Narrative citizenship, resilience and inclusion with dementia: On the inside or on the outside of physical and social places

Abstract

There has been little research that addresses the importance of place in enabling resilience and citizenship – most to date focussing on these as a characteristic of the individual. This paper reports on findings from a qualitative study that aimed to explore the everyday experiences of living with dementia within rural and semi-urban communities. Data collection included a sequence of four research diaries and interviews with 13 families living at home with dementia and interviews with service providers and commissioners (a total of 57 diaries, 69 interviews with people living with dementia and 6 interviews with service providers and commissioners). Key themes identified included: Others Knowing and Responding; Socially Withdrawing and Feeling Excluded; Sustaining and Changing Activities; Belonging and Estrangement from Place; Engaging Services and Supports. The study found that familiarity with people and place can be supportive, and these factors support a narrative citizenship in which people can tell a story of inclusion and feeling on the inside. However, this familiarity with place may also create a social barrier and a sense of estrangement, or being on the outside. Narrative citizenship allows us to explore how people with dementia position themselves in relation to others and in so doing, negotiate their own and other’s understandings of dementia. It also allows for people to tell stories about themselves in relation to their sense of belonging in a social and physical place, which augment the personal and political approaches to citizenship and thus offers an approach that enhances individualised yet collective understandings of living with dementia.