Testing times: exploring everyday life with dementia through narrative-in-action
Barrie, Karen Anne
MetadataShow full item record
This thesis explores the ongoing accomplishment of ordinary life with dementia and asks how older people variously negotiate and make sense of the obstacles, dilemmas and opportunities of everyday life as lived. The thesis responds to persistent calls to recognise the heterogeneity of people living with dementia and to challenge predominantly negative cultural stereotypes. It draws together parallel developments in contemporary dementia studies, namely the extension of social citizenship into the realm of the ordinary and fresh critiques of the biomedicalisation of ageing, particularly the rapid expansion of its technologies into the domain of cognitive impairment. In different ways, these developments bring a more overtly political impetus to the research agenda. The research study takes the form of ‘narrative-in-action’ (Alsaker et al, 2009), a mode of Narrative Inquiry that combines Paul Ricoeur’s (1984) early narrative theorising with ethnographic methods. The study expands the theoretical underpinnings of this methodology by engaging more deeply with Ricoeur’s (1992) elaboration of the dynamic relationships between narrative and life, narrative and temporality, and incorporating critical insights from narrative gerontology. The resultant methodology facilitates an understanding of experiences as expressed in practice and through time by embodied, emotional, relational persons. The study explores the everyday life of three couples, one man and one woman (aged 78-85 years) residing at home in a small Scottish town. This entailed meeting regularly with each person or couple over a period of six or seven months and participating in their choice of everyday activities. The length and intensity of involvement required careful deliberation about the creation and ongoing negotiation of uniquely constructed relationships that altered and deepened as the study progressed. Narrative analysis engaged with events, happenings and the various shifting and patterned meanings made within the flow of actions in different settings and over time, and was informed by Ricoeur’s (1984, 1992) notions of mimesis, emplotment and narrative identity. The resultant narratives offer a nuanced understanding of different ways of living with dementia in later life. They illustrate how meanings were made in different situations and over time, depicting diverse implicit or purposeful ways of resisting the dominant cultural narrative of loss and contributing to ordinary social life. These distinctions were manifest in the dynamic, dialogic configuration of identities. Despite these differences, the spectre of testing coloured each narrative, extending its reach into recollections of the past and also influencing the ways in which future possibilities were embraced, discounted or denied. This spectre also impacted upon the larger task of trying to make meaning of life as a whole in the face of ageing and memory loss. The thesis augments current conceptualisations of citizenship-as-practice in dementia studies through the construct of recognition. It also highlights the potential of the narrative-in-action methodology to enrich the notion and study of ‘narrative citizenship’ (Baldwin, 2008); in this study, it facilitates an understanding of later life with dementia that is optimistic but not naïve. Taken together the narratives illuminate the risks of prescribing how people should respond to a diagnosis based on observations of how some individuals adapt successfully. Finally, the thesis concludes that unless we attend to productive as well as repressive forms of power, there may be increasingly testing times ahead for us all.