Practical and emotional preparation for death: A mixed methods study investigating experiences of family carers of people with dementia

Abstract

Background When family carers are more prepared for the end of the life of a person they care for, they report improved bereavement outcomes. Few studies have explored how carers prepare for the death of a person with dementia. We aimed to explore how carers for people with all stages of dementia experience preparing for end of life care and death. Methods This was a mixed methods cross-sectional study. Family carers of people with dementia ( n = 150) completed a structured interview with validated scales, alongside questions about death preparedness and advance decisions. A sub-sample ( n = 16) completed qualitative interviews exploring their experiences of planning for end of life. We fitted logistic regression models to explore associations with preparedness, and thematically analysed qualitative data. Results We addressed practical and emotional preparation separately for 143 participants. Fifty seven percent of participants were very practically prepared for death, while only 29% were very emotionally prepared. Male carers were more likely than female carers to report being very emotionally and practically prepared. Higher engagement with healthcare professionals was associated with feeling very practically prepared; although we found that formal discussions of end of life care issues with healthcare professionals did not impact carers’ feelings of preparation. Higher levels of dementia severity and carer depression were associated with feeling very emotionally prepared. Three qualitative themes related to practical and emotional preparation were identified: (1) ambiguity and uncertainty; (2) support from the system; and (3) how death is perceived by the carer. Conclusions While most carers felt practically prepared for death, emotional preparation was much lower. Further research is needed to understand how engagement with healthcare professionals or other forms of social or emotional support could help carers, particularly female carers, to emotionally prepare for their relative’s death.