Abstract
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.
Highlights
Combatting the challenges posed by dementia has become a priority, across nations, for policymakers (WHO 2015) and for biomedical science and research communities (Winbald et al 2016)
With medical and policy initiatives aligned to focusing on diagnosing those with dementia at an earlier stage (DOH 2016), it has become increasingly possible to hear the previously unheard voice of people with early signs of dementia (Beard 2004). We can see this manifested in many ways including depictions in mainstream press, in dementia research which increasingly includes people with dementia as co-producers of research (‘nothing about us without us’ – Bryden 2015), books and collections of personal accounts describing what it is like to live with dementia, and third sector campaigns in which the voice of those with dementia is a central focus
Our participants’ stories are conceptualised as dementia illness narratives and we explore these narratives through Burchardt’s (2016) concept of narrative economies
Summary
Combatting the challenges posed by dementia has become a priority, across nations, for policymakers (WHO 2015) and for biomedical science and research communities (Winbald et al 2016). This is helpful in seeking to understand the accounts of those who wish to represent what it is like to live with dementia – not just to reflect their personal experience but to use their story as a means of affecting others.
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