Concept of good death in people with dementia: a cross-sectional questionnaire survey of bereaved family members and medical professionals

Background There is limited quantitative evidence regarding good death for people with dementia. Aims To clarify which components of good death are important for people with dementia and to identify the component structure of good death through explanatory factor analysis. Design A web-based questionnaire survey was conducted where bereaved family members and professionals were asked to rate the importance of the 44 items identified from previous qualitative interviews as components of 'good death'. Setting/participants A total of 618 bereaved family members of people with dementia, and 206 physicians, nurses and care workers, each, involved in dementia care. Results A total of 1236 participant responses were analyzed. The exploratory factor analysis identified the following four factors as the concepts of good death for people with dementia: 'Comfort, security, and safety', 'Relationships', 'Independence', and 'Personhood care'. The top five items that bereaved families indicated as important were 'dying at peace' (97%), 'being free from pain and physical distress' (97%), 'being calm' (96%), 'being clean' (96%), and 'receiving necessary daily living assistance' (96%). The items with the lowest scores were 'being cared for by family' (53%), 'living with faith' (54%), and 'remaining in people's memory after one's death' (67%). We found only small differences between the opinions of the bereaved family members and medical professionals. Conclusions The components of good death which stakeholders consider important provide useful information for developing care implementation strategies for dying people with dementia.