Perspectives on Dementia: Insights from a Study of Characters and Readers in Dementia Fiction

  • Carney, G. (Invited speaker)
  • Lugea, J. (Invited speaker)
  • Carolina Quintanilla-Fernandez (Invited speaker)
  • Paula Devine (Keynote speaker)

Activity: Talk or presentation typesInvited talk


Critical gerontology is concerned with uncovering the absences and silences that contribute to social, political or economic disadvantages that may accompany human ageing. In this paper, we combine this approach with literary linguistics to analyse literary representations of dementia dementia – an illness that has become increasingly synonymous with ageing in public and policy debates in recent decades. An aim of the study is to use fiction to better understand the internal lives of people living with dementia (pwd), the majority of which are older. The project uses extracts from 12 prose texts (from novels and short stories) 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 extracts from novels including Still Alice (Genova, 2007); The Wilderness (Harvey, 2009) and Elizabeth is Missing, (Healey, 2015).
Given recent strides made by people with dementia in representing their own lives (see Davies, Houston, Gordon, McLintock, Mitchell and Shakespeare, 2021), the aim of this paper is to amplify the voices of pwd in our study. 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 present codes and preliminary findings from our critical gerontology/linguistic analysis using ATLAS.ti.
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 preliminary findings suggest that fictional characters are a potentially powerful means of augmenting understanding of the perspective of people with dementia - one of the most marginalized groups of disabled people in developed societies (Townsend, 2006).
Period25 Nov 2021
Event titleLanguage Ideology and Power Research Group Seminar Series
Event typeSeminar
LocationLancaster, United KingdomShow on map
Degree of RecognitionNational