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Living with dementia,interdependence and citizenship: narratives of everyday decision-making
Authors:Sarah E. Keyes  Charlotte L. Clarke  Catherine E. Gibb
Affiliation:1. Edinburgh Centre for Research on the Experience of Dementia, School of Health in Social Science, University of Edinburgh, Edinburgh, UK;2. Formerly Northumbria University, Newcastle upon Tyne, UK
Abstract:This article 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 of everyday decision-making from people living with dementia 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 United Kingdom. The interviews were with 12 people with a diagnosis of dementia plus their nominated care-partner in a qualitative study which focused 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.
Keywords:dementia  citizenship  everyday decision-making  interdependence  Ethic of Care
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