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.

Keywords:

• pre-death grief
• mental health
• personal strength
• family members

Funding

The author(s) reported there is no funding associated with the work featured in this article.

Data availability statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to containing information that could compromise the privacy of research participants.