Dementia :: Caregivers and relative with dementia

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 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

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

“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

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.

Leave a Comment