Posted on August 24, 2004 at 3:00 p.m.

BIRMINGHAM, AL — Caregivers 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, according to results of a multi-site study in this week’s Journal of the American Medical Association (JAMA).

UAB (University of Alabama at Birmingham) was one of the sites in the study, 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, including the conditions that led to placement, the nature of contact between them and their relatives after institutionalization and the impact of these factors on health outcomes among caregivers following the placement.

Results from the four-year study of 1,222 caregiver-patient pairs found that 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 they were when they were in-home caregivers. These findings stand in sharp contrast to earlier findings reported by some of the same authors showing that death of a loved one after caregiving results in improvement in depression.

“Unlike the sense of closure and relief reported by caregivers after the death of a loved one with dementia, caregivers who have placed their loved ones in an institution continue to experience distress and depression.” said Alan Stevens, Ph.D., associate professor of gerontology and geriatric medicine at UAB.

Stevens said caregivers often feel distressed over the suffering and decline of their loved ones, as well as having to face new challenges such as frequent trips to the long-term care facility, reduced control over the care provided their relative, and taking on responsibilities such as coordinating and monitoring care.

In addition, 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, says said Dr. Richard Schulz, Ph.D., professor of psychiatry and Director of the Center for Social and Urban Research at the University of Pittsburgh School of Medicine and lead author on the paper. The University of Pittsburgh was the coordinating site for the study.

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.

“This study shows that we need to help caregivers who place their relatives. 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.” Schulz said.

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. The sample was 56 percent white, 24.2 percent African-American and 19 percent Hispanic, and were primarily spouses or children.

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, and caregivers who reported that their caregiving experience made them feel important were less likely to place their relative in a facility.

Additional authors include Steven H. Belle, Ph.D., Kathleen McGinnis, M.S. and Song Zhang, M.S., University of Pittsburgh; Sara J. Czaja, Ph.D., University of Miami and Alan Stevens, Ph.D., University of Alabama at Birmingham.

The study was funded by the National Institute on Aging and the National Institute for Nursing Research.