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A new study shows that caregivers of dementia patients who must make the
difficult decision to place their relatives into institutionalized care
get no relief from depression and anxiety, and in fact suffer additional
emotional trauma following their decision. The study, funded by the National
Institute for Nursing Research and the National
Institute on Aging, part of the National Institutes of Health, appears
in the August 25, 2004 issue of the Journal of the American Medical
Association (JAMA).
The four year investigation, which was coordinated by the University
of Pittsburgh School of Medicine and led by Richard Schulz, Ph.D., Director
of the Center for Social and Urban Research at Pitt, determined that
clinical intervention may greatly benefit caregivers by helping them
to prepare for the placement of their relatives and by treating their
depression and anxiety during the placement process.
This is the first study to provide a comprehensive analysis of the
emotional turmoil caregivers experience during the transition of their
loved one from home to a long-term care facility, according to Dr. Schulz.
The investigators looked at a number of factors including the conditions
that led to placement, the nature of contact between the caregivers
and their relatives after institutionalization, and the impact of these
factors on health outcomes among caregivers following the placement.
Participants of the study were recruited from six U.S. sites and included
1,222 caregiver-patient pairs. For the 180 caregivers who had to turn
over care of their loved one to an institution symptoms of depression
and anxiety stayed as high as when they were in-home caregivers. These
findings stand in sharp contrast to earlier findings reported by Schulz
and his group showing that death of a loved one after care giving results
in improvement in depression.
"Caregivers who place their loved ones in an institution do not
get the sense of relief or experience the closure observed among caregivers
whose loved ones pass away," said Dr. Schulz. "They continue
to feel distressed because of the suffering and decline of their loved
one as well as having to face new challenges such as frequent trips
to the long-term facility, reduced control over the care provided their
relative, and taking on responsibilities such as coordinating and monitoring
care," he added.
According to Dr. Schulz, "cognitive and functional declines are
common in patients who go into long-term care, and caregivers often
blame themselves for this decline and question their decision to institutionalize
their loved one."
Caregivers who were married to the patient and those who visited most
frequently had the most difficult transition. Spouses reported higher
levels of depression both before and after placement and more anxiety
after placement than their non-spouse counterparts. Almost half of the
caregivers in the study visited the patient daily and continued to provide
some form of physical care during their visits.
The study recommends that spouses, caregivers who remain actively involved
with the care recipient, caregivers who have high levels of depression,
and those who lack adequate support from others should receive interventions.
"We need to help caregivers who place their relatives, said Dr.
Schulz. "We need to treat their emotional distress, educate them
about the nature of long-term care facilities and their impact on patient
functioning, engage them in end-of-life planning, and prepare them for
the eventual death of their loved one," he added.
The patients in this study were all diagnosed with moderate to severe
Alzheimer's disease and had a median age of 80 years. Caregivers were
mostly female with a median age of 63 years. The sample was 56 percent
white, 24.2 percent African American, and 19 percent Hispanic; most
were spouses or children.
The researchers found that African American and Hispanic caregivers
were less likely to place their relative in a facility than whites;
caregivers reporting greater burden were more likely to place their
loved one in long-term care; caregivers who reported that their care
giving experience made them feel useful and important were less likely
to place their relative in a facility.
"The findings of Dr. Schulz and his associates are particularly
relevant as Americans live longer and the number of families faced with
placing their loved ones into institutional care grows," said NINR
Director Patricia A. Grady, PhD, RN, FAAN. "Knowing that these
caregivers are vulnerable to ongoing depression and anxiety following
such a placement, health professionals can make a difference in these
people's well-being by helping them with their emotional distress, and
by helping them prepare for and deal with these often difficult transitions,"
Dr. Grady added.
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