‘In solitary confinement’: Planning end-of-life well-being with people with advanced dementia, their family and professional carers

Abstract

This study explored the opinions of people with advanced dementia, their family and professional carers, on promoting well-being during the last months of life and on good terminal care. It asked what wishes had already been expressed by or discussed with this group and examined the extent of communication between family and staff. Observations took place in hospital wards, residential and nursing homes and a hospice. Twelve patients (10 with advanced dementia) were interviewed, with one family carer and one professional carer each. Despite their advanced dementia, people in this study appeared to have, and were able to express, views on the end-of-life care. Some views may even have evolved since diagnosis, leading to a greater acceptance of death. This may suggest a general underestimation of the abilities of people with dementia to process abstract concepts and to discuss emotionally charged topics. It also highlighted a lack of communication both with patients about advanced directives and between family and staff about patients' wishes that had already been expressed. The study has significance for the way professionals perceive and react to people with advanced dementia, their end-of-life well-being and preparations for a death which would accord with their wishes.