Strategies that teach a
caregiver to manage a loved one’s illness also help In
coping with death
PITTSBURGH, August 2006 — An intervention aimed
at preventing depression and easing the burden of caring for a
relative with dementia also help to prevent complicated grief and
depression following the death of the loved one, according to a
University of Pittsburgh-led study.
The findings, which are
published in the August issue of the American Journal of Geriatric
Psychiatry, could help the millions of American families caring for
relatives with dementia. Approximately 4.5 million Americans with
Alzheimer’s disease live at home with 75 percent cared for by family
members.
The study, initially designed to establish
methods for preventing depression and increasing coping skills
during the caregiving process, sought to determine who among
caregivers were at risk for complicated grief and depression after
their care-recipients died. Surprisingly, the interventions aimed at
helping the caregiver cope while the care-recipient was living also
helped the caregiver cope with the recipient’s death, preventing
complicated grief and depression. According to principal
investigator and lead author Richard Schulz, Ph.D., professor of
psychiatry at the University of Pittsburgh, the finding was totally
unexpected.
Complicated grief most often occurs following the
death of someone in a very close and loving relationship. Key
features include a sense of disbelief regarding the death, anger and
bitterness over the death, recurrent pangs of painful emotions with
intense yearning and longing for the deceased, avoidance of
situations and activities that are reminders of the loss, and a
preoccupation with thoughts of the loved one, often including
distressing, intrusive thoughts related to the death.
Since it is a
newly characterized condition, not yet included in the American
Psychiatric Association’s Diagnostic and Statistical Manual, little
is known about how to treat and prevent complicated grief. In fact,
report the authors, the results of this study are the first to
demonstrate the effectiveness of such interventions -- which include
education, skills training and group support -- on preventing
complicated grief and depression after death.
Twenty percent of the caregivers in the study
experienced symptoms of complicated grief after their loved ones
died. Most of these did not receive the interventions, had
depressive symptoms and/or saw the caregiving process as positive,
usually because they derived a sense of purpose from the situation,
and were most likely to experience severe depression and complicated
grief post-death.
“Taking care of a relative with dementia can be
very stressful. Most caregivers respond well to their loved one’s
death, seeing it as a relief for the patient, which is why we
focused on helping during the caregiving process, rather than
after,” said Dr. Schulz, who is associate director of the University
of Pittsburgh Institute on Aging and director of the Center for
Social and Urban Research. “Given that in our previous studies we
have found that a large number, some 30 percent of caregivers, are
still at risk for severe depression after the death of their loved
one, it’s encouraging to know that these interventions can help both
before and after death.”
The Resources for Enhancing Alzheimer’s Caregiver
Health (REACH) study followed 1,222 caregivers and their loved ones
in Boston; Birmingham, Ala.; Memphis, Tenn.; Miami; Philadelphia;
and Palo Alto, Calif., between 1996 and 2000. During the course of
the study, 265 of the care-recipients died; 217 of their caregivers
were followed for this study.
According to the authors, the caregivers were
generally representative of individuals who provide in-home care for
relatives with Alzheimer’s disease. They were an average of 64 years
old; 84 percent were women; and nearly half were caring for a
spouse. Care-recipients were on average 81 years old and 54 percent
were men.
Caregivers were initially randomized to receive
either six months of an active intervention or a control
intervention, and were assessed at the onset of the study and at
six, 12 and 18 months. The caregivers whose loved ones died during
the study were assessed following the death, around 15 weeks
post-death, and at six, 12 and 18 months.
The researchers found that reducing caregiver
burden, treating depression prior to death and providing supportive
psychosocial or skills training caregiver interventions helped the
caregivers to better manage with their loved one’s deaths.
“Our findings show that caregiving is closely
intertwined with the bereavement experience that follows. Family
members caring for relatives with advanced disease would not only
benefit from traditional caregiving interventions designed to ease
the burden of care but also from pre-bereavement treatments that
would better prepare them for the impending death of their loved
one,” said Dr. Schulz.
Co-authors of the study include: Kathrin Boerner,
Ph.D., Lighthouse International, N.Y.; Katherine Shear, M.D.,
formerly of the University of Pittsburgh and now at the Columbia
School of Social Work, New York City; Song Zang, M.S., University of
Pittsburgh; and Laura N. Gitlin, Ph.D., Thomas Jefferson University,
Philadelphia.
The
study was supported by grants from the National Institute on Aging,
the National Institute of Nursing Research, the National Institute
of Mental Health and the National Heart, Lung and Blood Institute,
all of the National Institutes of Health.
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