth (FAAB) but who now identify with a different gender identity, and the second focusing on the healthcare experiences of Australian transgender women. Our analyses so far have adopted a comparative approach, primarily because most previous studies of transgender, transsexual or genderqueer people’s experiences of healthcare have not disaggregated findings by assigned sex. We thought that a comparative approach might thus be useful given that research suggests that transphobia is highly correlated with both homophobia and sexism amongst heterosexual, cisgender people (see Riggs, Webber & Fell 2009). These three forms of discrimination are related by the fact that the first two are about attitudes towards gender non-conformity, and the third measures how much an individual subscribes to social norms about (nominally cisgender) gender role conformity. Previous research suggests that transphobia (and cisgenderism more broadly) is gendered, not only in the sense that cisgender men are more likely to be transphobic than are cisgender women, but that people FAAB will experience transphobia or cisgenderism differently than will people male assigned at birth (MAAB). In undertaking a comparative approach, then, our hypothesis was that such differential discrimination would result in different experiences with healthcare providers between the two surveys.

In order to test if it was appropriate to group all responses from people MAAB together as one group, and to compare this with all responses from people FAAB, we first checked to see if there were any significant differences within each group in terms of current gender identity. In each study participants were asked to name their current gender identity. The three main categories used by participants within both of the studies were:

1. Affirmed gender (i.e., simply ‘male’ – used by people FAAB – or ‘female’ – used by people MAAB)
2. Transgender (this included terms such as trans woman, trans girl, trans boi, transgender man)
3. Genderqueer

Statistical testing indicated that both within the surveys, as well as when combining the two samples into a whole, there were no significant differences in between those people who identified themselves using either their affirmed gender, the term ‘transgender’, or the term ‘genderqueer’.

In order to further ensure that focusing on differences between people MAAB and people FAAB was a valid approach, we also looked at whether there were other notable differences across the two samples. We found that:

1. Participants who were older were more likely to have undertaken sex-affirming surgery than participants who were younger,
2. Participants who were older reported more positive levels of mental health than did participants who were younger, and
3. Participants who had undertaken sex-affirming surgery reported more positive levels of mental health than did participants who had not undertaken surgery (as we had already found when looking solely at the first study, see Riggs & Due, 2013).

These initial findings suggested to us that it was possible that the main issue at stake across the samples was age. What we did, then, was control for age in our subsequent statistical testing. This enabled us to examine whether assigned sex (MAAB or FAAB) was a significant predictor of experiences. The answer was yes:

• Participants who were MAAB were more satisfied overall with the support they received from counselors, psychologists and psychiatrists than were participants who were FAAB,
• Participants who were FAAB reported more positive levels of mental health than did participants who were MAAB,
• Participants who were MAAB reported more positive experiences of gender-affirming surgery than did participants who were FAAB,

In addition to differences between participants MAAB and participants FAAB, there were other interesting findings. Some of these highlight areas in need of improvement by (nominally, though not in all cases) cisgender mental and physical health care professionals:

• Participants who reported higher levels of discrimination from health care professionals reported less positive levels of mental health,
• Participants who reported feeling that they frequently had to educate health care professionals about issues related to their current gender identity reported higher levels of discrimination,
• Participants who reported feeling that they frequently had to educate health care professionals about issues related to their current gender identity reported that they felt less respected by the professionals.

So what do all of these findings suggest to us? We of course acknowledge that this was a modest sample (78 people FAAB and 100 people MAAB), though these numbers are similar to those of the pioneering TranZnation report (2007), and they include participants from all Australian states and territories. The findings suggest the importance of taking into account both age and natally assigned sex. These demographics may impact upon people’s experiences due to differing:

• Diagnosis rates of ‘gender dsyphoria’ between people MAAB (0.005% to 0.014% of the population) and people FAAB (0.002% to 0.003% of the population),
• Societal gender norms and expectations of people FAAB and people MAAB, such that experiences of discrimination from the general population, from transgender communities, and from health care professionals will likely differ according to cisgender (and transgender) people’s assumptions about gender norms,
• Degrees of availability and successful outcomes of surgery as perceived by people MAAB when compared to people FAAB (though this is slowly changing, see Cotten, 2012),
• Understandings of gender identity within non-gender normative communities.

The report documenting the full findings is available at: http://www.genderidentityaustralia.com/?p=262

References

Cotten, T.T. (Ed.). (2012). Hung jury: Testimonies of genital surgery by transsexual men. Transgress Press.
Couch, M., Pitts, M., Mulcare, H., Croy, S., Mitchell, A., & Patel, S. (2007). TranZnation: A report on the health and wellbeing of transgender people in Australia and New Zealand. Melbourne: Australian Research Centre in Sex Health and Society.
Riggs, D.W. & Due, C. (2013). Mapping the health experiences of Australians who were female assigned at birth but who now identify with a different gender identity. Lambda Nordica, 5.
Riggs, D.W., Webber, K., & Fell, G.R. (2012). Australian undergraduate psychology students’ attitudes towards trans people. Gay and Lesbian Issues and Psychology Review, 8, 52-62.

Dr Damien Riggs
Senior Lecturer
Flinders University
GPO Box 2100
Adelaide 5001
South Australia

 

 

Trans Mental Health, Transition and Gender Identity Clinics – By Dr Louis Bailey

The Trans Mental Health Study 2012)[1] is the largest survey of its kind within Europe and the first to explore mental health and well-being within the UK trans population.  The survey examined rates of life and body satisfaction within the trans population as well as trans people’s experiences of accessing a range of health and support services (including gender identity services and mental health services), current and past mental health issues, and experiences of daily life.  The full report can be found here.

Impact of Transition on Mental Health

The key finding to emerge from this study was the significance of gender transition in improving mental health and well-being.  74% of the respondents felt that their mental health had improved since transitioning.  85% were more satisfied with their bodies since undertaking hormone therapy, 87% were more satisfied after non-genital surgery and 90% after genital surgery.  Both social and physical changes of gender were shown to have a substantially positive impact on trans people’s self-esteem, happiness and quality of life.  Crucial here was the importance of being able to socially transition as their felt gender identity and having that identity recognised by others.  Alongside and interacting with this was the positive role played by hormonal and surgical interventions, which enabled necessary physical and psychosocial changes to be made.  Such changes reduced instances of Gender Dysphoria and negative body image and, in turn, served to increase confidence, satisfaction and overall well-being.

Rates of self-harming, suicidal thoughts and suicide attempts were high with 53% of respondents having self-harmed, 84% thinking about suicide and 35% attempting suicide at some point over the life course.  However, gender transition was shown to drastically reduce rates of self-harm and suicidal ideation within this group.  Of those that had completed transition, 63% reported having self-harmed, thought about or attempted suicide more prior to transition compared with 3% after transition.   Whilst transition has been shown to significantly reduce rates of self-harm and suicidal ideation, it consequently follows that those who would like to transition but who are unable to or who are experiencing significant delays or set-backs within the healthcare system will be at risk of increased self-harm and suicidal behaviour.

Impact of NHS Gender Identity Services on Mental Health

Whilst treatment for Gender Dysphoria was shown to have a beneficial impact on mental health, the process endured by respondents in order to gain access to that treatment was decidedly negative.  20% of respondents had wanted to harm themselves in relation to, or because of involvement with a NHS Gender Identity Clinic or health service.  The reasons listed included: Long waiting times and delays to treatment, restrictive protocols, inaccurate and unnecessary assessments, being denied treatment, being given the wrong information or advice, receiving negative or inappropriate treatment from psychiatrists, experiencing outmoded attitudes or questions/tests:

  • ‘…some things said to me at my last appointment (specifically that I should accept that my wife and daughters would be better off if I left them) upset me greatly. I left the Gender Identity Clinic on that day and sat in the car crying for over an hour. I decided there and then never to go back.’
  • ‘The Gender Identity Clinic…seemed to have very rigid ideas of masculinity and femininity and seemed to be adhering to a now outmoded medical model…with one my assessors asking me about sex positions, and how this ‘differed from heterosexual sex”‘
  • ‘The GIC expected me to be some stereotypical image of a woman rather than being myself’
  • ‘I experience the NHS GIC service as largely a paternalistic gatekeeping exercise where psychiatrists exercise inappropriate levels of control over the lives and choices of patients. They ensure compliance by withholding or threatening to withhold access to treatment… Having to negotiate the GIC system seriously hindered my transition. At many times, it has left me feeling angry, disappointed, manipulated, controlled and despairing. The system is deeply flawed.’

Summary of Findings

 Protective Factors:

-          Timely access to hormones and surgery

-          Social recognition of their gender

-          Professional understanding and support

 Risk Factors:

-          Untreated Gender Dysphoria (delays, refusals)

-          Minority stress (discrimination, harassment)

-          Unnecessary and intrusive questioning/tests

-          Prejudicial attitudes from service providers

-          Restrictive treatment pathways

Key Recommendations

Exploration of Alternative Health Care Models

There should be a shift towards models of trans healthcare incorporating informed consent and patient flexibility. This could be within the context of Gender Identity Clinics, however there are substantial issues within this system as it currently stands in terms of patient experience and outcomes. Many other models of trans healthcare are used globally and should be explored as alternatives. For example, the THInC model from Chicago (Trans Hormones Informed Consent) has very positive outcomes with the communities being fully engaged and involved in decisions around their healthcare. Informed Consent models are easily adapted to the UK health system (for example the T-PIC model; Traverse Research). These alternatives should be developed and researched to provide a valuable resource for informing true evidence-based practice focussed on enhancing outcomes, and in the process reducing costs.

 

 



[1] The Trans Mental Health Study 2012 – Jay McNeil, Louis Bailey, Sonja Ellis, James Morton and Maeve Regan (Equality Network; September 2012).