Abstract
The aim of this study was to identify how the family care of people living with dementia could be supported to make reliance on family care sustainable in the long term despite the impact of stress. A Realist Evaluation (Pawson & Tilley, 1997) was conducted to investigate this aim. An initial review established 'coping' as a primary means of mediating stressors associated with caregiving. However, there was a need to specify which coping approaches/strategies are most effective. In-depth interviews were conducted with a purposive sample of family carers (n=18) in a suburb in North East England from 2016 to 2017. Analysis of the data revealed 'social coping' (SC) that included an emotional support component as a critical mediator of family carer stress. Several key hindrances to the utilisation of SC, including underpinning causal factors, are explicated. Ways in which these hindrances might be overcome are discussed and guidelines introduced for how family carers, formal providers and practitioners can facilitate SC as a critical coping strategy in sustaining the family care of people with dementia over the long term.
Highlights
Since AD represents the most common form of dementia in the U.K. accounting for some 62% of all cases (Age United Kingdom (UK), 2015), selecting carers from within this population group assisted the generalisability of the findings
Social coping (SC) was proactively advocated to less experienced carers by their peers and by knowledgeable voluntary sector staff
Those with experience perceived SC to be a vital means of eliciting valuable support, including emotional and practical support, to mediate care-based stress and prolong family care
Summary
2.1 | Coping ‘Coping’ is the process by which we try to manage stress (Lazarus & Folkman, 1984) via constant cognitive/behavioural actions. The definition of SC employed here: ‘seeking emotional and practical support from others’-reflects this study's consistent finding that in the context of family care SC often includes an emotional support component as a critical mediator of stress. This represents an important addition to seeking practical support. Phase 1 of this multi-phase Realist Evaluation (Pawson & Tilley, 1997) investigated ‘what works to support family carers’ despite the impact of stress This initial phase (Rapid Realist Review) (RRR) (Parkinson, Carr, Rushmer, & Abley, 2016) established ‘coping’ as a principal means by which carers could mediate stressors associated with caregiving (Appendix A). The paper focuses on the relationship of carers to formal service provision and how formal providers and practitioners* can facilitate SC to make family care of people with dementia sustainable
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