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

A Randomized, Controlled Trial

  1. Steven H. Belle, PhD;
  2. Louis Burgio, PhD;
  3. Robert Burns, MD;
  4. David Coon, PhD;
  5. Sara J. Czaja, PhD;
  6. Dolores Gallagher-Thompson, PhD;
  7. Laura N. Gitlin, PhD;
  8. Julie Klinger, MA;
  9. Kathy Mann Koepke, PhD;
  10. Chin Chin Lee, MS;
  11. Jennifer Martindale-Adams, EdD;
  12. Linda Nichols, PhD;
  13. Richard Schulz, PhD;
  14. Sidney Stahl, PhD;
  15. Alan Stevens, PhD;
  16. Laraine Winter, PhD;
  17. Song Zhang, MS; and
  18. for the Resources for Enhancing Alzheimer's Caregiver Health (REACH) II Investigators
  1. 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.

    Abstract

    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.

    Article and Author Information

    • 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.

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    1. Ann Intern Med November 21, 2006 vol. 145 no. 10 727-738
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