Depressed caregivers of relatives with dementia feel better after relative dies
Wednesday, Nov. 12, 2003
Caregiver depression often eased by patient's death: study
By OLIVER MOORE
Globe and Mail Update
People caring for dying relatives with dementia often feel a sense of relief
when the patient finally dies and can quickly show markedly lower levels of
depression, say scientists who tracked more than 200 caregivers as they
handled the death of a family member.
The findings sparked speculation that it may, in fact, be better for
supporters to intervene with caregivers before their charge has actually
died, says lead author Richard Schulz, a professor of psychiatry at the
University of Pittsburgh.
“One of the implications of this study is that it gives us a greater
understanding of the bereavement process,” Dr. Schulz said.
“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.”
Dr. Schulz, who also is associate director of his school's Institute on
Aging, notes that the health care system is greatly helped by the thousands
of hours of care provided at home by family members, but warns that the
numbers of elderly with dementia are going to explode over the next few
“The caregivers themselves endure both emotional and financial stress ...
this study should serve as notice that we as a society may need to reassess
how we support family caregivers.”
Dr. Schulz and his team tracked 217 family caregivers for one year prior to
their charge's death and for one year after. Roughly half of the study group
were people who spent more time caring for their relative than the typical
person spends at a job. Responsible for tasks ranging from meal-preparation
to bathing to dressing, more than half of the caregivers said they felt that
they were “on duty” 24 hours a day.
According to their research – which appeared Wednesday in a special issue of
the New England Journal of Medicine – these caregivers showed marked
symptoms of depression while caring for the relative with dementia. They
were found to be under stress in part because many curtailed their
employment to provide care, but in many cases also because they felt their
patient was suffering.
When checked three months after the death of the patient these symptoms of
depression were “clinically lower.” At the end of a full year the symptoms
were judged to have showed “significant declines.”
These reduced levels of depression were not as apparent when the patient is
removed to an institution, rather than dying, the researchers say, which
suggests that the sense of relief is not necessarily tied to a desire simply
to have the person off their hands.
According to Dr. Schulz, the findings suggest that people are depressed and
anxious because their loved one is suffering and there is nothing that seems
capable of relieving their torment. Death is seen as a relief to the loved
one, which consequently bring relief to the care-giver.
“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,” he said. “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.”