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Keywords

dementia, hospice care, nursing homes, palliative care

 

Authors

  1. Akunor, Harriet S. MD, MPH
  2. McCarthy, Ellen P. PhD, MPH
  3. Hendricksen, Meghan MPH, MS
  4. Roach, Ashley PhD, RN
  5. Hendrix Rogers, Anita PhD, RN
  6. Mitchell, Susan L. MD, MPH
  7. Lopez, Ruth Palan PhD, GNP-BC, FGSA, FAAN

Abstract

Nursing homes (NHs) are an important site of death for residents with advanced dementia. Few studies have explored the experiences of NH staff about providing end-of-life care for residents with advanced dementia. This study aimed to describe NH staff perceptions on where end-of-life care should be delivered, the role of Medicare hospice care, and their experiences providing end-of-life care to residents with advanced dementia. Data from the Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life study were used to explore the study objectives. Semistructured interviews with 158 NH staff working in 13 NHs across the United States were analyzed. Most NH staff endorsed the NH as a better site of death for residents with advanced dementia compared with a hospital. They expressed mixed perceptions about hospice care. However, regardless of their role, the staff expressed experiencing difficult emotions while providing end-of-life care to residents with dementia because of the close attachments they had formed with them and bearing witness to their decline. The findings show that most NH staff have strong emotional attachments to their dying residents with dementia and prefer to care for them at the NH rather than transfer them to the hospital.