According to lead author Richard Schulz, Ph.D., professor of psychiatry at the University of Pittsburgh School of Medicine, family caregivers of patients with end-of-life dementia endure a protracted and stressful period of caregiving prior to death, but after death express considerable relief and remarkable emotional resiliency.
"One of the implications of this study is that it gives us a greater understanding of the bereavement process," said Dr. Schulz. "A person's reaction to death is altered by the context in which the death occurs. It is possible that caregivers who know their loved one is on a trajectory towards death grieve for that person before death, and that may be the time when they need the most support."
At the same time, the study found those caregivers may need less support after the actual death. The research showed that while caregivers exhibited high levels of depressive symptoms while caring for the relative with dementia, after the death, they had clinically lower depression within three months and significant declines in depression after a year. In addition, the vast majority of caregivers, 72 percent, reported that the death of their loved one came as a relief to them because they believed the death was a relief to the patient.
Dr. Schulz and his colleagues followed 217 family caregivers of persons with dementia during the year before the patient's death, then continued to follow them for a year afterwards. Half of the caregivers reported spending at least 46 hours per week - equivalent to a full-time job - assisting patients with activities of daily living that ranged from preparing their meals to bathing and dressing them. In addition, more than half of the caregivers felt they were "on duty" 24 hours a day and were under stress because they felt the patient suffered with frequent pain and because they had to end or reduce their own employment to meet the demands of taking care of their loved one.
"This study gives us insight into the experiences of many of the six million people who provide long-term, unpaid care to disabled elderly persons in their families," said Dr. Schulz, who also is director of the University Center for Social and Urban Research and associate director of the University of Pittsburgh's Institute on Aging. "At this moment, more than two million people in the United States have dementia, and a significant number of those patients are cared for by a family member at home. The service these people provide saves the health care system billions of dollars a year, while the caregivers themselves endure both emotional and financial stress. Because the number of people in this situation will increase markedly over the next two decades, this study should serve as notice that we as a society may need to reassess how we support family caregivers."
To further interpret their findings, Dr. Schulz and his colleagues examined the changes in the depressive symptoms of 180 caregivers in their research group whose relatives were institutionalized.
"Our results were further strengthened when we found that caregivers of patients who were institutionalized did not experience the improvement in depression that we observed among those whose relatives had died," said Dr. Schulz. "This shows that getting over depression related to caregiving is less about being relieved of the burden of in-home care and more about the process of coming to terms with the loss."
The findings are from the Resources for Enhancing Alzheimer's Caregiver Health (REACH) study, a five-year, multi-site initiative to research interventions to support family caregivers, and was funded by grants from the National Institute on Aging and the National Institute for Nursing Research.
Other study authors are Aaron B. Mendelsohn, Ph.D., Song Zhang, M.S. and Steven H. Belle, Ph.D., all of the University of Pittsburgh; William E. Haley, Ph.D., of the University of South Florida; Diane Mahoney, Ph.D., of the Hebrew Rehabilitation Center for Aged in Boston; Rebecca S. Allen, Ph.D., of the University of Alabama at Tuscaloosa; and Larry Thompson, Ph.D., of the Veterans Affairs Palo Alto Health Care System, Stanford University.