Exploring how family carers of a person with dementia manage pre-death grief: A mixed methods study (Sampson, 2023)

Moore K.J., Crawley S., Fisher E., Cooper C., Vickerstaff V., Sampson E.L.

International Journal of Geriatric Psychiatry 2023;38(3): e5867.

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.

Method(s): 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.

Result(s): 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(s): 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).Copyright © 2023 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.