Living with dementia, interdependence and citizenship: Narratives of everyday decision making

Sarah Keyes, Charlotte Clarke, Catherine Gibb

Research output: Contribution to journalArticlepeer-review

Abstract

This paper argues that interdependent relationships are key in realising inclusion and citizenship for people living with dementia. We focus on decision-making as one aspect of everyday life which reflects opportunities and challenges associated with citizenship. Accounts from people living with dementia of everyday decision-making provide insight into strategies for negotiating responsibilities as they shifted with dementia. An inductive, secondary data analysis developed decision narratives from the data of 61 interviews conducted in the UK. The interviews were with 12 people with a diagnosis of dementia plus their nominated care-partner in a qualitative study which focussed on information management and sense of self. The secondary data analysis identified strategies for inclusion, emphasising relational interdependency amidst challenges. The five-stage framework of an Ethic of Care positions this interdependency as a response to barriers to inclusion and citizenship. Interdependency, therefore, emerges as key to realising relational citizenship.
Original languageEnglish
JournalDisability and Society
Early online date29 Dec 2018
DOIs
Publication statusE-pub ahead of print - 29 Dec 2018

Keywords

  • dementia
  • citizenship
  • everyday decision-making
  • interdependence
  • Ethic of Care

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