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Shifting dementia discourses from deficit to active citizenship

Birt, L; Poland, F; Csipke, E; Charlesworth, G; (2017) Shifting dementia discourses from deficit to active citizenship. Sociology of Health & Illness , 39 (2) pp. 199-211. 10.1111/1467-9566.12530. Green open access

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Abstract

Within western cultures, portrayals of dementia as ‘a living death’ are being challenged by people living with the diagnosis. Yet dementia remains one of the most feared conditions. The sociological lens of citizenship provides a conceptual framework for reviewing the role of society and culture in repositioning dementia away from deficit to a discourse of agency and interdependence. Awareness of cognitive change, and engaging with the diagnostic process, moves people into a transitional, or ‘liminal’ state of uncertainty. They are no longer able to return to their previous status, but may resist the unwanted status of ‘person with dementia’. Drawing on qualitative studies on social participation by people with dementia, we suggest that whether people are able to move beyond the liminal phase depends on acceptance of the diagnosis, social capital, personal and cultural beliefs, the responses of others and comorbidities. Some people publicly embrace a new identity whereas others withdraw, or are withdrawn, from society to live in the shadow of the fourth age. We suggest narratives of deficit fail to reflect the agency people with dementia can enact to shape their social worlds in ways which enable them to establish post-liminal citizen roles. (A Virtual Abstract of this paper can be viewed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA)

Type: Article
Title: Shifting dementia discourses from deficit to active citizenship
Open access status: An open access version is available from UCL Discovery
DOI: 10.1111/1467-9566.12530
Publisher version: http://doi.org/10.1111/1467-9566.12530
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: dementia, citizen, agency, liminality
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
URI: https://discovery.ucl.ac.uk/id/eprint/1550123
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