Considering Age Relations in Research on Care

Rachel Barken

Concerns abound regarding the social, political, economic, and individual changes necessary to care for a growing population of older adults experiencing physical and cognitive decline.  These concerns are evident in academic scholarship, with a large body of research advancing theory and practice on caregiving and receiving in later life. Despite this focus on older adults, however, the ways age relations frame experiences of care are not clearly articulated. The concept of age relations, which owes much to the work of Toni Calasanti (e.g. Calasanti, 2003, 2006), considers the structured social relations that frame interactions among members of different age groups. Age is relational because one’s membership in an age group is defined in relation to other age groups, and because membership in these groups forms the basis for access to, or exclusion from, various rights and privileges. Inequalities among age groups intersect with other power relations associated with gender, class, and race/ethnicity. In this blog post I outline three ways theorizing age relations might move forward perspectives on later life care.

First, theorizing age relations helps to understand how care for older adults is conceptualized differently than care for people in other age groups. Feminists have long recognized that patriarchal conditions diminish the value of caring for ‘dependents,’ including children, disabled people, and older adults. But the devaluation of care work depends on the social status of those who are being cared for (Calasanti, 2006). The theory of age relations, with its emphasis on relational inequalities between and among members of different age groups, helps to explain why some forms of care are more highly valued than others. Because youth is regarded as a transitional status with such positive attributes as “ ‘hope’ or ‘future,’ ” (Calasanti, 2003, 208), childcare is often considered a generative task. By contrast care needs in later life are typically associated with physical decline, impairment, and weakness. These conditions present a permanent change in status and exclusion from previous activities rather than a temporary sick role from which one will emerge. Thus, older adults needing care are often viewed as a burden. The prevalence of debates regarding ways to minimize the economic and social costs of eldercare and the low status and of paid and unpaid caregiving for older adults are indicative of the inequalities among age groups that tend to disadvantage older adults and those caring for them.

Second, theorizing age relations brings into view the structured contexts that shape experiences of care. Social relations are structural in the sense that they frame people’s life course experiences and relationships with others. Theorizing age relations reminds us that the problems associated with later life cannot be solely attributed to physiological aging processes or to individual decisions made throughout the life course; rather, they emerge in socio-structural contexts.  For example common understandings and responses to age are embedded in policies guiding the distribution of pension incomes and spending on health and social care. These policies have a very real impact on older adults’ experiences of giving and receiving care.

Third, theorizing age relations gives insight on the intersecting relations of advantage and disadvantage—including class, age, gender, and race/ethnicity— that frame caregiving and receiving. These relations do not completely determine people’s life chances, but they do frame the contexts in which individuals act and interact (McMullin, 2000). An important difference between age relations and other forms of inequality is that aging is a universal experience. All people who live long enough to grow old will experience the marginalization associated with later life in an ageist society (Calasanti, 2003). The extent of this marginalization varies, though, as it intersects with class, gender, and race/ethnicity relations occurring throughout the life course. A framework that accounts for intersecting relations of inequality helps to explain, for example, older adults’ differential access to care and involvement in caring relationships.

Theorizing age relations has much to contribute to critical understandings of later life care. Debates regarding the relative influence of structure and agency, however, point to the potential limits of age relations. This concept recognizes that individuals hold the capacity to exert agency in the context of structured social relations, but primarily emphasizes the structural conditions that disadvantage older adults. This focus on disadvantage might inadvertently contribute to older people’s powerlessness. To avoid this risk, age relations must be theorized from the standpoint of older adults’ everyday, lived experiences (King, 2006). Theorizing age relations in research on older adults’ experiences of giving and receiving care can shed light on a private setting in which relations of dependency, power, and control between and among members of different age groups are worked out.

References:

Calasanti, T. M. (2003). Theorizing age relations. In S. Biggs, A. Lowenstein & J. Hendricks (Eds.), The need for theory: Critical approaches to social gerontology (pp. 199-218). Amityville, NY: Baywood.

Calasanti, T.M. (2006). Gender and old age: Lessons from spousal care. In T. M. Calasanti, & K. F. Slevin (Eds.), Age matters: Realigning feminist thinking (pp. 269-294). New York: Routledge.

King, N. (2006). The lengthening list of oppressions: Age relations and the feminist study of inequality. Age matters: Realigning feminist thinking (pp. 47-74). New York: Routledge.

McMullin, J. A. (2000). Diversity and the state of sociological aging theory. The Gerontologist, 40(5), 517-530.

 

 

 

 

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:

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

‘Older carers: invisible but invaluable’ by Antony Smith

  • There are 2.8 million people aged 50 and over providing unpaid care in the UK, including 5% of people aged 85 and over.
  • A quarter of all carers aged 75 and over provide 50 or more hours of informal care each week.
  • Carers save the UK economy an estimated £87 billion a year.

At Age UK we hear from many people in later life who are caring for a spouse, partner, relative or friend. Although many find caring rewarding and an expression of their relationship, carers also tell us that they feel invisible and undervalued. Many are stressed and exhausted. Here is an excerpt from one of those personal stories.

Jenny and James

“James and myself were both looking forward to spending our retirement together, but four months after I retired, James became ill and was diagnosed with memory loss caused by depression. Five months later he became ill again, almost overnight, and was hospitalised. He was 71.

“Eventually I was told, because James had Lewy Body dementia, I’d never be able to look after him and that he had to go into residential care. With a nursing background, I thought I could care for James at our home and believed this would be better for his mental wellbeing, but no one listened.

“Once a social worker was assigned to our case, he said he would try and enable a care package where James could live at home with me. However once our financial assessment was done, and we weren’t eligible for funding support, we were left to get on with things ourselves. I set about arranging a care package, but it was a complicated task to do with no guidance. Luckily, I’m able to use the internet, but I dread to think how I would have sorted anything without it.

“After nearly three months in hospital, James finally came home in Feb 2011.

“Being a carer is exhausting – from the moment James wakes up he needs help with everything from moving and getting dressed to washing and going to the toilet. When I don’t have night cover I’m up about four times a night and can’t sleep during the day as James needs someone with him all the time. Because we hired support workers independently we have the same ones nearly every time. I think that’s really beneficial to James, as changing faces can be particularly disorientating for someone with dementia and they perform very personal tasks.

“I take James to a day centre twice a week and this is welcome relief for me. Unfortunately we’ve just been informed that because of local authority funding cuts the centre will close next year. There are about 20 of us who use the centre, and James really enjoys his time there.

“Every six weeks I also put James in respite care for a week, to give me a complete break. Unfortunately on his most recent trip when I went to collect him he had no shoes on, his glasses were missing and he was wearing someone else’s clothes. I could tell he was frightened and he had bruises on his body. When I got him home I discovered he’d lost 8lbs in seven days. I’ve made a formal complaint and am waiting to discover the outcome, but things like that shouldn’t be acceptable and obviously I haven’t felt like I could put him in that respite home since.

“I feel I have managed to come to terms with my feelings of loss and bereavement concerning James, which were overwhelming at the start, and I just have to get on with things. I try not to think about the future. James is getting weaker, and I’m getting older so I don’t know how long I’ll be able to manage and I don’t know what will happen when our money runs out.”

Age UK Is calling for more support for older carers – from government, local authorities and health professionals – such as a Carer’s Allowance for pensioners, a choice of appropriate services and regular carers’ health checks. You can find out more about our work to highlight the support older carers need, as well as the recognition they richly deserve, on Age UK’s website.

Antony Smith is Development Officer for Equalities and Human Rights at Age UK Antony.Smith@ageuk.org.uk