Dualities of dementia illness narratives and their role in a narrative economy

摘要

The concept of ‘narrative economies’ has recently been proposed as a set of exchange relationships that, through biography and story‐telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre‐existing group of dementia advocates, representing the voices of those living with the condition. There are a growing number of people in the early stages of dementia – like our participants – being called upon to account for their experience, as a means of developing a politicised ‘collective illness identity’. These interviews present an opportunity to study a group of people who are actively involved in speaking as, and for, people with dementia. Four themes emerged from the data: becoming a voice of or for people with dementia; biographical reinforcement; responsibilisation; and resistance. These themes illustrate the ways in which people with dementia participate in their own identity construction and, as representatives of those living with dementia, they also illustrate the ways in which illness narratives produce material and symbolic value.