Factors of Resilience in Informal Caregivers of People with Dementia from Integrative International Data Analysis

Abstract

Background/Aims: Although caring for a person with dementia can be stressful, some caregivers appear to experience few negative consequences to their well-being. This study aimed to examine what proportion of caregivers demonstrates resilience under different challenging circumstances and to identify factors related to their resilience. Methods: Baseline data from 4 studies from the Netherlands and UK among informal caregivers of people with dementia were harmonized and integrated. Caregiver resilience was defined as high levels of psychological well-being despite different types of high caregiving demands. Multivariate regression analyses identified factors significantly related to caregiver resilience. Results: The integrated data set included 15 harmonized variables with data from 1,048 caregivers facing a high care demand. The prevalence of resilience varied between 35 and 43%, depending on the demand for high care. Being a male caregiver, caring for a female, living apart from your relative, and low caregiver burden were positively related to caregiver resilience. Conclusion: Caregivers have the capacity to demonstrate resilience despite significant challenges. This study demonstrates how harmonization of data from multiple existing studies can be used to increase power and explore the consistency of findings. This contributes to a better understanding of which factors are likely to facilitate caregiver resilience and offers insights for developing services.

The influence of day care centres for people with dementia on family caregivers: an integrative review of the literature

“…A review study from 2016 shows that being a spouse in itself is not a negatively associated factor linked to resilience, as opposed to the cohabiting or higher care burden factors, both of which were negatively associated with resilience (p value ˂ 0.01 ) (Joling et al, 2016). All the spouses in our study, and only a small number of the children (six in the survey) lived with the person with dementia.…”

“…The concept of resilience is derived from developmental psychology, where the term describes children who perform well despite difficult psychological adversities during their childhood. Resilience can be understood as positive experiences and experiences in the face of adversity or risk, and focuses on strengths rather than weaknesses (Joling et al, 2016). Resilience is regarded as positive or successful adaptation, competence and functioning in the face of stressful experiences (Egeland, Carlson & Sroufe, 1993;Egeland & Abery, 1991).…”

“…This recognizes that caregivers will draw on individual resources, but also interact with their environment by drawing on community and societal resources which may facilitate or hinder resilience (Joling et al, 2016). Resilience among family caregivers of people with dementia is often associated with the experience of stress and burden versus the degree of impairment in personal activities of daily living (PADL)/instrumental activities of daily living (IADL) and challenging behaviour from the person with dementia.…”

“…These high demands relate to a serious degree of dementia and/or behavioural problems, providing a significant amount of care and having limited opportunities for attending to their own basic needs (Joling et al, 2016). In family caregivers of people with dementia, resilience is found to be inversely related to depression, anxiety, psychoactive drug use and perceived burden, and positively related to health and well-being.…”

“…This may mean that despite experiencing the burden of care, the burden for daughters is not generalized to what they feel about themselves, suggesting it is not as salient for their perceptions of self and identity (Chappell et al, 2015). Also in resilience research, being a male caregiver has a positive effect on the experience of the burden of care (except for in cases of severe dementia) (Joling et al, 2016), but our study showed no clear correlations here, either in the survey or in the qualitative studies. In study 4, spouses of both sexes described emotional and practical challenges, and there were no particular gender disparities in relation to how they coped with the situation.…”