Dementia is a progressive syndrome of decline in cognitive function. For 5 million Americans with dementia, therapies slow progression but do not reverse or cure the disease. Nursing home care is common; 67% of people dying from dementia die in this setting and families act as surrogates in major health care decisions. Shared decision-making about goals of care is the ethical standard for serious illness, yet families report poor quality communication, decision-making and palliative care. Compared with decisions about using or withholding a treatment, the goals of care approach encourages discussion and agreement on the primary goals of medical care, followed by treatment decisions designed to meet agreed upon goals. The study is a cluster randomized, controlled trial to test decision support for advanced dementia.
This research will provide the first empiric test of decision support for the goals of care framework in dementia care. It extends decision support research to surrogates, who make most decisions on behalf of patients with serious and incurable illness. To permit future dissemination, the intervention design is pragmatic and well integrated with nursing home interdisciplinary care.
Principal Investigator: Laura Hanson, M.D., M.P.H.
Funding: National Institute on Aging
Total Project Period: 04/15/11-03/31/16