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

Gemma Carney*, Jane Lugea, Carolina Fernandez-Quintanilla, Paula Devine

*Corresponding author for this work

Research output: Contribution to conferencePaperpeer-review


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.

Original languageEnglish
Publication statusUnpublished - 08 Jul 2022
Event51st British Society of Gerontology Annual Conference 2022 - University of the West of England (held online), Bristol, United Kingdom
Duration: 06 Jul 202208 Jul 2022


Conference51st British Society of Gerontology Annual Conference 2022
Abbreviated titleBSG 2022
Country/TerritoryUnited Kingdom
Internet address


  • ageing
  • gerontology
  • dementia
  • linguistics
  • social policy
  • reading

ASJC Scopus subject areas

  • General Arts and Humanities
  • General Social Sciences


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