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

Abstract

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.

Mapping empirical experiences of Tom Kitwood's framework of person‐centred care for persons with dementia in institutional settings. A scoping review

“…The importance of positive relations is in agreement with Tolhurst et al. , who stressed the significance of interconnectedness and interdependencies of relationships in the maintenance of personhood and argued for these dynamics as a focus for further research in dementia care.…”

Care workers, the unacknowledged persons in person-centred care: A secondary qualitative analysis of UK care home staff interviews

“…This is achieved by reducing agitation and other neuropsychiatric symptoms, and improving quality of life [ 7 , 8 ]. Close family bonds and professional care relationships are important in sustaining the personhood of people with dementia and enhancing care quality [ 9 , 10 ], so a sociologically informed perspective on personhood in dementia care is important [ 11 ]. Previous authors have called for more relationship-focused care, focussed on maintaining the wellbeing of family carers as well as people with dementia [ 12 , 13 ].…”

Facing dementia as a we: Investigating couples’ challenges and communicative strategies for managing dementia

“…The starting point for this thesis was the fact that couples living with dementia manage life for a long time with no, little or unsatisfactory support from social services (Johnston and Terp, 2015;Meyer, 2017;Tolhurst et al, 2016), and that more knowledge is needed in order to support gerontological social work with people with dementia (Kaplan & Berkman, 2011).…”

“…Despite this, within the field of social work, knowledge is scarce in terms of the lives of families and couples living with dementia, and the challenges they face (for some recent exceptions, see e.g. Christie, 2016;McGovern, 2011;Tanner, 2013;Tolhurst, Weicht & Kingston, 2016). By investigating dementia-related challenges faced by couples, this thesis contributes knowledge on the topic of dementia which can be used by social services in the assessment process, and to provide appropriate support.…”

“…Research on support for couples facing dementia indicates that the process of requesting and obtaining information about the illness is crucial but often insufficient (Johnston & Terp, 2015;Meyer, 2017;Tolhurst et al, 2016). There are few current studies on how couples collaborate to talk about their future with dementia and what it may entail, or studies on how they adapt to it as a couple and as individuals (see e.g.…”