Perspectives on dementia: insights from a study of characters and readers in dementia fiction

In this paper, we combine critical gerontology with literary linguistics to analyse fictional representations of dementia. An aim of the study is to use fiction to better understand the internal lives of people living with dementia (pwd), the majority of whom are older. The project uses extracts from 12 novels containing first-hand accounts of fictional characters with dementia to explore how readers with varying personal experiences of dementia relate to stories, scenarios and relationships of fictional characters. Readers were purposively sampled for separate reading groups– student social workers; members of the general public; carers of people with dementia; and people living with dementia. Over a six-week period they engaged in facilitated group discussions of the extracts. We are mindful of the potential of imaginative writing to mediate and construct a reality (Zeilig, 2011: 22) and so have engaged in a linguistic rather than literary evaluation of dementia fiction. We find that gathering a group of people with a shared experience of living with dementia allows us to cross the boundary between private and public experiences of living with dementia. It also provides some insight into how people with dementia manage their self-doubt and personal relationships when living with an illness that erodes their cognitive health. These findings suggest that fictional characters are a potentially powerful means of augmenting understanding of the perspective of people with dementia.