Interventions to build resilience in family caregivers of people living with dementia: a comprehensive systematic review.

Abstract

Recent studies have indicated that family caregivers of people with dementia have higher rates of depression, anxiety and hopelessness, as well as higher levels of burden, stress and distress. Not all caregivers, however, succumb to the negative effects of caring. Caregivers who are able to recover from, resist or adapt to the physical and psychological demands of caring can be considered "resilient". The objective of this review was to examine the existing evidence regarding interventions for building resilience in family caregivers of people living with dementia. This review considered studies that included family caregivers of people with dementia. Studies investigating interventions to build resilience in family caregivers were considered by the review. For qualitative studies, the phenomena of interest were family caregivers' experiences of the interventions including factors affecting implementation and their subjective experience of outcomes. Studies conducted in any cultural or geographical context and any settings including participants' homes in the community, residential aged care or hospital, medical or allied health practice were considered for inclusion. Quantitative studies incorporating experimental and descriptive study designs and qualitative studies, including, but not limited to, phenomenology, grounded theory, ethnography, action research and feminist research were considered for inclusion. Quantitative studies were included that contained either objective or subjective outcome measures (or a combination of both). In cases in which proxy measures of resilience were used, only those papers that explicitly related the aims of the intervention and the measurement of outcomes to resilience itself were considered for inclusion. Proxies could include, but were not limited to, self-efficacy, locus of control, perceived burden, psychological wellbeing, strength, coping, positive adjustment and resourcefulness. Qualitative studies were similarly considered for inclusion if they explicitly related the aims of the intervention to resilience. Eleven electronic databases were searched for research studies published in English in or after 1990. Quantitative and qualitative studies selected for retrieval were assessed by two independent reviewers for methodological validity using standardized critical appraisal instruments from the Joanna Briggs Institute Meta-Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI) and Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI). Quantitative and qualitative data were extracted from publications included in the review using the standardized data extraction tools from JBI-MAStARI and JBI-QARI. It was not possible to pool quantitative findings for statistical meta-analysis using JBI-MAStARI. Qualitative research findings were too limited to be pooled using the JBI-QARI. The findings are presented in narrative form. The review included three publications reporting one quantitative intervention study and one mixed-method intervention study. There was a lack of available studies and, of the two intervention studies that were identified, neither found any statistically significant change in quantitative measures of resilience. Qualitative data suggested positive impacts of a poetry writing intervention and a positive experience of the intervention. The studies differed in both the nature of the intervention and the way resilience was conceptualized and operationalized. Consequently, it was not possible to offer any recommendations for practice. Implications for research relate to the development of a more comprehensive theory of resilience in family caregivers that can be used to develop and rigorously evaluate reliable and valid measures of resilience in line with that theory. Further, well-designed, sufficiently powered intervention studies informed by theory are needed.