Giving Them a Voice: Challenges to Narrative Agency in People with Dementia

Abstract

In this paper, we argue that the capacity for narrative agency is significantly compromised in individuals with dementia due to at least three factors: (a) Dementia itself, which causes increasing difficulties in constructing and articulating coherent and meaningful stories, and sharing them with others; (b) cultural narratives about dementia, which promote an extremely negative and pessimistic view of those with the disease; and (c) the convergence of these two last factors, which can lead to caregiving interactions that do not support storytelling and can even stop people with dementia from telling stories. We highlight the importance of narrative care, which involves interventions that focus on the person and their unique life narrative. In narrative care, people with dementia are treated not as impaired patients defined by the disease, but as human beings. In doing so, people with dementia can have their own voices back, which is silenced and discredited so many times.

Keywords

• person-centered care
• dementia
• narrative care