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Images of dementia

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Lorna's mumWhen my mum was diagnosed with terminal cancer at the age of 66, one of the clear thoughts that stood out amongst the jumble of emotions knocking me sideways was that I would not now witness her with dementia. My maternal grandmother had developed dementia, as had her mother. I hadn't known either of these close relatives but woven through the accounts of family health were threads of dementia and the suggestion that this 'illness' was sewn into the genes of the female line.

Marriage in her late thirties had moved my mum many miles away from her by then widowed mother. The birth soon after of my sister, and then of me, kept my mum in Coventry, unable to provide support to her mother as glaucoma robbed her of her sight and dementia compromised her confidence. My grandmother continued to live with her youngest son in the family home, until her level of frailty and his schizophrenia pushed their precarious arrangement of mutual dependence and care beyond its limits. An uncharacteristic act of forward planning, my grandfather had reserved a place in a 'retirement village' in Surrey, and this is where my grandmother now moved, leaving my uncle in Newcastle to fend for himself as best he could.

I was only six years old when I discovered my mum at the kitchen sink, sobbing fat tears of loss, guilt and fear: her mother had died alone in the care home and my mum didn't want to step into her shoes.

KathNearly half-a-century on, and my understanding of dementia has changed radically. That there are different types or causes of dementia has become relatively common knowledge, calling into question the idea that it is necessarily a hereditary condition. My career as a researcher has brought me into contact with people experiencing dementia in a range of situations and care contexts. I have seen the many and varied responses of those individuals as well as their carers, locating them in their life stories as well as wider socio-cultural and policy contexts. There are clearly gendered patterns in everyday decision-making between couples where one of them has dementia, and in the expression and the facilitation of agency. Researchers are mapping and analysing both aspects, recognising that they are framed by dominant understandings of cognitive, rather than social competence as well as by expectations concerning the division of household labour and persisting patterns of dominance and control (Boyle, 2013 a, b, c and d; Warren and Walker, 1996).

And then there has been Kath, a retired neighbour who became a close and deeply loved friend when she crossed the road to take my tiny newborn baby from my arms and, over the next year, helped to look after her until I waited for a place at the University Nursery to become free. Kath had spent her life caring. She effectively acted as a mother to her twin sisters, 15 years her junior, after their mother fell pregnant unexpectedly at 50. She went on to become a nursing sister at the local hospital, working shifts while she raised three sons of her own. When I got to know her, she was caring for her brother who had Lewy bodies, resisting the open acknowledgement that she herself was experiencing his early symptoms. She arrived at my house armed with 'reminder' lists, left without many of the things she'd brought with her, and delivered the warmest, tenderest care to my daughter who adored her.

But there is still a long way to go in terms of the representation of dementia. I am aware that the rather dark images of dementia with which I grew up with are still pervasive. The Representing Self – Representing Ageing project – more familiarly known as Look At Me! - which I recently headed (http://www.representing-ageing.com/) was designed to enable older women to work together to identify and critique dominant representations of women in popular culture and to use creative media to make their own individual images of ageing. A number of the participants in the project identified "images of old women with Alzheimer's" and/or in institutions as images they did not like, conceding that it was because they did not want to be reminded of their own ageing process (Warren and Richardson, 2013). A proposal to run the Look At Me! project with specific groups including older women at the early stages of Alzheimer's was turned down because of reviewers' concerns with ethics.

Women are both avoiding and being denied opportunities to represent an important aspect of our lives. It is crucial, then, that our experiences of dementia are captured in the round to show the profound and highly nuanced impact of gender and what better way to start than with women's personal narratives, oral and visual.

References

Boyle, Geraldine (2013d). 'She's usually quicker than the calculator': financial management and decision-making in couples living with dementia. Health and Social Care in the Community, 21(5) pp. 554–562.

Boyle, Geraldine (2013c). 'Can't cook, won't cook': men's involvement in cooking when their wives develop dementia. Journal of Gender Studies (In press).

Boyle, Geraldine (2013b). Still a woman's job: the division of housework in couples living with dementia. Families, Relationships & Societies, 2(1) pp. 5–21.

Boyle, Geraldine (2013a). Facilitating decision-making by people with dementia: is spousal support gendered? Journal of Social Welfare and Family Law, 35(2) pp. 227–243.

Walker, A. and Warren, L. (1996) Changing Services for Older People: The Neighbourhood Support Units Innovation, Buckingham: Open University Press.

Warren, L. and Richards, N. (2012) '"I don't see many images of myself coming back at myself': representations of women and ageing', in Ylänne, V. (ed) Representing Ageing: Images and Identities. Basingstoke: Palgrave, 149-168.

Dr Lorna Warren, Senior Lecturer in the Department of Sociological Studies, University of Sheffield

Tags: daughters and mothers, female roles, representations of women, women with dementia Written 2014-11-10

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