Caregiver coping mediates the relationship between caregivers’ understanding of dementia as terminal and their distress

Abstract

AbstractWe assessed which coping strategies (problem‐focused, emotion‐focused, dysfunctional) mediate the association between caregivers’ understanding of dementia as terminal and their distress. A total of 215 caregivers of community‐dwelling persons with severe dementia were surveyed every 4 months over 3 years. A generalized structural equation model was used to test mediation. Caregivers who correctly understood dementia as terminal and those unsure (vs incorrect), experienced more distress (correct: β [95% confidence interval (CI)]: 0.80 [0.00 to 1.60]; unsure: 0.95 [0.04 to 1.87]). Caregivers with correct understanding of dementia as terminal (vs incorrect) employed more dysfunctional (2.01 [0.60 to 3.42]) and problem‐focused coping strategies (2.56 [0.08 to 5.05]). Although dysfunctional and problem‐focused coping (associated with higher distress) mediated the positive association between caregivers’ understanding that dementia is terminal and their distress, emotion‐focused coping (associated with lower distress) did not offset this relationship. Results suggest that terminal illness disclosure to caregivers should be accompanied by interventions to promote emotion‐focused coping strategies.Highlights Caregivers who understood dementia as terminal experienced more distress. Dysfunctional and problem‐focused coping mediated the positive relationship between terminal illness understanding and caregiver distress. Emotion‐focused coping did not offset this relationship.