Study Shows Placing Relative with Dementia into Long-Term Care Facility Does Little to Ease the Emotional Burden of Caregivers
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 of 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
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
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 wellbeing by helping them with their emotional
distress, and by helping them prepare for and deal with these often
difficult transitions,” Dr. Grady added.