The experience of caring for someone with dementia: a biographical study

Abstract

This research was about the lived experience of caring for someone with dementia. Six informal carers of people with dementia were interviewed. The carers were defined as ‘informal’ as they were family and friends, and therefore unpaid. Five of the carers were women who had or were supporting their mothers, and one was a man, who had cared for a friend. Three carers identified as lesbian or gay. I wanted to hear the stories of a group that are generally neglected in research (Turnball, 2002). Carers are diverse with a range of needs, and I wished to discover if services were ‘gay friendly’ or implicitly heterosexist. In addition I wanted lesbian and gay carers’ stories to be heard and their contribution to be recognised. The research is important as there are an estimated 750,000 people living with dementia in the UK and 500,000 partners, family members and friends are involved in caring for someone with dementia at a value of £6 billion a year, if care was provided by health and social care services (Department of Health, 2009).

The research method was biographical in relation to the participants’ caring role. It explored three areas: the experience of caring, coping approaches and encounters with health and social care services. The interviews with carers took place in 2010 and the cared for had, or were living in: London, Wales, south-east and north-west England. The theoretical perspective of the research was person centred (Kitwood, 1997) set within the legislative and social policy framework for carers. The data was analysed primarily through pre-determined codes arising from the interview schedule and Skills for Care ‘Core Principles for Carers’ (2010) but also searching for patterns within and across cases.

The findings were that the carers did not experience the person with dementia as a burden, but contact with health and social services was often problematic due to the fragmentation of services, lack of one practitioner co-ordinating care, and an absence of knowledge about carers’ legal entitlements. In addition services adopted a medical model of care focusing on the dementia of the cared for with limited interest in the cared for or carer’s biography, consequently services were not person centred, or gay friendly. Carers’ commitment to the person with dementia was on a continuum between the obligations of kinship and unconditional love. Positive aspects in the relationships endured in particular humour and shared activities.

The messages for practice were that health and social care practitioners require training in person centred practice, as well as the legislation and policy framework for carers. Personalisation of services provides opportunities for shifting services from a task centred to person centred approach, including the development of gay friendly services
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ORCID for Melanie Nind: orcid.org/0000-0003-4070-7513

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