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

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.