Towards living well with young onset dementia: An exploration of coping from the perspective of those diagnosed

Clemerson, Gemma; Walsh, Sue; Isaac, Claire L.

doi:10.1177/1471301212474149

Cited by 71 publications

(132 citation statements)

References 39 publications

Supporting

Mentioning

128

Contrasting

Order By: Relevance

“…The focus on a person with early onset dementia is also useful, as research has tended to focus on older people with the condition (Clemerson et al . ).…”

Section: Methodsmentioning

confidence: 99%

Narrative collisions, sociocultural pressures and dementia: the relational basis of personhood reconsidered

Tolhurst

Weicht

Kingston

2017

Sociology Health & Illness

View full text Add to dashboard Cite

The concept of personhood developed by Tom Kitwood highlights that the experience of dementia has relational dimensions that transcend the neurodegenerative impacts of the condition. This relational focus, however, has been narrowly conceptualised, with the impact of broader sociocultural factors on experience underplayed. The empirical exploration of interaction also requires reinforcement: a tendency for dyadic studies to portray findings in an individualised format hinders the interrogation of interpersonal negotiations. This article draws upon qualitative research that employed a joint interview approach, interviewing men with dementia and their spousal carers together. The focus on a dyadic case study from this research enables methodical exploration of the experience of living with dementia. This is realised by considering the socially-framed perspective of each person, and then how their perspectives are interwoven within interactional exchanges. This provides a platform for the evaluation of the current decontextualised notion of personhood and its implications. It is concluded that a sociologically-informed perspective can help to reinforce the academic understanding of personhood.

show abstract

“…The focus on a person with early onset dementia is also useful, as research has tended to focus on older people with the condition (Clemerson et al . ).…”

Section: Methodsmentioning

confidence: 99%

Narrative collisions, sociocultural pressures and dementia: the relational basis of personhood reconsidered

Tolhurst

Weicht

Kingston

2017

Sociology Health & Illness

View full text Add to dashboard Cite

show abstract

“…(5) Related exclusively to young-onset dementia as the needs and experiences of people with youngonset dementia are likely to be distinct and divergent from those of older people and therefore deserve attention in their own right (see e.g. Clemerson, Walsh, & Isaac, 2013). (6) Prioritized the views of family or professional care-givers over those of people with dementia.…”

Section: Search and Inclusion Strategymentioning

confidence: 99%

Living positively with dementia: a systematic review and synthesis of the qualitative literature

Wolverson

Clarke

Moniz-Cook

2015

Aging & Mental Health

View full text Add to dashboard Cite

show abstract

“…, Clemerson et al . , Preston et al . ), illustrating the need for effective, understanding support systems if people are to enact citizenship roles.…”

Section: Post‐liminal Destinationsmentioning

confidence: 99%

Shifting dementia discourses from deficit to active citizenship

Birt

Poland

Csipke

et al. 2017

Sociology Health & Illness

102

View full text Add to dashboard Cite

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).

show abstract

Towards living well with young onset dementia: An exploration of coping from the perspective of those diagnosed

Cited by 71 publications

References 39 publications

Narrative collisions, sociocultural pressures and dementia: the relational basis of personhood reconsidered

Narrative collisions, sociocultural pressures and dementia: the relational basis of personhood reconsidered

Living positively with dementia: a systematic review and synthesis of the qualitative literature

Shifting dementia discourses from deficit to active citizenship

Contact Info

Product

Resources

About