Individualized dementia caregiver intervention cuts through racial, ethnic barriers to ease burden

Importantly, the researchers found that, overall, the intervention was effective across racial and ethnic groups, with the most significant improvements among Hispanic and white caregivers. In African-Americans, the intervention was effective among spouse-caregivers, but relatively ineffective among caregivers who were caring for a relative other than their husband or wife. Results of the study, the first randomized, controlled trial to look at the effectiveness of a multi-component caregiver intervention on quality of life across an ethnically diverse population are published in the Nov. 21 issue of Annals of Internal Medicine.

The findings are significant, say the researchers, because not only is caring for a loved one with dementia extremely stressful, the experience can contribute to the development of psychiatric and physical illnesses and increased risk for death. Approximately 4.5 million Americans with Alzheimer's disease live at home with 75 percent being cared for by family members, making caregiver health a matter of significant interest and importance.

“Caring for a loved one with dementia presents a number of challenges that can seriously compromise the caregiver's quality of life,” said Richard Schulz, Ph.D., professor of psychiatry at the University of Pittsburgh School of Medicine, and the study's corresponding author. “For the millions of Americans who care for a loved one at home, an intervention that can improve their quality of life and lessen the burden of caregiving can make meaningful differences in their ability to better care both for themselves and their loved ones.”

The study enrolled 642 people who were caring for a relative with Alzheimer's disease or a related disorder at sites in Birmingham, Ala.; Memphis, Tenn.; Miami; Palo Alto, Calif.; and Philadelphia. 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 an approach used for controlled comparison.

The study intervention used strategies such as role playing, problem solving, skills training, stress management and telephone support groups 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, such as aggressive outbursts or feelings of hopelessness. Based on the intensity with which each caregiver experienced problems in these areas, the intervention was tailored to meet the individual needs, providing the skills necessary to better cope with the inherent stress of round-the-clock care and help manage troublesome behaviors in both the care recipient and themselves.

In the intervention, a certified interventionist provided 12 one-on-one sessions over six months. Nine sessions took place in the caregiver's home and three occurred by phone. Caregivers also participated in five structured telephone support group sessions. Control group participants were given educational materials and received two brief “check-in” calls at three and five months. Both groups were evaluated on the five measures (depression, caregiver burden, self-care, social support and problem behaviors) and for clinical depression at the beginning of the study and at six months.

Hispanic and white participants saw the greatest benefit. African-American spouse-caregivers also saw improvement in the problem areas as a result of the intervention, while African-Americans caring for a non-spousal relative did not see any benefit. In the intervention group, Hispanics had the greatest improvement in reduction of caregiver depressive symptoms and problem behaviors of the recipient. Whites saw the most impact in the area of social support and African-American spouse-caregivers had the most positive outcome in reducing the caregiver burden and improving self-care.

At six-month follow-up, the rate of clinical depression was significantly lower among the participants who received the intervention than those in the control group. Caregivers also reported that the intervention helped them feel more confident and able to deal with caring for their loved one, improved the care-recipient's quality of life and helped them keep the recipient at home.

“Medicine doesn't work in the same way across all races and ethnicities, or even from person-to-person,” added Dr. Schulz who also is associate director of the University of Pittsburgh Institute on Aging and director of the Center for Social and Urban Research. “Health professionals need to identify caregivers whose quality of life has been compromised and help them to get the help they need, for their sake and the sake of their loved ones.”

The study intervention was developed based on findings from the first phase of this study, Resources for Enhancing Alzheimer's Caregiver Health (REACH) I, in which they tested multiple caregiver interventions to identify which were the most promising. In that study, researchers found that caregivers experienced similar problems at differing levels of intensity, and identified the need for developing an intervention that could be tailored to address the most troublesome problems for each individual caregiver.