Explaining caregiver burden in a large sample of UK dementia caregivers: The role of contextual factors, behavioural problems, psychological resilience, and anticipatory grief

Abstract

Objectives Dementia caregiver burden is a significant public health concern, affecting both the wellbeing of caregivers and their care-recipients. This study investigated a range of variables associated with caregiver burden in a large sample of UK dementia caregivers. Clinical characteristics and novel psychological constructs were used – including anticipatory grief and psychological resilience. Anticipatory grief refers to the process of experiencing loss prior to the death of a significant person. Method Caregivers of persons with dementia (N = 530) completed a survey obtaining the Zarit-Burden Interview (ZBI-SF) and other psychological and demographic/caregiving-related factors. Results Findings illustrate that 71% of the sample experienced high levels of caregiver burden and around 95% met the criteria for clinically significant levels of burden. A regression model explained 49% of the variance in subjective caregiver burden; contextual factors (care-recipients living situation, frequency of caregiving), behavioural challenges in the care-recipient (memory-related problem behaviours), caregiver psychological resilience and caregiver anticipatory grief (heartfelt long & sadness, worry & felt isolation) were all significant variables. Caregiver anticipatory grief, followed by psychological resilience, had the strongest association with burden Conclusion Caregiver anticipatory grief and psychological resilience, have a significant interaction with the clinical presentation of the dementia sufferer in explaining subjective caregiver burden. More grief and resilience-focused interventions targeting both the practical and emotional challenges are imperative to reduce burden and thus to ensure caregiver wellbeing.