Defining a good death for people with dementia: A scoping review

Aim: End-of-life care for people with dementia is becoming increasingly important as the global population ages. However, there is no agreed definition of a good death for people with dementia. The current review examined previous literature to establish the current state of knowledge on this issue. Methods: We conducted a scoping review using a standard methodological framework. Relevant studies were identified from four databases. Studies were included if they were in English, discussed palliative or end-of-life care for dementia, and defined or explained a good death. The definitions or explanations of a good death were categorized into subthemes, and grouped into broader themes. Results: We identified 11 articles discussing or explaining a good death in dementia, which were published between 2009 and 2017. Most of these studies drew on the views of healthcare professionals and/or family members of people with dementia, and only one considered the views of people with dementia themselves. Ten themes were identified, including pain-free status, peaceful/comfort, dignity, family presence, surrounded by familiar things and people, person-centered communication, spirituality, life completion, treatment preferences, and other. Conclusions: The characteristics of a good death in dementia showed similarities with those identified more generally. However, there were some themes that were specific to end-of-life care in dementia, notably “surrounded by familiar things and people” and “person-centered communication”. To obtain a fuller picture of the nature of a good death in dementia, researchers need to examine the views of people living with dementia.