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2005 Grant - Mitchell
Improving Hospice Care in Advanced Dementia
Susan L. Mitchell, M.D., M.P.H.
Harvard Medical School and
Hebrew Rehabilitation Center for Aged
2005 Investigator-Initiated Research Grant
In recent years, improvements in hospice services have improved end-of-life care, alleviated pain, and resulted in fewer deaths in a hospital setting. Unfortunately, very few people with Alzheimer's disease or other disorders that cause dementia are referred for hospice care either at home or in a nursing home. And a growing body of evidence suggests that end-of-life care is not optimal for most people with dementia.
Susan L. Mitchell, M.D., M.P.H., and colleagues are conducting research on the current quality and timing of hospice care for people with dementia. The investigators will analyze data from a repository of 150,000 surveys collected nationwide by the National Hospice and Palliative Care Organization from family members of people who received hospice care. The survey asks questions regarding (1) provision of physical comfort and emotional support, (2) promotion of shared decision-making, (3) treatment of dying individual with respect, (4) attention to needs of family and (5) coordination of care.
The researchers will use the survey results to (1) determine the quality and timing of care for people with dementia compared with people who had no cognitive impairment, (2) examine how timing of hospice care—perceived as too late or about right—affects views on quality of care and (3) assess how the number of people with dementia served by a single hospice service affects the quality of care provided. The outcome of this work should lay a foundation for further research to improve end-of-life care for people with Alzheimer's disease and related disorders.