A Scoping Review of Definitions and Measures on Resilience in Informal Caregivers of People Living with Dementia

Background and Purpose: Caring for people living with dementia (PWD) is a challenging and frequently all-consuming task. This responsibility can negatively affect the physical and psychosocial health of informal caregivers. There is evidence that some caregivers are able to succeed in navigating challenging situations with PWD, delay institutionalization of their care recipients, and maintain positive function, even benefit from their caregiving roles. Such caregivers can be viewed as 'resilient'. To better support caregivers and their care recipients, it is crucial to understand the nature of resilience in caregivers of PWD and develop ways to support and enhance it. However, there are no consistent definitions or measures of resilience for caregivers of PWD, which hinders the development of resilience-supporting interventions. Therefore, we conducted a scoping review to examine current definitions and measures of resilience in caregivers of PWD, with the aim of identifying gaps and potential ways in operationalizing resilience for caregivers of PWD.

Methods:  Peer–reviewed articles published in English between January 1990 and March 2018 were retrieved from 6 electronic databases – PubMed, CINAHL, PsycINFO, Social Services Abstracts, Social Work Abstracts, and EMBASE – an reviewed based on predefined inclusion criteria. Key themes, study designs, participant characteristics, definitions of resilience, and characteristics of resilience measures were used as the data extraction framework.

Results: The review identified 20 studies that met inclusion criteria. Eighteen studies clearly defined resilience; 13 studies developed or used a resilience measure for caregivers of PWD; total 8 measures of resilience were identified. Reviewed articles defined resilience as either an individual trait or characteristic, positive psychological outcomes of caregiving, or a process that individuals try to recover, resist or adapt to difficult situations. With more research conducted from the perspective of dementia caregivers, there is a growing understanding that resilience should be context- and domain- specific along the dynamic caregiving process for caregivers of PWD. Most measures (n=7) were based on individuals’ subjective perceptions of their ability to recover from life stressors, or individual psychological outcomes. Only one measure is a self-report questionnaire that measures individuals’ positive behaviors when facing difficulties, however, this measure was developed for situations other than dementia caregiving. Only 2 resilience measures were developed specifically for caregivers of PWD, while they were focusing on caregivers’ individual traits or psychological outcomes. Therefore, there is no measure to capture how caregivers manage to recover from, or thrive in, specific challenging situation when caring for PWD.

Conclusions and Implications: There is an emerging view that defines resilience in caregivers of PWD as context- and domain- specific capacities along the dynamic process of caregiving, while currently there is no such resilience measure. Future research should further explore how to measure caregivers’ capacities to address specific challenging situations in dementia caregiving process. A behavior-based resilience measure for caregivers of PWD is proposed. This important step might advance development of interventions to cultivate and sustain resilience in caregivers of PWD during the caregiving trajectory.