Enhancing the Quality of Life of Dementia Caregivers from Different Ethnic or Racial Groups

A Randomized, Controlled Trial

21 November 2006 | Volume 145 Issue 10 | Pages 727-738

Background: Caring for a family member with dementia is extremely stressful, contributes to psychiatric and physical illness among caregivers, and increases the risk for caregiver death. Finding better ways to support family caregivers is a major public health challenge.

Objective: To test the effects of a structured multicomponent intervention on quality of life and clinical depression in caregivers and on rates of institutional placement of care recipients in 3 diverse racial or ethnic groups.

Design: Randomized, controlled trial.

Setting: In-home caregivers in 5 U.S. cities.

Participants: 212 Hispanic or Latino, 219 white or Caucasian, and 211 black or African-American caregivers and their care recipients with Alzheimer disease or related disorders.

Intervention: Caregivers within each racial or ethnic group were randomly assigned to an intervention or to a control group. The intervention addressed caregiver depression, burden, self-care, and social support and care recipient problem behaviors through 12 in-home and telephone sessions over 6 months. Caregivers in the control group received 2 brief "check-in" telephone calls during the 6-month intervention.

Measurements: The primary outcome was a quality-of-life indicator comprising measures of 6-month caregiver depression, burden, self-care, and social support and care recipient problem behaviors. Secondary outcomes were caregiver clinical depression and institutional placement of the care recipient at 6 months.

Results: Hispanic or Latino and white or Caucasian caregivers in the intervention group experienced significantly greater improvement in quality of life than those in the control group (P < 0.001 and P = 0.037, respectively). Black or African-American spouse caregivers also improved significantly more (P = 0.003). Prevalence of clinical depression was lower among caregivers in the intervention group (12.6% vs. 22.7%; P = 0.001). There were no statistically significant differences in institutionalization at 6 months.

Limitations: The study used only a single 6-month follow-up assessment, combined heterogeneous cultures and ethnicities into a single group, and excluded some ethnic groups.

Conclusions: A structured multicomponent intervention adapted to individual risk profiles can increase the quality of life of ethnically diverse dementia caregivers.

ClinicalTrials.gov identifier: NCT00177489.

Editors' Notes Context Providing care for patients with dementia can pose enormous burdens that may be eased with assistance and support. Needs may differ by race or ethnicity. Contributions The investigators randomly assigned Hispanic, black, and white dementia caregivers to receive written educational materials or an intensive intervention to improve caregiver quality of life. The specific interventions were determined by caregivers, were delivered via trained personnel and telephone support groups, and targeted several dimensions of need. The study found that quality of life improved for Hispanic and white caregivers and for black spousal caregivers in the intervention group but not in the control group. The intervention had no detectable effect on the number of care recipients who were institutionalized. Cautions The study used only a single 6-month follow-up assessment, combined heterogeneous cultures and ethnicities into 3 groups, and excluded some ethnicities. Implications An intensive intervention targeting several dimensions of caregiver need improved caregiver quality of life without an apparent effect on care recipient institutionalization. The effect did not differ by caregiver race or ethnicity. —The Editors

 

Author and Article Information

From the University of Pittsburgh, Pittsburgh, Pennsylvania; University of Alabama, Tuscaloosa, Alabama; University of Tennessee Health Science Center and Geriatrics Group of Memphis, Memphis, Tennessee; Arizona State University, Tempe, Arizona; University of Miami, Miami, Florida; Stanford University School of Medicine and Veterans Affairs Palo Alto Health Care System, Palo Alto, California; Thomas Jefferson University, Philadelphia, Pennsylvania; National Institute of Nursing Research and National Institutes of Health, Bethesda, Maryland; and Scott & White Memorial Hospital, Temple, Texas.

Note: A detailed description of the REACH II study design, methods, assessment instruments, and original de-identified data are available to the public at the National Archive of Computerized Data on Aging (http://webapp.icpsr.umich.edu/cocoon/NACDA-STUDY/04354.xml). The Study Manual of Operations, which contains detailed information about the intervention, including resource and training materials, is also available at http://www.edc.pitt.edu/reach2/public/manuals.html.

Grant Support: In part by the National Institute on Aging and the National Institute of Nursing Research (AG13305, AG13289, AG13313, AG20277, AG13265, and NR004261).

Potential Financial Conflicts of Interest: None disclosed.

Requests for Single Reprints: Richard Schulz, PhD, University of Pittsburgh, 121 University Place, 6th Floor, Pittsburgh, PA 15260; e-mail, schulz{at}pitt.edu.

Current Author Addresses: Dr. Belle: University of Pittsburgh, 130 DeSoto Street, Pittsburgh, PA 15261.

Dr. Burgio: University of Alabama, Box 870315, Tuscaloosa, AL 35487-0315.

Drs. Burns, Martindale-Adams, and Nichols: University of Tennessee, Veterans Affairs Medical Center, 1030 Jefferson, Memphis, TN 38104.

Dr. Coon: Department of Social and Behavioral Sciences, Arizona State University, 4701 West Thunderbird Road, MC 3051, Glendale, AZ 85346.

Dr. Czaja and Ms. Lee: University of Miami Miller School of Medicine, 1695 NW 9th Avenue, Miami, FL 33136.

Dr. Gallagher-Thompson: Stanford University, 795 Willow Road (182C/MP), Menlo Park, CA 94025.

Drs. Gitlin and Winter: Thomas Jefferson University, 130 South 9th Street, Philadelphia, PA 19107.

Ms. Klinger: University of Pittsburgh, 121 University Place, Pittsburgh, PA 15260.

Dr. Koepke: National Institutes of Health, National Center for Research Resources, 6701 Democracy Boulevard, Suite 710, Bethesda, MD 20892-4870.

Dr. Schulz: University of Pittsburgh, 121 University Place, 6th Floor, Pittsburgh, PA 15260.

Dr. Stahl: National Institute on Aging, 7201 Wisconsin Avenue, #533, Bethesda, MA 20892.

Dr. Stevens: Scott & White Memorial Hospital, 2401 South 31st Street, Temple, TX 76508.

Ms. Zhang: Graduate School of Public Health, University of Pittsburgh, 130 DeSoto Street, Pittsburgh, PA 15281.

Author Contributions: Conception and design: S.H. Belle, L. Burgio, R. Burns, D. Coon, S.J. Czaja, D. Gallagher-Thompson, L.N. Gitlin, J. Martindale-Adams, L. Nichols, R. Schulz, S. Stahl, A. Stevens.

Analysis and interpretation of the data: S.H. Belle, L. Burgio, R. Burns, S.J. Czaja, L.N. Gitlin, R. Schulz, S. Stahl, S. Zhang.

Drafting of the article: S.H. Belle, L. Burgio, D. Coon, S.J. Czaja, D. Gallagher-Thompson, L.N. Gitlin, J. Klinger, R. Schulz.

Critical revision of the article for important intellectual content: S.H. Belle, L. Burgio, D. Coon, S.J. Czaja, D. Gallagher-Thompson, L.N. Gitlin, J. Klinger, K.M. Koepke, R. Schulz, S. Zhang.

Final approval of the article: S.H. Belle, L. Burgio, R. Burns, S.J. Czaja, D. Gallagher-Thompson, L.N. Gitlin, K.M. Koepke, J. Martindale-Adams, L. Nichols, R. Schulz, S. Stahl, S. Zhang.

Provision of study materials or patients: L. Burgio, R. Burns, D. Coon, S.J. Czaja, D. Gallagher-Thompson, L.N. Gitlin, J. Klinger, J. Martindale-Adams, L. Nichols, R. Schulz, A. Stevens,

Statistical expertise: S.H. Belle, R. Schulz, S. Zhang.

Obtaining of funding: S.H. Belle, L. Burgio, R. Burns, D. Coon, S.J. Czaja, D. Gallagher-Thompson, L.N. Gitlin, K.M. Koepke, J. Martindale-Adams, L. Nichols, R. Schulz, S. Stahl.

Administrative, technical, or logistic support: D. Coon, D. Gallagher-Thompson, L.N. Gitlin, J. Klinger, C.C. Lee, R. Schulz, S. Stahl, L. Winter.

Collection and assembly of data: D. Coon, S.J. Czaja, D. Gallagher-Thompson, L.N. Gitlin, J. Martindale-Adams, L. Nichols, R. Schulz, A. Stevens, L. Winter, S. Zhang.