Crawley, Sophie; (2024) Exploring the experience of peer and professional support on grief and burden in family carers of people living with dementia. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Background: Social support influences the grief and burden experienced by family carers of people living with dementia (PwD). The mechanisms and effects of different support domains remain unclear. // Aim: To develop a model of dementia grief and burden which demonstrates the influence of peer and formal support.// Design: Systematic review and mixed methods case study approach. The Caregiver Grief Scale, Zarit Burden Interview and validated measures of peer and formal support were completed at four-month intervals for 12-months or until the PwD died. Quantitative analyses included descriptive statistics and linear regression. A subset of carers participated in qualitative interviews, analysed using thematic analysis. Case study methodology and Joint Display tables integrated, analysed, and presented the quantitative and qualitative data. A model synthesising the findings was proposed.// Results: Carers (n=51) were female (66.7%) with a mean age of 60 (SD 12.8), caring for a parent (73%) with moderate to severe dementia (84%). High pre-death grief (62%) and burden (69%) was reported. Care not being integrated was associated with higher grief and burden. Female carers and larger social networks were associated with higher grief; lower levels of peer support and more negative peer support was associated with higher burden. Thematic analysis (n=8) identified positive experiences were related to support networks which were trusted and exhibited understanding, insight, collaborative partnership and effective communication. Case studies demonstrated similarities and differences between quantitative and qualitative evidence, and refined the relationships between grief, burden and support. The model proposes support domains act as mediators between background factors, care related stressors and grief or burden.// Conclusion: Grief and burden among carers of PwD is complex and integrated care and effective support mechanisms are paramount. This framework can guide healthcare professionals in identifying carers needing support and inform interventions by illustrating how support networks impact grief and burden.

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