No Room at the Inn? Older LGBT individuals’ unmet housing needs

Stonewall Housing, in conjunction with Age UK, Opening Doors London and Rainbow Hamlets, is holding a major Older LGBT Housing conference on 18th June 2014. Entitled ‘Bona Latties’ (Polari for Good Housing) it aims to give voice to older LGBT individuals’ housing wants and needs and create a space to discuss them with providers. Older LGBT unmet housing needs are a problem in the following ways:

  • Mainstream housing provision for older people is perceived as heteronormative, homophobic, biphobic and transphobic(1)(2)(3);
  • There is a lack of specialist housing, i.e. housing run for older LGBT individuals, by LGBT individuals (4)(5)(6);
  • There is a lack of specific housing choices for older LGBT, e.g. those who want gender specific housing (e.g. men/women only), which many older individuals, especially older lesbians, want (7). It’s an outdated ‘one size fits all’ (8) approach;
  • There is a lack of specialist domiciliary care for older LGBT people, with the exception of Pride in Care UK. Many older lesbians and gay men in particular re-closet themselves in their own homes, for fear of prejudice from carers (9);
  • There is a lack of services to support older LGBT in setting up housing cooperatives where they provide one another with reciprocal support and/or buy in care which is respectful of, and meets, their needs.

As a result of these unmet needs, older LGBT individuals are left with a stark choice: ‘the prospect either of living alone without support or having to enter [sheltered housing and] care homes which will not meet their needs.’ (10) We say ‘it gets better’ to younger LGBT people. And for many that may be true. But the sad the truth is that in older age it gets worse. As much as we should address the needs of LGBT youth, we also need to address the needs of older LGBT individuals as well. Schools are a problem for LGBT youth. Sheltered housing and care homes are a problem for LGBT older people. We must tackle both.

References

(1) Ward, R., Pugh, S. and Price, E. (2010) Don’t look back? Improving health and social care service delivery for older LGB users. London: EHRC;
(2) Fredriksen-Goldsen, K. I., 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;
(3) 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, pp 42-55, Edinburgh: Dunedin Academic Press.
(4) Musingarimi, Primrose (2008). Housing Issues Affecting Older Gay, Lesbian and Bisexual People in the UK: A policy brief. London: The International Longevity Centre – UK (ILCUK)
(5) Carr, S. and Ross, P. (2013) Assessing current and future housing and support options for older LGB people. York: Joseph Rowntree Foundation.
(6) LGBT Movement Advancement Project (MAP) and Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders (SAGE) (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) Westwood, S. (submitted): ‘“We see it as being Heterosexualised, being put into a Care Home”: Residential care concerns and preferences of ageing sexual minorities.’ Ageing and Society.
(8) Eaglesham, Phil (2010) ‘The Policy Maze and LGBT Issues: Does One Size Fit All?’, in R. Jones & R. Ward (eds) LGBT Issues: Looking Beyond Categories, pp 1-15. Edinburgh: Dunedin.
(9) Knocker, S. (2012) Perspectives on ageing lesbians, gay men and bisexuals. London: Joseph Rowntree Foundation.
(10) Guasp, A. (2011) Lesbian, gay and bisexual people in later life. London: Stonewall.

 

‘Counting the Costs? Resources, Austerity and Older LGBT People’

The ‘Minding the Knowledge Gap’ ESRC funded seminar series held its fourth seminar at the University of Surrey last week. This seminar, called ‘Counting the Costs? Resources, Austerity and Older LGBT People’ addressed the material, financial and social resource implications of lesbian, gay, bisexual and trans (LGBT) ageing, particularly in times of austerity. It was well-attended by participants from a range of backgrounds: LGBT individuals (in all their diversity, including some in older age); advocates and activists; academics; social policy makers; and the police. There were two speakers. Dr Noah Uhrig, from the Institute for Social & Economic Research, University of Essex, gave a fascinating talk on ‘Poverty and Material Well-being of LGBT elders’, somehow managing to make some very complicated statistic not only accessible but also enjoyable. Audience members gazed in avid fascinating and still wanted more at the end. The second speaker, Dr Martin Mitchell, NatCen Social Research presented on ‘Not just “a nice thing to do”: Marginalisation and hardship for LGBT older people in the context of austerity cuts.’

Noah spoke of recent research project on poverty and sexual orientation (constrained by the usual problems with representative sampling of a ‘hidden population’) which suggested significant material differences in later life for LGB individuals compared with heterosexual individuals, and between one another. A key feature was the suggestion that older lesbians were materially advantaged compared with both older heterosexual individuals and older gay men. Noah’s data – which he bravely presented, anticipating the response it would meet – were, not surprisingly, hotly contested by many of the lesbian members of the audience. They found the idea of older lesbian material advantage counter-intuitive. Discussions raised issues of: women’s relative lower earnings to men; women’s greater representation in (lower paid) public services work, especially care work; women (including lesbians!) taking time out of work to have children, and to perform other informal unpaid care work (including for parents and grandchildren); women being much more likely to be in part-time paid work (rather than full-time work) while also performing unpaid informal care work (1). Noah acknowledged the tensions provoked by the data, and plans on conducting further analyses. We look forward to hearing more!

Martin then spoke of the double-edged sword of austerity cuts. Older LGBT individuals are more likely to need support from those public and voluntary sector services (health and social care, informal and formal social support) which are currently subjected to drastic cuts in funding (2). Those cuts in services impose increased pressures on an already pressured cluster of minoritised individuals, meaning they have a greater need for services, at the very time when there are fewer services available. Lack of material and social resources have profound implications for the well-being of older LGBT individuals (3) (4).

Afternoon discussions returned to the issue of gender (again unsurprisingly) and to the need to continuously unpack the ‘LGBT’ acronym (5), to appreciate how older lesbians, gay men, bisexual women and men, and trans individuals are particularly affected by the material and social resource implications of later life. The plight of the Opening Doors London project, supporting 1,000 older LGBT individuals in the London area, and which has lost all of its funding, highlighted the lived realities of the implications of austerity cuts. Towards the end of the day two distinct responses to resourcing projects for older LGBT in later life: the neoliberal model of private and national state engagement; a more localist, communitarian approach involving local LGBT groups and local government. It was mentioned that in Australia and some parts of the USA, older LGBT have been designated a ‘special needs group’ (with all the complications of such a categorization) and as such are eligible for state funding for local projects.

Much food for thought, and much work to be done, but all-in-all, it was a stimulating and thought-provoking day, made so by the contributions of all who attended.

(1)    Arber, Sara (2006) ‘Gender and Later Life: Change, Choice and Constraints’. In J. Vincent, C. Phillipson and M. Downs (eds) The Futures of Old Age, pp. 54-61,London: Sage.

(2)     King, Andrew (2013) ‘Prepare for Impact? Reflecting on Knowledge Exchange Work to Improve Services for Older LGBT People in Times of Austerity.’ Social Policy and Society / FirstView Article / November 2013, pp 1 – 13 DOI: 10.1017/S1474746413000523, Published online: 19 November 2013

(3)    Fredriksen-Goldsen, et al (2013a) ‘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

(4)    Fredriksen-Goldsen, Karen I., et al. (2013b). ‘The physical and mental health of lesbian, gay male, and bisexual (LGB) older adults: the role of key health indicators and risk and protective factors.’  The Gerontologist, 53(4):664-675.

(5)    Ward, Richard, Rivers, Ian. and Sutherland, Mike (eds) (2012). Lesbian, Gay, Bisexual and Transgender Ageing: Biographical Approaches for Inclusive Care and Support.  London: Jessica Kingsley

 

 

 

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:

Sexual identity and care home provision: some reflections on the research process

My colleagues and I at Swansea University have recently completed a mixed-methods study into the provision of inclusive care to older lesbian, gay and bisexual (LGB) people in residential and nursing care environments in Wales – an elongated title for saying, ‘how well are older LGB recognised and cared for in care homes?’ We know from the literature that heterosexism in residential care provision can mask the sexual health needs, diversity and desires of older LGB residents. Prior research from Australia and the United States has identified institutional and historical barriers that prevent older people ‘coming out’, or identifying as LGB to care providers (Barrett, 2008; Jackson, Johnson & Roberts, 2008; Knockel, Quam & Croghan, 2010; Tolley & Ranzijn, 2006). Our research was funded by the National Institute for Social Care and Health Research (NISCHR) and had a unique focus on Wales as a UK nation with devolved responsibility for providing health and social care to its citizens, including older people. Residential and nursing homes (private and local authority-owned) from across Wales took part. Two methods were used to gather staff perspectives on inclusive care —self-completed questionnaires (121 respondents), and focus groups with care staff and managers (5 groups) from 32 organisations. Other methods included: content analysis of Care and Social Services Inspectorate Wales (CSSIW) Inspection reports (383 reports) to identify content pertaining to sexuality, sexual health and LGB identities; and, semi-structured interviews with 29 older LGB-identifying adults about their hopes and expectations for future care. The final report is available online and provides an overview of the key findings and recommendations: http://www.swan.ac.uk/humanandhealthsciences/research/research-impact/lgb-residential-care-report/

What follows are some brief reflections on the process of involving care organisations in the research – reflective comments on the research process that do not always make the final edit of reports and papers but may help steer future research in this domain.

Willingness to participate and learn – We initially anticipated that seeking care home participation would be the biggest challenge in recruitment because of the politically-charged nature of the topic and our concern that staff and managers would interpret our research endeavours as a critical appraisal of their practice.  Instead, we were struck by the enthusiasm of staff and managers to participate. Using a random sampling method, we invited 51 organisations to participate with 19 declining. Most of these homes declined because of impeding closures that created logistical barriers to their involvement. For some staff groups, participation in a focus group was framed as an informal learning opportunity into an area that receives little time and attention, an unexpected but positive outcome. Across focus groups, there was general agreement of a ‘need to know more’ about sexual difference and LGB histories. Participating staff members conveyed an awareness of progressive shifts in legislation and social attitudes but in equal measures expressed a willingness to be more mindful of the sexual biographies of residents in their care.

Sexuality, dementia and everyday care – While our research focused on sexual identity and social inclusion, a connected and equally pertinent topic that frequently emerged in focus groups was the complexity of balancing issues of sexual expression, dementia and informed consent. Staff elaborated on the challenges of negotiating sexual relationships and intimate contact between residents with declining mental capacity alongside responding to the often divided opinions of family members. Listening to these accounts of complex care deepened our appreciation for staff members’ commitment to respecting the rights and choices of residents in their care and to continually ‘do the right thing’. It also brought home the ethical complexity of providing care in these settings for employees who were in receipt of a low financial reward just above the minimal wage with little professional recognition.

Missing voices from the research – Staff views and accounts conveyed through the research represent predominantly White perspectives. The majority of participating staff and mangers were white, heterosexual women born in Wales and of mainly Christian background. This clearly did not match our observations of staffing groups when entering homes – we noticed many participating homes employed staff from black and ethnically diverse groups, including individuals from African and Asian migrant communities. We were limited to the staff available to speak to us between rotating shifts and group membership was often facilitated by senior staff members operating as ‘gatekeepers’ for their organisations. It is difficult to pinpoint whether individual staff from migrant and ethnically diverse communities opted not to participate for personal or religious reasons or whether they were not approached to participate; we can only speculate about possible barriers to participation. Ethical requirements prevented us from actively approaching individual staff to participate. Finally, we did not anticipate the eagerness of ancillary staff members (such as cleaners, kitchen staff etc.) to have a say in the research. It became increasingly clear that their various duties involved regular contact with residents and their views were of equal importance in the provision of inclusive care. We confess to underestimating the validity and contribution of these staff members’ perspectives; food for thought for future research.

I hope the above reflections are of some benefit to other researchers and practitioners engaged in research in an area of increasing interest. Putting these observations to paper has been valuable for me in capturing the often sidelined messages about research into organisations providing care to others.

Barrett, C. (2008). My People: A project exploring the experiences of gay, lesbian, bisexual, transgender and intersex seniors in aged-care services Retrieved 16th October 2009, from http://www.matrixguildvic.org.au/MyPeopleReport2008.pdf

Jackson, N.C., Johnson, M.J. & Roberts, R. (2008). The potential impact of discrimination: fears of older gays, lesbians, bisexuals and transgender individuals living in small- to moderate-sized cities on long-term health care. Journal of Homosexuality, 54(3), 325-339.

Knockel, K.A., Quam, J.K. & Corghan, C.F. (2011). Are Old Lesbian and Gay People Well Served? Understanding the Perceptions, Preparation, and Experiences of Aging Services Providers. Journal of Applied Gerontology, 30(3), 370-389.

Tolley, C. & Ranzijn, R. (2006). Predictors of heteronormativity in residential aged care facilities. Australasian Journal on Ageing, 25(4), 209-214.

About the author: Paul Willis is Senior Lecturer in social work in the College of Human and Health Sciences at Swansea University. His research interests include ageing, sexuality and social care; wellbeing and identity construction of LGBT youth; and social inclusion in organisations. Email: P.B.Willis@swansea.ac.uk

Care needs, gay men aged 60 and over

One of my research projects is to examine how a group of 25 gay men aged 60 and over have experienced or expect to experience old age. Interviewed as part of research I did for a book that Palgrave Macmillan published in 2013 (Gay Men’s Relationships Across the Life Course) the men were recruited in Auckland, London, Manchester, Melbourne, and New York. Six of them were in their 80s, nine were in their 70s and ten were in their 60s. This project builds on work that Brian Heaphy (2009), Ann Cronin and Andrew King (2012) among others, have already done in the area of queer ageing needs. It will also expand on my own findings from an all-Australian sample of gay men (n=80) that I used in The Changing World of Gay Men (Palgrave Macmillan, 2008) where I argued that I found little or no evidence to suggest that Australian gay men aged 60 and over were lonely in old age and that most seemed relatively optimistic about the prospect of growing old. What I did not examine, however, in The Changing World was the extent of their fears or concerns about life in care, which is the focus of the research I write about today.

Preliminary analysis of data from my international sample of 25 men suggests that they chiefly used two narratives when explaining what worried them about their care needs in old age. The first narrative related to that set of general fears and concerns that occupy the waking hours of many members of the general population as they age, namely fears about losing mobility or independence, having to live alone after the death of a partner, loss of sexual potency or interest, having to move into a nursing home, or the risk of dementia.

The second narrative the men drew on when explaining what worried them about old age were fears about heterosexism or homophobia. At the top of their list of worries was the heteronormativity they expected would exist in nursing homes or the homophobia of staff or other residents, either of which could have the effect of forcing some of the men back into the closet. One of the interviewees, a Sydney man aged 72 said the following about aged-care accommodation: ‘Nursing homes in Australia are often run by church organisations. Some church organisations, though not all, are not particularly welcoming to gay residents. They are not particularly understanding of the diversity of human relationships and of their needs’. A similar, related fear that men already living independently at home expressed was having to deal with care workers who were homophobic or uncooperative.

Cronin, Ann and Andrew King (2012) ‘Only Connect? Older lesbian, gay and Bisexual (LGB) social capital’ in Ageing and Society Available on CJO 2012  doi:10.1017/S0144686X12000955

Heaphy, Brian (2009) ‘The Storied, Complex Lives of Older GLBT Adults: Choice and its Limits in Older Lesbian and Gay Narratives of Relational Life’ in Journal of GLBT Family Studies, 5, 119–138.

Intergenerational programmes and LGBT people

How can LGBT people of different age groups support each other? This is a key question that the ESRC seminar ‘Intergenerational issues and LGBT people’ held at Oxford on 9th September 2013 aimed to address. The seminar brought together around 40 people – including academics, policy-makers, service providers, third-sector organisations, and advocacy groups – among them younger and older LGBT people.

Older and younger LGBT people have grown up under vastly different socio-historical circumstances. The priorities of needs and concerns of different age groups would be different. Even within the ‘community’ itself, especially among gay men, the focus on youth means that ageism against older people can be rampant. At the same time, reverse ageism against younger people, characterizing younger people as shallow and worry-free, is not uncommon. All these can lead to an impression that younger and older people are marked by ‘differences’ and different generations of LGBT people are torn apart from each other.

However, it needs to be recognized there are similar difficulties both groups face. Despite the speed and extent to which society has progressed on LGBT issues, both older and younger LGBT people still face minority stress on a daily basis, which is related to a range of mental health issues, such as social isolation, discrimination and depression. Service providers, be they educational and employment providers in the case of younger LGBT people, or care homes or day care centres in the case of older LGBT people, still work on heteronormative assumptions. Staff in such settings generally remain ignorant and unaware of, if not hostile towards, LGBT issues.

The International Longevity Centre (ILC) thus argued the case for intergenerational projects as a way to bring older and younger LGBT people together. It was argued that the range of benefits can include:

•    Unifying a diverse community;
•    Reducing age stereotypes;
•    Development of social skills and confidence;
•    Development of practical skills;
•    Exposure of young LGBT people to older LGBT role models;
•    Improved understanding of the needs of older and younger LGBT people;
•    Preservation and increased awareness of LGBT history;
•    Sharing lifecourse experiences and providing social support. (ILC 2011: 5)

It has been repeatedly pointed out in previous posts (http://revaluingcare.net/older-peoples-day-including-older-lgbt-people/, http://revaluingcare.net/a-darker-side-to-care/ ), that older LGBT people can be particularly in need of formal care because they are less likely to have children and more likely to live alone than their heterosexual counterparts. On a point related to this, The ILC argued that intergenerational projects can provide older LGBT people with the opportunities ‘to develop informal relations with younger LGBT people that could ultimately lessen the need for heavy reliance on social care providers, or may help in negotiating relationships with these’ (ILC 2011: 10).

Of course this is not to say it is easy to bring different generations of LGBT people together. But if intergenerational projects could help to bring about a more caring LGBT community that is defined more by empathy and mutual understanding across age groups, how it can be done would deserve more discussions.

Reference:
International Longevity Centre (2011) Celebrating Intergenerational Diversity An evaluation of three projects working with younger and older Lesbian, Gay, Bisexual and Transgender people. http://www.ilcuk.org.uk/files/Report_1.pdf

Yiu Tung Suen is an Assistant Professor at the Department of Sociology of the Chinese University of Hong Kong (E-mail address: suenyiutung@cuhk.edu.hk).

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…?

Key authorship on older LGB carers

Brotman, Shari, et al (2007) ‘Coming out to care: Caregivers of gay and lesbian seniors in Canada’, The Gerontologist, 47(4), pp. 490–503.

Conaghan Joanne and Grabham, Emily (2007) ‘Sexuality and the Citizen Carer’ Northern Ireland Legal Quarterly, 58: 325-341

Concannon, Liam (2009) ‘Developing Inclusive Health and Social Care Policies for Older LGB Citizens’, British Journal of Social Work, 39: 403-417.

Corden, Anne and Hirst , Michael (2011) ‘Partner care at the end-of-life : identity, language and characteristics’, Ageing & Society, 31:  217–242.

Cronin, Ann, et al (2011) ‘Categories and their consequences: Understanding and supporting the caring relationships of older lesbian, gay and bisexual people’, International Social Work 54(3): 421-435

Fenge, Lee-Ann, and Hicks, Christina (2011). “Hidden lives: the importance of recognising the needs and experiences of older lesbians and gay men within healthcare practice.” Diversity in Health and Care 8(3): 147-154.

Hughes, Mark, and Kentlyn, Sue (2011. “Older LGBT people’s care networks and communities of practice: A brief note.” International Social Work 54(3): 436-444.

Manthorpe, Jill and Price, Liz (2005) ‘Lesbian Carers: Personal Issues and Policy Responses’, Social Policy & Society 5(1): 15–26

Munro and Karen-Leigh Edward (2010) ‘The Burden of Care of Gay Male Carers Caring for Men Living With HIV/AIDS’, American Journal of Men’s Health, 4(4) 287-296

Munro and Karen-Leigh Edward (2010) ‘The Burden of Care of Gay Male Carers Caring for Men Living With HIV/AIDS’, American Journal of Men’s Health, 4(4) 287-296

Newman, Roger (2005). “Partners in care – Being equally different: lesbian and gay carers.” Psychiatric Bulletin 29(7): 266-267.

Price, Elizabeth (2008) ‘Pride or Prejudice? Gay men, lesbians and dementia’, British Journal of Social Work, 38: 1337-1352.

Price, Elizabeth. “Caring for mum and dad: lesbian women negotiating family and navigating care.” British Journal of Social Work 41.7 (2011): 1288-1303.

Roseneil, Sasha (2004) ‘Why we should Care about Friends: An Argument for Queering the Care Imaginary in Social Policy’, Social Policy & Society 3(4): 409–419

Rosenfeld, Dana, Bartlam, Bernadette and Smith, Ruth (2012) ‘Out of the Closet and Into the Trenches: Gay Male Baby Boomers, Aging, and HIV/AIDS’, The Gerontologist  Special Issue: Baby Boomers, Advance access 31st January 2012, doi:10.1093/geront/gnr138, 0(0):1–9.

Ward, Richard, et al (2005) A kiss is still a kiss? The construction of sexuality in dementia care. Dementia: the International Journal of Social Research and Practice, 4 (1): 49–72.

Willis, Paul, Ward, Nickie and Fish, Julie (2011) ‘Searching for LGBT Carers: Mapping a Research Agenda in Social Work and Social Care’, British Journal of Social Work, 41: 1304–1320