Am Fam Physician. 2004;69(1):203
An estimated 4 million persons in the United States currently have Alzheimer's disease. This group and the general aging of the population place increased demands on the health care system. End-of-life care for patients with Alzheimer's disease and other progressive dementias has implications for patients, care-givers, and society. Families of patients at this stage of dementia must determine if they can provide care at home or if the patients should be cared for in an institution. Quality of care in patients with end-stage dementia is an important factor when deciding where these patients should receive care. If satisfactory care cannot be provided at home, patients with progressive dementia should receive end-of-life care in an institution. Currently, no studies have examined the quality of care for patients with progressive dementias in either setting. Volicer and associates evaluated end-of-life care of patients with dementia and looked at the various outcomes.
The authors conducted a retrospective survey of a national sample of family caregivers of patients with dementia who died within one year from the start of the study. The authors developed a Caregiver Assessment of End-of-Life in Dementia Questionnaire. Copies of the questionnaire were delivered to Alzheimer's Association chapters, Geriatric Research Education Clinical Centers, and the National Institutes of Health Alzheimer's Disease Centers, who agreed to participate in the study. These organizations distributed the questionnaire to caregivers of patients with dementia who had died within the previous year. The survey consisted of multiple components concerning end-of-life issues and gathered information about the extent of care required by the patient, the caregiver burden, an index of assistance, and the quality of care. Care settings were defined as those in which patients spent their last 90 days—at home, at home and an institution, or at an institution.
The patients with dementia who were cared for by a loved one were 81 years of age on average, 55 percent were men, with 42 percent completely dependent for all aspects of daily living. Patients who received hospice care and pain control stayed at home longer and were more likely to die at home. The main reason for increased caregiver burden and institutionalization was psychiatric symptoms. Patients who had advance directives had decreased hospital stays and an increased likelihood of dying in a nursing home. Patients who died at home had fewer symptoms and less discomfort than those who received care in other settings.
The authors conclude that quality end-of-life care can be provided at home for patients with progressive dementia. This care can be facilitated by hospice programs, effective pain control, and psychiatric care. The authors add that home care could reduce health care costs and promote care for these patients in the settings that most patients prefer.