Exploring how family carers of a person with dementia manage pre‐death grief: a mixed methods study

Objectives

Many family carers of a person with dementia experience pre-death grief. We aimed to identify strategies that help carers manage pre-death grief. We hypothesised that emotion and problem focussed styles would be associated with lower, and dysfunctional coping with higher grief intensity.

Methods

Mixed methods observational study using structured and semi-structured interviews with 150 family carers of people with dementia living at home or in a care home. Most participants were female (77%), caring for a parent (48%) or partner/spouse (47%) with mild (25%), moderate (43%) or severe (32%) dementia. They completed the Marwit-Meuser Caregiver Grief Inventory Short Form and the Brief Coping Orientation to Problems Experienced (Brief-COPE) questionnaire. We asked carers to identify strategies used for managing grief. We recorded field notes for 150 interviews and audio-recorded additional interviews with a sub-sample of 16 participants.

Results

Correlations indicated that emotion-oriented coping was associated with lower grief (R = −0.341), and dysfunctional coping with higher grief (R = 0.435), with a small association with problem-focused strategies (R = −0.109), partly supporting our hypothesis. Our qualitative themes broadly match the three Brief-COPE styles. Unhelpful strategies of denial and avoidance align with dysfunctional coping strategies. Psychological strategies (including acceptance and humour) and seeking support were consistent with emotion-focused strategies, but we did not identify a theme relating to problem-focused strategies.

Conclusion

Most carers identified multiple strategies for processing grief. Carers could readily identify supports and services that they found helpful for managing pre-death grief, yet current services appear under-resourced to meet growing demand. (ClinicalTrials.gov ID: NCT03332979).