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

• Published in: International journal of geriatric psychiatry Vol. 38; no. 3; pp. e5867 - n/a
• Main Authors: Moore, Kirsten J., Crawley, Sophie, Fisher, Emily, Cooper, Claudia, Vickerstaff, Victoria, Sampson, Elizabeth L.
• Format: Journal Article
• Language: English
• Published: England Wiley Subscription Services, Inc 01.03.2023
• Subjects: Adaptation, Psychological; Caregivers - psychology; carers; Death; Dementia; Dementia - psychology; Dementia - therapy; Dementia disorders; Emotions; Female; Geriatric psychiatry; Grief; grieving; Humans; Male; Mixed methods research; social support; Surveys and Questionnaires; social support; grieving; dementia; carers
• ISSN: 0885-6230; 1099-1166
• DOI: 10.1002/gps.5867

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). Key points Pre‐death grief is common amongst carers of people living with dementia, however, little is known about how they manage and process their grief. Most carers in our study were experiencing grief and used multiple strategies for managing their grief. Our findings provide support that in the context of a progressive, chronic condition, carers can find the carer experience rewarding and lead to personal growth, but some will struggle and find their situation futile. Carers could readily identify supports and services they found helpful, suggesting that holistic, individualised assessment of the carer's practical and emotional needs could identify key supports that would enable them to feel supported and have the time to consider and process difficult emotions. Current bereavement models may underestimate the level of formal counselling and support these carers need. While family and social networks were important, many did not want to burden family and friends and felt that their network could not fully understand their experiences. Formal supports offered an independent avenue for support that was not bound within existing complex relationships. However, current services appear to be under‐resourced to meet growing demand.