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Individualized intervention for dementia caregivers cuts through racial, ethnic barriers to ease burdens

November 21, 2006

There may be light at the end of the tunnel for caregivers of dementia patients.

Results of a recent study in the November 21 issue of Annals of Internal Medicine point to a significant drop in depression rates among participating caregivers who received an individualized multi-component intervention designed to address the many ways caring for a relative with dementia can take its toll.

David W. Coon, an associate professor of psychology in the New College of Interdisciplinary Arts and Sciences at Arizona State University’s West campus, is a co-author of the study.

Dementia, a progressive brain disorder, leads to a gradually increasing restriction of daily activities. The most well-known type of dementia is Alzheimer's disease. Dementia not only affects patients, but also those surrounding them, as most patients require care in the long-term.

“The study and the findings are important because finding better ways to support family caregivers is a major public health challenge facing this country,” said Coon, a member of the department of Social and Behavioral Sciences faculty at ASU.

“Providing care to a family member with dementia is extremely stressful, contributes to psychiatric and physical morbidity among family caregivers, and increases the risk of caregiver mortality.”

The study co-authored by Coon and coordinated at the University of Pittsburgh, is the first large, well-controlled caregiver study of its kind and was delivered to over 600 family caregivers from three diverse racial/ethnic caregiver groups – Hispanic/Latino, White/Caucasian, and Black/African-American. The study was designed to help reduce dementia patient problem behaviors, reduce caregiver depression and burden, and increase caregiver self-care and social support.

The results of the study are significant, noted Coon, who refers to caregivers as “the hidden patients,” because approximately 4.5 million Americans with Alzheimer’s disease live at home. Seventy-five percent are cared for by family members, making caregiver health a matter of significant interest and importance.

The study enrolled 642 people who were caring for a relative with Alzheimer’s disease or a related disorder at sites in Birmingham, AL; Memphis, TN; Miami, FL; Palo Alto, CA; and Philadelphia, PA. Hispanics, Whites and African-Americans were evenly represented. The more than 200 participants in each ethnic group were randomized to receive either the intervention or a different approach used for controlled comparison.

The multi-component intervention featured a certified interventionist who provided 12 in-home or telephone-based one-on-one sessions combined with five telephone support groups over six months. The interventionist used strategies such as role playing, problem solving, skill training, and stress management to address five areas in which caregivers commonly experience problems and that are central to caregiver quality of life: depression, caregiver burden and stress, attention to personal health needs, social support, and problem behaviors exhibited by the care recipient. Based on the intensity with which each caregiver experienced problems in those areas, the intervention was tailored to meet the individual needs.

Coon, an investigator at the Palo Alto site prior to joining ASU, is taking the study a step further locally.

“We are working in cooperation with the State of Arizona and the NIA-funded Arizona Alzheimer’s Consortium to form partnerships with Barrow Neurological Institute, Banner Alzheimer’s Institute, Sun Health Research Institute, Mayo Clinic, and the Desert Southwest Chapter of Alzheimer’s Association on two new projects serving families caring for older adults with memory problems,” said Coon. “We are addressing the needs of caregivers who are facing their own physical health concerns in addition to their caregiving responsibilities, and by streamlining key aspects of the original intervention project to increase its cost effectiveness.”

Coon’s “Assisting Latino Caregivers Project” provides free educational, skill building, and supportive services to Latino family caregivers, and provides the opportunity to meet other caregivers. The “Caregiver Health and Wellness Project” involves a personal interview with both Latino and Anglo/White caregivers who have their own chronic health conditions (overweight, Type II diabetes, high blood pressure). Participants in the Caregiver Health and Wellness Project are also offered a free workshop focused on strategies to enhance caregiver well-being and reduce caregiver stress.

“Both these programs have been created to obtain valuable input about caregiving for older adults with memory problems and to learn more about the types of programs that are needed, but may not yet be available to the community.” said Coon

“Clearly, we want to partner with families and health and social service professionals to identify caregivers whose quality of life has been compromised, and provide the assistance they need. We hope to expand our partnerships and work in the future to include other organizations and other communities of caregivers.”