Caring about P in the Court of Protection: the Re X scenario

by Jaime Lindsey, PhD Candidate and Teaching Associate at the University of Birmingham ( j.t.lindsey@bham.ac.uk)

In the recent Court of Appeal case, Re X [1], the judges’ obiter comments were certainly timely. The case concerned Deprivation of Liberty Safeguards (DOLS) cases under the Mental Capacity Act 2005 (MCA). The case itself turned on the question of whether P (the subject of the court proceedings) had to be a party to the proceedings in which they would potentially be deprived of their liberty. Whilst the Court of Appeal held that they did not have jurisdiction to hear the appeal, they made their feelings clear that P should always be a party to DOLS proceedings.[2]

Under the MCA, individuals can, in certain circumstances, be deprived of their liberty in a care home or hospital for the purpose of being given care or treatment.[3] Further, a person who may be deprived of their liberty outside of a hospital or care home, but still with sufficient degree of State involvement, would also require Court authorisation for the deprivation of liberty.[4] Many of us would expect that depriving a person of something so fundamental as their liberty should, at the very least, require them to have some input into the discussion. In fact, the ECtHR jurisprudence requires that a person who is to be deprived of their liberty should have access to a court and the opportunity to be heard.[5] This is not only important on an academic level; if a person who does not wish to be deprived of their liberty forcefully resists it, then the measures which need to be taken against them are surely an important factor for any court to consider before making an authorisation.

Yet this should not only be the case for removing somebody’s liberty. In my view, a more compassionate and inclusive approach should apply more broadly to the Court of Protection’s entire jurisdiction. In fact, new Court of Protection rules require the court to, at the very least, consider whether P should be required to participate in the proceedings and this is certainly a step in the right direction.

Involving P in the capacity question

As of 1st July 2015, the new Court of Protection (Amendment) Rules 2015 came into force. They require, amongst other things, that the Court considers whether it should make one of a number of directions relating to P’s participation in the proceedings (new Rule 3A Court of Protection Rules 2007). The possible directions it can make include: (1) joining P as a party (2) appointing a legal (or otherwise) representative for P (3) requiring P to address the judge (4) any alternative direction meeting the overriding objective. Whilst these rules certainly could have gone further, they show the Court’s increasing awareness of the greater need for P’s involvement.

Rule 3A is certainly an important step forward. It should ensure that judges and the parties are alive to the question of P’s involvement. Actually, involving P should be seen as a positive way to assist the Court in deciding whether he or she has capacity; a large part of the Court’s jurisdiction in health and welfare cases is about determining whether or not a person has the capacity to make a decision in the first place and this should not be forgotten. Clearly there will be cases where the capacity question is clear from the outset, for example consider the brain damaged adult on life support, but many more cases will be borderline and sometimes will involve adults who have no mental or learning disability at all.[6] Either way, to the extent that it is possible to do so and for capacity determinations at least, P should always be involved with proceedings.

A more inclusive approach?

The new rules should certainly go some way in achieving a more inclusive approach to decision making in the Court of Protection and are to be welcomed. However, the extent to which, and in what way, the options open to the Court will be used will need to be examined following implementation. A major factor in the increased involvement of P in proceedings will be the lawyers, social workers and carers who are involved in the case; if they see the benefit of involving P and argue in favour of this in court then is a judge really likely to refuse? Particularly in light of the obiter comments of the Court of Appeal in Re X, albeit that was in a slightly different context. In fact, the onus is not only on the judge in the case to consider this but it is also on the parties who can make an application to request such a direction. Those who know and work with P, and the lawyers on all sides, should be encouraged and feel empowered by recent developments to request P’s involvement.

The power of the Court of Protection in affecting the lives of individuals who fall under the MCA regime, both for the positive and negative, is enormous. In some ways, whether or not the outcome of the cases is any different as a result of the involvement of P is not the measure of success; what is vital is that people feel that their voice is heard, particularly in relation to decisions affecting their own lives. This empowers people to “buy in” to the ultimate decision that might be made on their behalf. That said, involving P in the decision making process will hopefully lead to better and more context sensitive decisions being made and the new rule 3A is a first step in achieving this.

[1] Re X [2015] EWCA Civ 599

[2]Ibid per Black LJ at para 108

[3] Pt1 s.1(2) MCA

[4]Under s.16(2)(a) MCA

[5]Winterwerp v The Netherlands [1979] 2 EHRR 387

[6] See for example IM v LM and AB [2014] EWCA Civ 37

Inheritance System and Care – Part 2

by Dr Antu Sorainen, Title of Docent, Academy of Finland Research Fellow, University of Helsinki, Gender Studies (antu.sorainen@helsinki.fi)

“It’s almost more important for a gay person to write a will than almost any other group in society. When writing a will, an LGBT person will have been able to give consideration to people and organisations that have had a positive effect on their life: they are not simply choosing their blood relatives to inherit with no regard to whether they deserve it”, responded the UK lawyer Siôn Hudson – who regularly drafts wills for people from all around Cambridge – to my first blog from 31 May.[1]

In this second blog I am discussing why it matters for queer people how governments seek to reform inheritance tax laws. In my view, sexuality is deeply implicated in the distribution of wealth through inheritance system. Inheritance taxation is under scrutiny in Europe: and an urgent matter when we think about inheritance from the point of view of queer relationships. The trend to abolish inheritance taxes has direct bearings on the organization of queer care, both structurally and at personal level, as the decline of public welfare puts more ideological, political and managerial stress on private care.

If queers do not write wills to support financially their friends, lovers and community (a fact derived from by my research data and practicing lawyers’ experiences), the queer community will depend more than before on the co-incidences of blood ties and will be exposed to familial and social homophobia.

***

My case study is the Nordic welfare countries where finance economics and political populism are currently feeding on social injustice in terms of inheritance taxation. Sweden abolished inheritance tax in 2005 in favour of capital gains tax, meaning that property is taxed not when inherited but only when realized.[2] Norway abolished inheritance tax in 2014, though it remains in Denmark and Finland. The latter country, however, seeks to follow the lead of Sweden and Norway; a new government has declared that intergenerational transmission in family firms will be advanced through reducing inheritance tax, and that capital gains tax and “other options” will be evaluated.

Finland risks a lot. Even in the equality “paradise” of Sweden, family background (status, education level, surname) correlates with the individual’s wealth path in society. This social factor arguably only heightened when capital gains tax was introduced. As one consequence of the cutting of inheritance tax, flats now circulate within families even for generations because the capital gains tax is rather high (30%) in Sweden. Rich families do not sell their flats but pass them on as tax-free legacies. This influences on the gentrification process in the biggest cities, and also the continuing difficulty of class travel in society.

As an example of how capital gains tax leads to socio-economic stagnation and creates a class glass ceiling for queers, we might take the example of Finnish immigrants to Sweden. Many Finns moved to Stockholm, Gothenburg or Norrköping suburbs in the 1960s to live on factory jobs. This mass migration was one consequence of the rapid urbanization of the Finnish society, which left small farmers without a future in their own country. These rural migrants were accompanied by a significant number of Finnish lesbians and gays who moved to Sweden in the 1970s as the sexual atmosphere was much more liberal there.[3] These immigration generational cohorts are now getting elderly, and if they had children these are now properly ‘swedizised’. Even if some of them are economically well-off, they are often without any hope of ever buying a flat in city centres since valuable flats are circulated through the inheritance system in a number of wealthy Swedish families.

Marriage would open a route to this circle of inherited flats – but marriage was not a legal option when Finnish queer immigrants were younger. These flats are not on the open market for other immigrants or Sweden’s own nouveau rich, either. It is clear that this does not help to overcome social inequalities or to maintain big Swedish cities as a buzz of trade and liberal life supported by mobility and difference.

***

Capital gains tax thus impacts on social minorities in negative ways. It will lead to increasing accumulation of wealth in the hands of a few. This “weather forecast” could be given to all societies with a big ratio of social inequalities, such as the UK.

John Stuart Mill advocated, for one, high inheritance taxes. For Keynes, inheritance was inherently unequal and not to be defended albeit he valued the right for economic gain – but the conservative agenda thrives and we lack critical voices based on proper socio-legal impact analysis. A shift in the direction of capital gains tax would result in an increase in socio-economic homogamy, the effects of which would impact the stability of minorities in society – those whose intimate relations, reproductive choices and support relations do not accord with the law’s categorizations. Queer sexualities have relevance for the inheritance institution’s categories in that the inheritance system distributes wealth mainly in small heterosexual family circles and potentially neglects “other” relationship categories than those based on blood and heterosexual marriage.

Adopting the capital gains tax may benefit some lucky queers born in wealthy and liberal families but keeping the inheritance tax and adjusting the system of inheritance taxation could benefit many if not all. What I would suggest is to have a better look at inheritance tax categories to make them sensitive to difference outside of conjugal norm and to better hinder tax avoidance of the rich through family firms.

[1] http://www.millersands.com/the-importance-of-having-a-will-the-lgbt-perspective/

[2] Magnus Henrekson and Daniel Waldenström. 2014. ”Inheritance Taxation in Sweden, 1885–2004: The Role of Ideology, Family Firms and Tax Avoidance.” http://www.ifn.se/wfiles/wp/wp1032.pdf

[3]Sorainen, Antu. 2014. “Two Cities of Helsinki: One Practically Queer and One Liberally Gay.” In Matt Cook and Jennifer Evans (eds.) Queer Cities, Queer Cultures: Europe Post 1945. London: Bloomsbury, 211-239.

Inheritance System and Care: Queer will-writing

by Dr Antu Sorainen, Title of Docent, Academy of Finland Research Fellow, University of Helsinki, Gender Studies (antu.sorainen@helsinki.fi)

Laurie Anderson, in a recent interview with the Guardian, was asked: “What song would you like played at your funeral?”
Answer:
“Not my problem.” [1] [2]

Even though it is a witty remark, I beg to disagree. Arranging one’s after-life could be of a great benefit for those one cares about. Kinship, care and inheritance belong to the same package. The wealthy always knew this and took care of their economic interests through marriage and bloodline based inheritance arrangements. Not many of those at the margins of the society think that they need to write wills, seek to arrange their financial aftermaths, or indeed, funeral rituals to make sure that their kinship tradition lives. However, those few queer funerals that I have attended, carefully following the wishes of the deceased person, have been really important for the queer community, including at a symbolic and performative level, building and passing on the tradition, history, encouragement and memories of many important aspects of the past and present queer struggles.

In my view, we should actively advocate will-writing among those social groups who traditionally have not “owned” this tradition as theirs, especially under the current neoliberal and conservative political and economic currencies targeting the inheritance system that I will discuss in my next blog post. Activists in the legal field should encourage people to take care of their inheritance arrangements as far as they can, as an important and oft-neglected form of care; in particular, queer care. By this, I mean that inheritance could be conceptualised and re-imagined as not only transformation of property but also as taking care of those who actually matter in one’s life: directed towards friends, lovers, and community. Will-writing offers a pathway to new identifications: we could re-imagine new concepts for care practices that the society tries to hide from the people who do not follow its dominant norms.

Daniel Monk (2013) [3] argues that will-writing potentially offers a site for queer acts. He suggested that they as well as being the scene for an ultimate declaration of one’s final will, provide possibilities for not only to pass on property but also for passing of other kinds of “goods” such as coming-outs, supporting the queer community and/or the chosen family, friends or lovers, disinheriting the possibly homophobic blood relatives, or publicly recognising the “real” care and support relations in one’s life.

Will-writing is a reflection of an ideal of autonomity of the modern individual. If sexually or otherwise marginalised people would look at will-writing as their right to define the posthumous destiny of not only their wealth but also of the well-being of people who they really care for, also outside of the blood relatives circle, they might more often come to think to write wills for supporting their lovers, friends, community, and other real life-carers. In this way, as a mechanism for transmitting property from one person to another, and from one generation to another over time, lesbian and gay wills could have a considerable social and economic significance.

There is a particular purchase to bringing in legal thinking in the study on inheritance and socially marginalised groups since as a discipline and practice it has to deal with different kinds of relationships. The law is the classic locus for situations where categorical and interpersonal relations confront each other: the law deals with persons in relation to categories [4] . When it comes to inheritance, often even a small inheritance has made it possible for many ordinary as well as many famous people to create uncommon, radical, world-changing lives outside the pressure of the normative legal and social understanding of parenting and relationships (Sorainen 2015). [5]

Coming up  in my second blog post:
“I worry about putting my friends in a difficult economic position if I’ll add them into my will”, one of my lesbian interviewees told me. This is a legitimate concern because, in her country, Finland, her queer care and support network members would be subjected for a much higher inheritance tax than her emotionally distant siblings would be.

My next blog-post will consider how, in this way, legal categorizations privileging bloodline and/or marriage often fail to recognize the actualities of non-normative personal lives and the ”chosen heirs”. This is especially prudent as on 27 May 2015, Finland decided to seek to change its inheritance laws. At the moment, if a close blood relative or a friend inherits property in Finland, the inheritance tax is from 8- 36%. But in case of inter-generational family business inheritance, the tax is, on average, only 2,8% of the market value of the company. I discuss the effect of this on the queer community and on the dissemination of wealth throughout society.

References:

[1] http://www.theguardian.com/lifeandstyle/2015/may/16/laurie-anderson-interview

[2] When I told the anecdote at the opening of this blog to one of my gay male interviewees, he said: “In my funeral, they should play Laurie Anderson’s song Same Time Tomorrow.” The song goes like this: “And so when they say things like “We’re gonna do this by the book”, you have to ask “What book?”, because it would make a big difference if it was Dostoyevsky or just, you know, Ivanhoe.” – https://www.youtube.com/watch?v=ePMwwa436ug

[3] Monk, Daniel. 2013. “EM Forster’s will: an overlooked posthumous publication.” Legal Studies, Volume 33, Issue 4 December 2013, 572–597.

[4] Strathern, Marilyn (2005). Kinship, law and the unexpected: Relatives are always a surprise. Cambridge: Cambridge University Press

[5] Sorainen, Antu. 2015. “Queer Personal Lives, Inheritance Perspectives, and Small Places.” Nordic Journal for Queer Studies – Lambda Nordica, a special volume on Kinship and Reproduction, 3-4/2015 vol. 19.

Rethinking the Care Needs of Older Homeless People

by Rachel Barken and Amanda Grenier

The care needs of older adults experiencing physical and cognitive decline generate much attention in political, popular, and academic debates. Yet, particular subgroups of the older population are often overlooked. Such is the case for older homeless people, whose numbers are increasing across Canada and internationally. Older homelessness is also largely invisible in academic study, although interest is beginning to turn in this direction. Few gerontological works focus on homelessness, and studies on homelessness are often organized around earlier parts of the life course (Crane & Warnes, 2005; McDonald, Dergal, & Cleghorn, 2007). As a result, we know little about older homeless adults’ needs for care.

Our research project, “Homelessness in Late life: Growing Old on the Streets, in Shelters, and Long-term Care” explores the challenges older homelessness brings for aging societies as a whole and for service providers working in housing, shelter and long-term care. It involves a critical policy analysis; qualitative interviews with service providers and older homeless people; and participant observation in homeless shelters in Montreal, Quebec. This blog reports preliminary results from interviews with 15 service providers working with older homeless people. Interviews revealed three findings relevant to the challenges and contradictions of later life homelessness: (1) the need to adapt current approaches to homelessness to better accommodate older people, (2) the need to develop and sustain affordable housing across the life course, and (3) the inherent emotional conflicts and contradictions associated with homelessness in late life.

First, homelessness tends to be approached as a rupture in the life course requiring an emergency response. Support services are often provided in reaction to a fixed event, with the aim of reconnecting people with work or housing.  Interviews with service providers, though, reveal that older homelessness is often the result of marginal and precarious positions over time. The combined implications of social marginalization and older age means that traditional solutions based on work and housing are less able to ‘fix’ the problem of older homelessness. A deeper understanding of the interconnected individual and structural forces leading to later life homelessness is necessary.

Second, older people are caught between various housing and long-term care models. Housing options for older homeless adults in Canada include affordable housing units, alternative housing models, emergency shelters, and residential and long-term care facilities. Yet there is often a disjuncture between housing policies and practices on the one hand, and older homeless adults’ experiences, needs, and abilities on the other. Older people may need to compete against younger groups for subsidised housing. Pensions provide a certain level of income, but this does not address the shortage in supported housing options. Add to this that shelters or rooming houses are not intended as spaces to grow old. They are not adapted to changes in mobility and certainly do not qualify as ‘home’. Long-term care is also often inaccessible to older homeless people. They either cannot afford long-term care, or their needs cannot easily be accommodated in institutional environments.

Our third finding is perhaps most interesting to the debates circulating on this blog. Although workers do not necessarily name it as such, their interviews convey emotional, moral, and ethical conflicts around service priorities, personal associations, and expectations of aging. Their comments that one is ‘not expected to be homeless in later life’ poignantly articulate the conflicts that they experience with regards to aging and marginalisation and a profound helplessness given the lack of service options available for older homeless people.

In sum, homelessness rarely figures in to discussions of later life care. This leaves us with few directives when attempting to care for older homelessness people. We suggest that a life course perspective could be fruitfully applied to understand major pathways into homelessness, particularly risk factors and trigger events, and their prevalence across the life course. With this in place, it is necessary to design housing and care options that suit older homeless people’s diverse needs, abilities, and interests. Finally, it is urgent for discussions of later life care to address the realities of homelessness in particular, and social marginalization more generally. Our project, grounded in empirical data, seeks to generate knowledge that will enable policymakers and practitioners to account for homelessness in their responses to later life care.

References:

Crane, M., & Warnes, A. (2005). Responding to the needs of older homeless people.         Innovation: The European Journal of Social Science Research, 18(2), 137-152.

McDonald, L., Dergal, J., & Cleghorn, L. (2007). Living on the margins: Older homeless    adults in Toronto. Journal of Gerontological Social Work, 49(1-2), 19-46.

* The results discussed in this blog are part of an ongoing study being carried out at the Old Brewery Mission in Montreal, and funded by the Social Sciences and Humanities Research Council of Canada: Homelessness in Late Life: Growing Old on the Streets, in Shelters and Long-term Care: Amanda Grenier (PI), Tamara Sussman, David Rothwell and Jean-Pierre Lavoie.

Amanda Grenier, PhD, is Director of the Gilbrea Centre for the Studies of Aging, Gilbrea Chair in Aging and Mental Health, and Associate Professor in Health, Aging and Society at McMaster University, Canada.

Rachel Barken is a doctoral candidate in the Department of Sociology at McMaster University and Research Assistant on the Homelessness in Late Life research project.

Rethinking Age in the Context of Care

Age- and stage-based assumptions are deeply embedded in care models and across care practices (Grenier, 2012). Whether care is used to refer broadly to a concept, institutional and organisational practices, or to denote relationships between families and older people, age and care are intricately intertwined. This entry focuses on care provision as a site from which to consider the intersections of age and care, and whether current models are in line with older people’s needs, and the new realities of ageing. Care is often linked with discourses of dependence, and paradoxically associated with potential in youth, and decline in age (see Irwin, 1995; Gullette, 2004). In late life, care tends to be delivered based on age eligibility. Yet, with age and what it ‘means to grow old’ an increasingly contested terrain, it is time to reconsider how age is enacted or sustained through care practices, and consider whether age-based models of care are suitable in the contemporary context.

 

A number of complexities exist when we begin to unpick age and the organisation of care. Formal care provision tends to be delivered through age-based segments of youth and old age. Few formal care services are life-long. Yet, the separation of the life course into age- and stage-based periods, age as an organising principle, and former notions of ageing as decline have been called into question (Featherstone and Hepworth, 1991; Hockey and James, 2003). At the level of personal experience, older people voice that ‘they are not old’ – that the age they are assigned contrasts with their experience and sense of self (see Kaufman, 1986; Bytheway, 2011). This has created a disjuncture where suggested models and expectations are concerned, as well as an alignment with new forms of ageing that emphasise success, health and well-being (see Katz, 2005). And while universal understandings of age are quickly being unravelled, undeniable needs for care amongst older people continue to exist. Older people may need care at various points across their life course as a result of disability or chronic illness, ‘frailty’ or end of life issues, and/or at particular marginalised locations (e.g., poverty, older homelessness). Yet, are such needs for care age-based?

 

We are at a crossroads where the age-based provision of care is concerned. Although reconfigurations of policy based on chronological age are underway (e.g., public pension), current examples focus on age adjustments, rather than on differing needs or alternate arrangements. Perhaps the retention of age is prudent considering the realities of ageism, reconfiguring age to reduce social expenditure, and the structured inequities in late life (see Gee and Gutman, 2000). However, the contemporary context calls for reflection at minimum. How do we catch up with emerging realities of aging and adjust the organisation of care accordingly? Should age be used to organise care services? If so, in what circumstances? If not, how can we assure that those in need are not further marginalised? Such questions represent a starting point from which to reconsider age-based models of care, question underlying assumptions, and reconfigure care practices so that they are more aligned with changing notions of age and contemporary care needs.

 

Amanda Grenier, PhD, Associate Professor, McMaster University

email: amanda.grenier@mcmaster.ca

twitter: @amanda__grenier

 

References:

Bytheway, B. (2011). Unmasking age: the significance of age for social research. Bristol: The Policy Press.

Featherstone, M., and Hepworth, M. (1991). ‘The mask of ageing and the postmodern lifecourse’ In M. Featherstone, M. Hepworth and A. Wernick (eds) Images of ageing, London: Routledge.

Gee, E. M., and Gutman, G. M. (2000). The overselling of population aging: apocalyptic demography, intergenerational challenges, and social policy, New York: Oxford University Press.

Grenier, A. (2012). Transitions and the lifecourse: challenging the constructions of ‘growing old‘. Bristol: Policy Press.

Gullette, M. M. (2004). Aged by culture, Chicago: University of Chicago Press.

Hockey, J., and James, A. (2003). Social identities across the lifecourse, Houndmills: Palgrave MacMillan.

Irwin, S. (1995). Rights of passage: social change and the transition from youth to adulthood,  London and Bristol: UCL Press.

Katz, S. (2005). Cultural aging: life course, lifestyle, and senior worlds, Peterborough, ON: Broadview Press.

Kaufman, S. (1986). The ageless self: sources of meaning in late life, Madison: University of Wisconsin Press.

 

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

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.