Caring for individuals with end-stage dementia at the end of life

Abstract

Little is known about the beliefs and practices of social workers who work with individuals with end-stage dementia. With more individuals reaching the end stages of the disease, it is crucial to determine how professionals view their work with end-stage dementia patients and their caregivers. During this ethnographic study, the beliefs and practices about dementia care of 13 hospice social workers from the United States were documented for 10 months through interviews, in-field observations, and chart reviews. It was determined that although hospice social workers use a wealth of practice skills with individuals with end-stage dementia and their caregivers and strive to enhance the personhood of the patients, they also possess a neutral to negative view of practice with this population and see their role as limited and ambiguous compared to how they view their work with cognitively intact patients. This study has implications for how hospice social workers and other healthcare professionals provide end-of-life care for patients and families who are dealing with dementia and the types of training that should be implemented in hospice agencies to strengthen end-stage dementia care.