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.

Dementia‐friendly community indicators from the perspectives of people living with dementia and dementia‐family caregivers

“…On the other hand, one participant with dementia expressed his need to be valued this way: 'I think this [community involvement] is needed; patients really need to participate in the community.' (Chen & Chen, 2017 (Chen & Chen, 2017).…”

“…Another issue found to be important for people with dementia and their family caregivers for participating in leisure activity was accessibility to places they could visit (Innes, Page, & Cutler, ). A recently explored aspect of DFCs is the concept of social citizenship (a sense of belonging in a place) as a human rights issue for people with dementia (Bartlett, ; Charras, Eynard, & Viatour, ; Clarke & Bailey, ). Finally, supportive and responsive environments in long‐term care settings, but not yet in community settings have been shown to positively affect the health, everyday activities, quality of life, and well‐being of people with dementia (Chaudhury, Cooke, Cowie, & Razaghi, ; Landmark, Kirkehei, Gundro Brurberg, & Merete Reinar, ; Woodbridge et al, ).…”

“…Another issue found to be important for people with dementia and their family caregivers for participating in leisure activity was accessibility to places they could visit (Innes, Page, & Cutler, 2015). A recently explored aspect of DFCs is the concept of social citizenship (a sense of belonging in a place) as a human rights issue for people with dementia (Bartlett, 2016;Charras, Eynard, & Viatour, 2016;Clarke & Bailey, 2016).…”

‘Dementia-friendly communities’ and being dementia friendly in healthcare settings

“…Additionally, this study also pointed out that the reliance on stakeholder involvement might lead to potential long-term sustainability issues of dementia-friendly communities. Several studies also examined citizenship in the context of dementia-friendly communities, as well as how place and environmental designs influenced resilience and narrative citizenship of PWD and families [31▪,32,33]. These investigations echoed the growing attention to PWDs human rights in defining dementia-friendly communities.…”

Social citizenship and people with dementia : Designing social care policies in Sweden

“…Sonnicksen (2016) has problematized the relationship between people with dementia, democracy and full citizenship and concludes that there are challenges and implications for promoting full citizenship in regards to democracy concerning people with dementia. Clarke & Bailey (2016) have studied people with dementia through narrative citizenship and explore how people with dementia can display their understanding, and also influence others, concerning the view of dementia. Studies that emphasise citizenship as practice, i.e.…”