Shifting dementia discourses from deficit to active citizenship

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 Some people publicly embrace a new identity whereas others withdraw, or are withdrawn, from society to live in the shadow of the fourth age.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).

Disruptive illness contexts and liminality in the accounts of young people with type 1 diabetes

“…Similarly, dementia could lead individuals to move into a post‐liminal state as either active or passive citizens in the way they respond to the illness (Birt et al . ).…”

“…Saunders (2018) found that people with sciatica rejected their diagnosis as representing 'the real me', sometimes leading to proactive illness management to assert control over symptoms. Similarly, dementia could lead individuals to move into a post-liminal state as either active or passive citizens in the way they respond to the illness (Birt et al 2017).…”

Dementia Friendly Communities in England: A scoping study

“…The involvement of people living with dementia and their supporters and carers in the setting up, running, and monitoring of DFCs indicates their recognition as experts by experience or active agents able to direct, contribute, and participate. 17,36 There was evidence of involve-…”

“…12 Calls for recognition of the human rights of people living with dementia have been growing louder in recent years. 2 This ranges from studies on what it means to be a citizen with dementia 16,17 to evaluations of communities' activities 18 and evaluations of dementia-sensitive infrastructure such as transport and the design of public and commercial buildings. 2 This ranges from studies on what it means to be a citizen with dementia 16,17 to evaluations of communities' activities 18 and evaluations of dementia-sensitive infrastructure such as transport and the design of public and commercial buildings.…”

“…[13][14][15] There has been growing interest in the concept of DFCs, and a substantial body of research exists. 2 This ranges from studies on what it means to be a citizen with dementia 16,17 to evaluations of communities' activities 18 and evaluations of dementia-sensitive infrastructure such as transport and the design of public and commercial buildings. 19,20 Most published evaluations of DFCs were completed within the first few years of the initiatives having been set up.…”