Dementia in the minds of characters and readers – a transdisciplinary study of fictional language

The concept of personhood in dementia has maintained its status as the definitive approach to dementia care. Personhood works at both practical and philosophical levels to maintain the humanity of people with dementia. The project described in this article used the concept of personhood to design community-engaged research which harnessed the power of literary language to access the internal life of a person with dementia. Here we outline the design and methods in detail, homing in on our main conclusion that literary language is a powerful tool in helping diverse stakeholder groups access the person in dementia. The research comprised three inter-linked strands. In Strand One we built a corpus of dementia fiction from which we identified twelve extracts from contemporary novels offering the internal perspective of a person with dementia. Strand Two involved six weekly meetings of separate reading groups with four distinct stakeholder groups – student social workers, members of the public, family carers, and people with dementia. The four groups engaged in separate, facilitated discussions of the extracts. This aspect of the project is unique as to the best of our knowledge no previous research has analysed readers’ responses to extracts of fictional characters’ narration of living with dementia. Strand Three was led by a well-known writer and comprised a series of public events and outputs which engaged readers and authors of dementia fiction with the genre. A dementia fiction festival and writer workshops resulted in publication of an anthology of short stories which included stories addressing a deficiency of racial and ethnically diverse characters noted in our corpus. The article concludes by discussing how working across disciplines and sectors to engage with dementia as a cultural as well as a clinical challenge has the potential to facilitate the understanding and emphasis of personhood in dementia studies.