Study: Caregivers of Relatives With Dementia Need Support During Final Stages

Most caregivers of relatives with dementia need more support before the death of a loved one than afterwards, according to a study reported in the November 13 issue of the New England Journal of Medicine.

Study author Richard Schulz, a professor of psychiatry at the University of Pittsburgh School of Medicine, said caregivers of family members with end-of-life dementia endure a long and stressful period prior to death, but after death express considerable relief and remarkable emotional resiliency.

Schulz and his colleagues followed 217 family caregivers of persons with dementia during the year before the patient's death and a year afterwards.

Half of the caregivers reported spending at least 46 hours per week assisting patients with activities of daily living that ranged from preparing their meals to bathing and dressing them.

More than half of the caregivers felt they were on duty 24 hours a day. They were under stress because they felt the patient suffered frequent pain, and because they had to end or reduce their own employment to meet the demands of taking care of their loved one.

"One of the implications of this study is that it gives us a greater understanding of the bereavement process," said 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."

Although caregivers exhibited high levels of depressive symptoms while caring for a relative with dementia, they had clinically lower depression within three months and significant declines in depression a year after their relative's death. Additionally, 72 percent of caregivers 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.

"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 Schulz. "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."

University of Pittsburgh Medical Center