Coping but not allowing the coping to be everything: Resilience in informal dementia care

Jones, Susan May, Mioshi, Eneida and Killett, Anne ORCID: (2019) Coping but not allowing the coping to be everything: Resilience in informal dementia care. Health and Social Care in the Community, 27 (4). e289-e297. ISSN 0966-0410

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Health and social sciences literature recognises the significance of psychological resilience in relation to stressful life events. Providing ongoing care for a friend or relative with dementia can be inherently stressful. The aims of this qualitative study were to: (a) explore discrepancies and congruency between definitions of resilience in the academic literature and carers own conceptualisations; (b) assess differences and similarities in conceptualisations of resilience between carers with high, medium and low resilience scores; (c) compare carers’ perceived level of resilience with the level of resilience when measured on a standardised tool. Participants were recruited from an earlier study examining levels of resilience and well-being in UK carers of people with dementia. A subset of carers were identified using theoretical sampling, to ensure a diversity of participant characteristics and caring experience. Thirteen carers took part in semi-structured interviews between September and October 2017. Interpretative description was used to elicit findings relevant to clinical practice. We found carers’ definitions were concordant with clinical and academic definitions described in the literature. However, they extended the concept and placed greater value on the role of self-compassion. Carers recognised that the appearance of resilience may have negative consequences in terms of securing support from others. Scores on the Brief Resilient Coping Scale did not always match carers’ own perceptions of their level of resilience. Additionally, service providers’ offers of support did not always reflect carers’ priorities. Aligning these two areas would better enable carers and providers to work together to identify resources to support resilience.

Item Type: Article
Uncontrolled Keywords: dementia carer resilience,social sciences (miscellaneous),sociology and political science,health policy,public health, environmental and occupational health,sdg 3 - good health and well-being ,/dk/atira/pure/subjectarea/asjc/3300/3301
Faculty \ School: Faculty of Medicine and Health Sciences > School of Health Sciences
UEA Research Groups: Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life
Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health
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Depositing User: LivePure Connector
Date Deposited: 13 Jun 2019 09:30
Last Modified: 19 Oct 2023 02:25
DOI: 10.1111/hsc.12732

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