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.
References
- 1.
Schulz R ,Martire LM . Family caregiving of persons with dementia: prevalence, health effects, and support strategies. Am J Geriatr Psychiatry. 2004;12:240-9. [PMID: 15126224] CrossrefMedlineGoogle Scholar - 2.
Schulz R ,Beach SR . Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA. 1999;282:2215-9. [PMID: 10605972] CrossrefMedlineGoogle Scholar - 3.
Brodaty H ,Green A ,Koschera A . Meta-analysis of psychosocial interventions for caregivers of people with dementia. J Am Geriatr Soc. 2003;51:657-64. [PMID: 12752841] CrossrefMedlineGoogle Scholar - 4.
Schulz R ,Martire LM ,Klinger JN . Evidence-based caregiver interventions in geriatric psychiatry. Psychiatr Clin North Am. 2005;28:1007-38, x. [PMID: 16325738] CrossrefMedlineGoogle Scholar - 5.
Moher D ,Schulz KF ,Altman D . The CONSORT statement: revised recommendations for improving the quality of reports of parallel-group randomized trials. JAMA. 2001;285:1987-91. [PMID: 11308435] CrossrefMedlineGoogle Scholar - 6.
Wisniewski SR ,Belle SH ,Coon DW ,Marcus SM ,Ory MG ,Burgio LD ,et al . The Resources for Enhancing Alzheimer's Caregiver Health (REACH): project design and baseline characteristics. Psychol Aging. 2003;18:375-84. [PMID: 14518801] CrossrefMedlineGoogle Scholar - 7.
Belle SH ,Czaja SJ ,Schulz R ,Zhang S ,Burgio LD ,Gitlin LN ,et al . Using a new taxonomy to combine the uncombinable: integrating results across diverse interventions. Psychol Aging. 2003;18:396-405. [PMID: 14518803] CrossrefMedlineGoogle Scholar - 8.
Gitlin LN ,Belle SH ,Burgio LD ,Czaja SJ ,Mahoney D ,Gallagher-Thompson D ,et al . Effect of multicomponent interventions on caregiver burden and depression: the REACH multisite initiative at 6-month follow-up. Psychol Aging. 2003;18:361-74. [PMID: 14518800] CrossrefMedlineGoogle Scholar - 9.
Folstein MF ,Folstein SE ,McHugh PR . “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12:189-98. [PMID: 1202204] CrossrefMedlineGoogle Scholar - 10. National Archive of Computerized Data on Aging search holdings. Ann Arbor: National Archive of Computerized Data. Accessed at www.icpsr.umich.edu/NACDA/archive.html on 7 September 2006. Google Scholar
- 11. REACH II: Resources for Enhancing Alzheimer's Caregiver Health. Pittsburgh, PA: University of Pittsburgh Epidemiology Data Center. Accessed at www.edc.pitt.edu/reach2/public on 7 September 2006. Google Scholar
- 12.
Sörensen S ,Pinquart M ,Duberstein P . How effective are interventions with caregivers? An updated meta-analysis. Gerontologist. 2002;42:356-72. [PMID: 12040138] CrossrefMedlineGoogle Scholar - 13.
Brodaty H ,Green A ,Koschera A . Meta-analysis of psychosocial interventions for caregivers of people with dementia. J Am Geriatr Soc. 2003;51:657-64. [PMID: 12752841] CrossrefMedlineGoogle Scholar - 14.
Radloff L . The CES-D scale: a self-report depression scale for research in the general population. Applied Psychological Measurement. 1977;1:385-401. CrossrefGoogle Scholar - 15.
Irwin M ,Artin KH ,Oxman MN . Screening for depression in the older adult: criterion validity of the 10-item Center for Epidemiological Studies Depression Scale (CES-D). Arch Intern Med. 1999;159:1701-4. [PMID: 10448771] CrossrefMedlineGoogle Scholar - 16.
Andresen EM ,Malmgren JA ,Carter WB ,Patrick DL . Screening for depression in well older adults: evaluation of a short form of the CES-D (Center for Epidemiologic Studies Depression Scale). Am J Prev Med. 1994;10:77-84. [PMID: 8037935] CrossrefMedlineGoogle Scholar - 17.
Zarit SH ,Orr NK ,Zarit JM . The Hidden Victims of Alzheimer's Disease: Families under Stress. New York: New York Univ Pr; 1985. Google Scholar - 18.
Bédard M ,Molloy DW ,Squire L ,Dubois S ,Lever JA ,O'Donnell M . The Zarit Burden Interview: a new short version and screening version. Gerontologist. 2001;41:652-7. [PMID: 11574710] CrossrefMedlineGoogle Scholar - 19.
Barrera M ,Sandler I ,Ramsay T . Preliminary development of a scale of social support: studies on college students. American Journal of Community Psychology. 1981;9:435-41. CrossrefGoogle Scholar - 20.
Krause N . Negative interaction and satisfaction with social support among older adults. J Gerontol B Psychol Sci Soc Sci. 1995;50:P59-73. [PMID: 7757834] CrossrefMedlineGoogle Scholar - 21.
Krause N ,Markides K . Measuring social support among older adults. Int J Aging Hum Dev. 1990;30:37-53. [PMID: 2407665] CrossrefMedlineGoogle Scholar - 22.
Teri L ,Truax P ,Logsdon R ,Uomoto J ,Zarit S ,Vitaliano PP . Assessment of behavioral problems in dementia: the revised memory and behavior problems checklist. Psychol Aging. 1992;7:622-31. [PMID: 1466831] CrossrefMedlineGoogle Scholar - 23.
Schulz R ,O'Brien A ,Czaja S ,Ory M ,Norris R ,Martire LM ,et al . Dementia caregiver intervention research: in search of clinical significance. Gerontologist. 2002;42:589-602. [PMID: 12351794] CrossrefMedlineGoogle Scholar - 24.
Bull SB . Regression models for multiple outcomes in large epidemiologic studies. Stat Med. 1998;17:2179-97. [PMID: 9802177] CrossrefMedlineGoogle Scholar - 25. Davison AC, Hinkley DV. Bootstrap Methods and Their Application. Cambridge, United Kingdom: Cambridge Univ Pr; 1997. Cambridge Series in Statistical and Probabilistic Mathematics; No. 1. Google Scholar
- 26.
Cohen J . Statistical Power Analysis for the Behavioral Sciences. Hillsdale, NJ: Lawrence Erlbaum Associates; 1987. Google Scholar - 27.
Tang DI ,Gnecco C ,Geller NL . Design of group sequential clinical trials with multiple end points. Journal of the American Statistical Association. 1989;84:776-9. CrossrefGoogle Scholar - 28. Diggle PJ, Liang K, Zeger SL. Analysis of Longitudinal Data. Oxford, United Kingdom: Oxford Univ Pr; 1994. Oxford Statistical Science Series; No. 13. Google Scholar
- 29.
Jennison C ,Turnbull BW . Group Sequential Methods with Applications to Clinical Trials. Boca Raton, FL: Chapman and Hall and CRC Pr; 1999:299-316. Google Scholar - 30.
Whitfield KE ,eds . Closing the Gap: Improving the Health of Minority Elders in the New Millennium. Washington, DC: Gerontological Society of America; 2004. Google Scholar - 31.
Pfeiffer E . A short portable mental status questionnaire for the assessment of organic brain deficit in elderly patients. J Am Geriatr Soc. 1975;23:433-41. [PMID: 1159263] CrossrefMedlineGoogle Scholar - 32.
Schulz R ,Mendelsohn AB ,Haley WE ,Mahoney D ,Allen RS ,Zhang S ,et al . End-of-life care and the effects of bereavement on family caregivers of persons with dementia. N Engl J Med. 2003;349:1936-42. [PMID: 14614169] CrossrefMedlineGoogle Scholar - 33.
Schulz R ,Belle SH ,Czaja SJ ,McGinnis KA ,Stevens A ,Zhang S . Long-term care placement of dementia patients and caregiver health and well-being. JAMA. 2004;292:961-7. [PMID: 15328328] CrossrefMedlineGoogle Scholar
Author, Article, and Disclosure Information
Steven H. Belle,
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 (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 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).
Disclosures: None disclosed.
Corresponding Author: Richard Schulz, PhD, University of Pittsburgh, 121 University Place, 6th Floor, Pittsburgh, PA 15260; e-mail, schulz@pitt.
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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