Editorial introduction: Special issue on Citizenship and Dementia

O’Connor, Deborah L.; Nedlund, Ann-Charlotte

doi:10.1177/1471301216647150

Cited by 22 publications

(9 citation statements)

References 8 publications

(11 reference statements)

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“…Sociological understandings of the experience of living with dementia are often situated within socio‐political discourses. While definitions of citizenship can be located within civil or political domains (Marshall ), it is the notion of ‘social citizenship’ that is increasingly relevant to understanding the dementia experience (O'Conner and Nedlund ). Citizenship can be considered a social construct, actively shaped over time: ‘it is a set of social practices which define the nature of social membership’ (Turner : 4).…”

Section: Introductionmentioning

confidence: 99%

Shifting dementia discourses from deficit to active citizenship

Birt

Poland

Csipke

et al. 2017

Sociology Health & Illness

102

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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 Some people publicly embrace a new identity whereas others withdraw, or are withdrawn, from society to live in the shadow of the fourth age.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. (A Virtual Abstract of this paper can be viewed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA).

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Section: Introductionmentioning

confidence: 99%

Shifting dementia discourses from deficit to active citizenship

Birt

Poland

Csipke

et al. 2017

Sociology Health & Illness

102

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“…Yet another body of literature shows that the practice of citizenship is situational, depending on other people (Österholm & Hydén, 2014), places, and materialities (Pols, 2016). Such conceptions of citizenship and dementia have been given more attention lately but are still underresearched and under-theorized (O'Connor & Nedlund, 2016;Österholm & Hydén, 2014). We would add that, even though they employ a relational approach, they continue to conceive of citizenship as a capacity pertaining to the individual, thus neglecting issues of the maintenance of citizenship, which is the problem this article addresses.…”

Section: Introductionmentioning

confidence: 99%

Citizenship as Distributed Achievement: Shaping New Conditions for an Everyday Life with Dementia

Ursin

Lotherington

2018

Scandinavian Journal of Disability Research

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Citizenship for people with a disability has become a notable subject within disability studies, but dementia has only sparingly been included in these studies. However, an important international debate on citizenship for people with dementia is emerging, highlighting rights, empowerment, agency, and new socio-political understandings. Yet, even though these studies often entail a relational understanding, they tend to perceive citizenship as allocated statically to individuals. This article contributes to the debate by conceptualizing relational citizenship as the distributed achievements of care-collectives consisting of a complex set of socio-material agents, including the person with dementia and the disease. Rather than adding more knowledge about experiences of dementia, the article develops an understanding of the critical mechanisms producing citizenship for all, and of care-collectives as potential facilitators for such distributed achievements. The results indicate that citizenship is a malleable and precarious enactment that needs continuous nourishment to be maintained, and that localized knowledge about the emergence and development of care-collectives is crucial for this maintenance and, hence, for shaping decent conditions for an everyday life with dementia.

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“…Personhood perspectives have been critical in reframing biomedical frames of reference that tend to pathologise the dementia experience (Innes & Manthorpe, 2012; Kaufmann & Engel, 2016). Research and care practices that recognise the social citizenship of people living with dementia have also been useful in countering and challenging common and negative social‐related discourse (Birt et al, 2017; O'Connor & Nedlund, 2016). Overall, these theoretical lenses were critical to recognising the essential personhood, agency and rights of each person who participated in this study.…”

Section: Research Studymentioning

confidence: 99%

Waiting for home: The experience of delayed discharge for people with dementia

Sakamoto

Phinney

Thompson

2022

Int J Older People Nursing

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Introduction Individuals who remain in hospital once their health has stabilised experience delayed discharge. This often occurs for people with dementia when care needs exceed what can be managed at home. There is little research that takes into account the experience and needs of these patients. This Interpretive Description (ID) study, theoretically grounded in personhood and social citizenship perspectives, focused on the perspectives of people with dementia experiencing delayed discharge to address this gap in research and to better understand how nursing care can be improved for them. Methods Twenty‐one individuals participated in this study: eight patient participants experiencing delayed discharge and living with dementia, six family members, and seven nurses. Data collection methods primarily included participant observations, totalling 100 h of observations. Fourteen semi‐structured interviews were also conducted with family members and nurses and with one patient participant. Informal conversations were undertaken with patient participants who did not take part in interviews. Results Thematic analysis resulted in three main themes, encapsulating the patients' experiences: (1) Living and Waiting; (2) Distress and Behaviours; and (3) Looking Beyond the Designation. Findings are discussed in the context of the passive nature of delayed discharge care, the need for person‐centred care, and prevailing discourses around the behavioural symptoms of dementia. Conclusion Implications for nursing practice include the need to acknowledge and foster the abilities of people with dementia. The behaviour narrative and labelling prevalent in hospitals must also be challenged. Lastly, nurses need to recognise the significant transition that is the delayed discharge experience, especially for people with dementia. This study advocates for person‐centred and inclusive nursing care, where ongoing needs are recognised and addressed, particularly for people with dementia experiencing delayed discharge, who are waiting for home.

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Editorial introduction: Special issue on Citizenship and Dementia

Cited by 22 publications

References 8 publications

Shifting dementia discourses from deficit to active citizenship

Shifting dementia discourses from deficit to active citizenship

Citizenship as Distributed Achievement: Shaping New Conditions for an Everyday Life with Dementia

Waiting for home: The experience of delayed discharge for people with dementia

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