Race, Relationship Matter in Helping Dementia Caregivers, According to UA/UAB Study

TUSCALOOSA, Ala. – Individual characteristics of caregivers, including race and relationships, should be considered while helping them manage stress and burden, according to a soon-to-be published study from researchers at The University of Alabama and The University of Alabama at Birmingham.

The study, headed by Dr. Louis Burgio, professor of psychology and co-director of UA’s Center for Mental Health and Aging, and Dr. Alan Stevens, associate professor of gerontology and geriatric medicine at UAB, found significant differences in the preferences of black and white caregivers of dementia patients, in relation to the type of assistance they prefer.

“Whites responded best to minimal support conditions, such as informative mail-outs and periodic phone calls, while blacks responded best to in-home skills training and formal workshops,” Burgio said. He said the relationship of the caregivers also mattered. “We found that husbands responded best to minimal support while the wives responded best to skills training,” he said.

Results from the study will be published in the August issue of “The Gerontologist,” the premier scientific journal dealing with aging issues. The study tracked two types of caregiver interventions and found that both eased the pressures facing caregivers.

One of the interventions was an intensive skills training program, involving a group workshop and 16 in-home treatment sessions. Trained therapists taught caregivers how to handle problem behaviors from the patient and taught caregivers problem solving skills. The second intervention provided caregivers with written materials to help them identify problem areas and provided periodic “check-in” phone calls.

“We found that both interventions helped reduce the number of problem behaviors,” Stevens said. “Additionally, the caregivers reported they were better able to handle the burden associated with problem behaviors that did arise.”
Alabama was one of six intervention sites in the nation selected for REACH, a six-year study by the National Institute of Nursing Research (NINR) and the National Institute of Aging (NIA), two components of the National Institutes of Health. REACH, or Resources for Enhancing Alzheimer Caregivers’ Health, was funded to develop and test new ways for dementia caregivers to manage the stress and burden of helping their loved ones.

“The responsibilities and burdens of caregivers of patients with Alzheimer’s disease create a demand for research such as this,” said Dr. Patricia Grady, director of NINR. “It is important for health care providers to identify ethnically and culturally sensitive interventions to achieve the best results, and this study is an important step in that direction.”

In Alabama, approximately 59,000 individuals suffer from Alzheimer’s disease and other dementia disorders, with three out of four of these people cared for at home, usually by family members. Forty percent of Alzheimer’s caregivers die from stress-related disorders before the Alzheimer’s patient.

“What REACH is telling us is that we can help dementia caregivers, but we need to go to the next level,” Burgio said. “Now that we know what works, we need to modify the interventions based on the caregivers’ personal characteristics. We have to tailor the interventions to the individual caregivers.”

The study, co-authored by UAB’s Delois Guy and Dr. David Roth and the University of South Florida’s Dr. William Haley, suggests the racial differences might be related to two factors. It is possible that black caregivers responded better to the therapeutic relationship that develops during one-on-one interactions in the home, Burgio said. Previous studies show, when given the option, blacks usually choose more active medical and psychosocial interventions. This is likely related to the long history of blacks being “shortchanged” by the health delivery systems, he said.

A second study, also funded by NINR and the NIA, is now underway. UA’s Center for Mental Health and Aging and department of psychology were earlier awarded $1.2 million to participate in REACH II. This study, in which Burgio is the principal investigator, is a collaborative effort with the Center for Aging at UAB, with Stevens serving as the principal investigator of the UAB subcontract. Co-investigators in the Alabama portion of the study include Dr. Michael Hardin, a statistician at UA and Dr. Linda Davis, a nurse researcher at UAB.

Researchers are now recruiting black and white caregivers from the Tuscaloosa and Birmingham areas. Each participant is assigned, by chance, to one of two groups. Each group will be offered similar information but at different times and delivered in different ways. One group will receive their information during home visits by a member of the research team who will also teach the caregiver specific skills for reducing stress and burden. Additionally, this group will be given a screen-phone system that has the capability of allowing the user to access additional information from the research team and to participate in support groups from home.

The other group will receive their educational information through the mail and during a caregiving workshop. Cost-effectiveness of the intervention for the caregiver will be evaluated as part of the study. The program is free to all participants. Area Alzheimer’s caregivers interested in finding out more, or in participating, may call UA at 1-800-361-3196.