Caregivers Need Help in End-of-Life Care
Caregivers for Relatives With Dementia Need More Support Before Death of Loved One
Nov. 12, 2003 -- People who care for an elderly relative with
dementia may need more support during the final stages of their loved one's
life than after death.
A new study suggests that end-of-life care for people with
dementia is extremely stressful for caregivers, but caregivers show amazing
resilience after the death of their loved one. Researchers say the findings
show that new approaches in end-of-life care for dementia patients may be
needed that address the well-being and comfort of the caregiver as well as the
"One of the implications of this study is that it gives us
a greater understanding of the bereavement process," says Richard Schulz,
PhD, professor of psychiatry at the University of Pittsburgh School of
Medicine, in a news release. "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."
Caregiving Is a Full-time Job
In the study, which appears in the Nov. 13 issue of the New
England Journal of Medicine, researchers followed 217 family caregivers of
elderly people with dementia during the year before and after the patient's
Half of the caregivers reported that assisting their loved one
with their daily activities equated to more than a full-time job and took at
least 46 hours per week of their time.
More than half also said that they were "on duty" 24
hours a day, that their loved one had frequent pain, and that they had to quit
their jobs or cut back on their hours because of the demands of caregiving.
In addition, the caregivers in the study reported high levels
of depressive symptoms while providing end-of-life care to their dementia
family member, but they showed remarkable resilience after his or her
Within three months after the death of their loved one,
caregivers showed a drop in depressive symptoms and within one year they were
substantially lower than the levels they reported during end-of-life care.
Nearly three-fourths of the caregivers said the death was a
relief to them, and 90% said they believed the death came as a relief to the
Caregivers Need Support Before Death
Researchers say that the study shows that intervention and
support services for caregivers were needed most before the patient's
Schulz says nearly 2 million people in the U.S. have dementia,
and a family member at home cares for a significant number of these
"The services these people provide saves the health care
system billions of dollars a year while the caregivers themselves endure both
emotional and financial stress," says Schulz. "Because the number of
people in this situation will increase markedly over the next two decades, this
study should serve as a notice that we as a society may need to reassess how we
support family caregivers."