Novel program enhances dementia caregivers' quality of life

A multifaceted, personalized intervention can significantly improve the quality of life for caregivers of people with dementia, new research published Nov. 21, 2006, in Annals of Internal Medicine has found. The study, Resources for Enhancing Alzheimer's Caregiver Health II (REACH II), is the first randomized, controlled trial to look systematically at the effectiveness of a multi-component caregiver intervention provided to ethnically diverse populations. Follow-up studies, the researchers suggest, should examine how the intervention might be used in communities through the nation's existing network of health and aging services.

REACH II was funded by the National Institute on Aging (NIA) and the National Institute of Nursing Research (NINR), both components of the National Institutes of Health (NIH). The research was conducted at five sites nationwide--the University of Alabama (Birmingham and Tuscaloosa), Thomas Jefferson University (Philadelphia), the University of Tennessee (Memphis), the University of Miami (Fla.) and Stanford University (Palo Alto, Calif.). The University of Pittsburgh served as the coordinating center, and Pittsburgh's Richard Schulz, Ph.D., was corresponding author for the study.

"Family members and friends provide most of the care for millions of people with dementia who live at home, often facing challenges that can seriously compromise their own quality of life," notes NIA Director Richard J. Hodes, M.D. "REACH II tells us that a well-designed, tailored intervention can make a positive, meaningful difference in caregivers' lives."

"This important research demonstrates that the intervention can readily benefit the diverse communities of caretakers who provide care to individuals with Alzheimer's disease," adds NINR Director Dr. Patricia A. Grady. "It also underscores the substantial cost that caregivers face--financially, physically, spiritually and emotionally--and helps to illustrate why caregiving research is a priority for NINR and NIA."

The REACH II study included 642 individuals, more than 200 each of Hispanic, white and African American caregivers of persons with dementia. The caregivers within each ethnic/racial group were randomly assigned to either an intervention or a control group.

Trained project staff visited the caregivers in the intervention group at home nine times, talked with them during three half-hour telephone calls, and offered five structured telephone support sessions. The strategies included information sharing, instruction, role playing, problem solving, skills training, stress-management techniques and telephone support groups. Those in the control group received a packet of dementia education materials and two brief "check-in" telephone calls. Spanish-language services and materials were offered to the Spanish-speaking caregivers in Miami, Palo Alto and Philadelphia.

Before the services began and six months later, researchers assessed caregivers' quality of life overall and in five specific quality of life areas: depressive symptoms, the burden of caregiving (such as the level of stress), engagement in self-care activities (such as getting rest or seeing a doctor when needed), level of social support, and problem behaviors exhibited by the person with dementia. The investigators also measured the prevalence of clinical depression among the caregivers and collected data on whether the care recipients had been placed in institutions during the six-month study period.

After six months, improvements in the caregivers' overall quality of life were significant among the Hispanic and white caregivers who took part in the intervention and, while significant among African American spouse caregivers, were less so among non-spouse African American caregivers. Large and clinically important quality of life improvements were found for 45 percent of Hispanic caregivers, 40 percent of white caregivers and 28 percent of African American caregivers in the intervention group, compared with 7 percent, 13 percent and 11 percent among Hispanics, whites and African Americans, respectively, in the control group.

For Hispanics, the intervention was found to be most effective in reducing depressive symptoms and problem behaviors of the care recipient. Among whites, the greatest impact was in the area of social support, and among African Americans, there were positive effects specifically in reducing the caregiver burden and improving self-care among spouse caregivers.

The research also showed that following the program, the rate of clinical depression was significantly lower among caregivers in the intervention group than those in the control group (12.6 percent and 22.7 percent, respectively). The rate of institutionalization for care recipients was lower in the intervention group when compared with the control group (4.3 percent vs. 7.2 percent), but this difference was not statistically significant.

The researchers also collected data on how study participants viewed the intervention. Caregivers in the intervention group reported that taking part in the program helped them feel more confident in working with the care recipient, made life easier for them, improved their ability to care for the person with dementia, improved the care recipient's life, and helped them keep the patient at home. Many members of the control group also said they benefited "some" or "a great deal" from participating in the study, suggesting that even minimal support and attention can help caregivers.

"REACH II was a carefully constructed, controlled study involving a diverse group of caregivers at five sites across the country. We are excited to demonstrate that the intervention really helps family members caring for people with Alzheimer's," says Sidney M. Stahl, Ph.D., chief of the Individual Behavioral Processes Branch within the NIA's Behavioral and Social Research Program. Based on the current study, the REACH program looks promising for widespread community use, especially if the outcomes are replicated by other organizations and the program is found to be cost-effective when compared with alternatives, Stahl adds.

The study was developed based on the findings of the earlier REACH I study, which tested multiple interventions at six sites in the United States to identify the most promising approaches to decrease caregiver burden and depression.

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The NIA leads the federal effort supporting and conducting research on aging and the medical, social and behavioral issues of older people, including Alzheimer's disease and age-related cognitive decline. For information on dementia and aging, please visit the NIA's Alzheimer's Disease Education and Referral (ADEAR) Center at www.nia.nih.gov/alzheimers, or call 1-800-438-4380. For more general information on research and aging, go to www.nia.nih.gov.

The primary mission of the NINR is to support clinical and basic research to establish a scientific basis for the care of individuals across the life span. For additional information, visit the NINR Web site at www.ninr.nih.gov.

NIH--the nation's medical research agency--includes 27 institutes and centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

To reach the corresponding author, Richard Schulz, Ph.D, professor of psychiatry, School of Medicine, University of Pittsburgh, contact Jocelyn Uhl Duffy at 412-647-3555 or uhljh@upmc.edu.


Last reviewed: By John M. Grohol, Psy.D. on 21 Feb 2009
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