Shifting dementia discourses from deficit to active citizenship.
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 Some people publicly embrace a new identity whereas others withdraw, or are withdrawn, from society to live in the shadow of the fourth age.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).
School of Health Sciences, University of East Anglia, UK.
Linda
L
Birt
School of Health Sciences, University of East Anglia, UK.
Fiona
F
Poland
Division of Psychiatry, University College London, UK.
Emese
E
Csipke
Research Department of Clinical, Educational and Health Psychology, University College London, UK.|Research and Development Department, North East London NHS Foundation Trust, UK.
Georgina
G
Charlesworth
D060825:Cognitive Dysfunction / Q000523:psychology*; D003704:Dementia / Q000523:psychology*; D006801:Humans; D033262:Narration; D026684:Personal Autonomy; D036301:Qualitative Research; D058992:Social Participation / Q000523:psychology; D012961:Sociology; D035501:Uncertainty
agency; citizen; dementia; liminality