Sometimers, Alzheimer’s? I love That! That’s definitely me”: Readers’ Responses to Fictional Dementia Narratives

Abstract

This article presents findings from an interdisciplinary project which invited readers to experience the impact of dementia via fictional characters’ narratives. Combining methods from critical gerontology and literary linguistics—a field that examines the language of literature—we undertook an empirical reader response study of dementia fiction. We constructed a large corpus of dementia fiction; selecting 12 extracts, each containing first-hand, focalized accounts of fictional characters’ experiences of living with dementia. Readers (31) were purposively sampled for 4 separate reading groups—student social workers (9); general public (9); family carers (6); and people with dementia (7). Over 6 weeks they engaged in separate, facilitated, on-line group discussions of extracts. Discussions were independently coded using ATLAS.ti.

Although readers from all 4 groups reported that fictional characters drew them into the internal life of someone with dementia, some carers questioned whether fictional characters’ experiences were plausible. Readers with dementia recognized themselves in the extracts; viewing fictional characters as eloquent envoys of their lived experiences of diagnosis, social isolation, loss of language, and use of humor.

Fictional characters offer an entry point for understanding contrasts in caregiver and care-receiver experiences of dementia. Fictional characters are potentially useful for moving dementia narratives beyond monstrous cultural metaphors and onto a disability-based rights agenda.