Stories of professional care: Narrative analysis of accounts from people with dementia

UK dementia care policy and practice guidelines (e.g. Department of Health,
2012; National Institute for Health and Care Excellence, 2011) construct
narratives of disease epidemic, financial and emotional burden and poorly
theorised and operationalised aims. From a social constructionist perspective
these public narratives create the space in which individual care experiences of people with labels of dementia take place. A review of current representations of user experiences in dementia care research points to a significant gap, particularly within academic research, where these experiences remain seldom heard, under-theorised and de-politicised.

The current research aimed to elicit narrative accounts of the professional care experiences of people with labels of dementia to contribute to the development of dementia care theory and practice based upon, and responsive to, individual experiences. Accounts were elicited across voluntary and statutory dementia services via three one to one unstructured interviews, and a group of five service users meeting over three occasions. Narrative analysis of participants’ accounts attended to personal and collective stories told and the dialogical relationships between narrator and audience within the broader socio-political context (Phoenix, 2008; Stephens & Breheny, 2013).

The communicative and narrative abilities of older people with labels of dementia were demonstrated as participants’ (co)constructed preferred identities, took up, were assigned and attempted to resist a range of positions (e.g. experienced, independent, passive and vulnerable) and imagined alternative possibilities for care, such as interdependence. Reder and Fredman’s (1996) ‘relationship to help’ framework was drawn upon to make sense of interactions in participants’ accounts between diverse perspectives and life histories with a much smaller repertoire of public narratives associated with dementia care. In privileging experiential knowledge, and attending to the language used by people with labels of dementia, the findings indicate possibilities for citizenship models of dementia based upon relational support, personal agency and compassion.