The burden of caring for people with dementia at the end of life in nursing homes: a postdeath study among nursing staff

Aims To investigate how often nursing staff perceive caring for nursing home residents with dementia at the end of life as an emotional and/or physical burden, and to identify associated factors. Design Postdeath study conducted in 2010 in Flanders, Belgium. Nursing homes were selected through random clustersampling. Methods All residents who died with dementia in a three‐month period were identified, and a structured questionnaire was completed by the nurse mostly involved. Nursing staff were asked to indicate how they perceived burden of caregiving for this resident on 10‐point scale. Results Sixty‐nine out of 120 nursing homes (response rate 58%) participated in the study. In 37% and 32% of cases, respectively, the nursing staff reported that they perceived themselves as experiencing a high emotional and physical burden. In cases where the resident had capacity for medical decision making during the last week of life and where the nurse had spoken with a relative about wishes for medical end‐of‐life treatments, they were more likely to report an emotional burden. A physical burden was more likely to be reported where the resident had decubitus ulcers or had developed pneumonia. Conclusion In one‐third of cases, nursing staff experienced a high emotional and/or physical burden. While experiencing a physical burden seems to be related to the poorer clinical status of the resident, an emotional burden was more likely to be related to greater and closer contact with the resident or a relative and to the nurse being involved in the process of care and decision making in the last phase of life. Implications for practice This study highlights the need to support nursing home staff in providing compassionate end‐of‐life care for people with dementia and suggests that both the physical and emotional burdens in staff should be monitored regularly to achieve optimal working.