Shifting dementia discourses from deficit to active citizenship

Linda Birt, Fiona Poland, Emese Csipke, Georgina Charlesworth

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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 Some people publicly embrace a new identity whereas others withdraw, or are withdrawn, from society to live in the shadow of the fourth age.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.
Original languageEnglish
Pages (from-to)199–211
Number of pages13
JournalSociology of Health & Illness
Issue number2
Early online date8 Feb 2017
Publication statusPublished - Feb 2017


  • dementia
  • citizen
  • agency
  • liminality

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