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Correspondence: Address correspondence to Richard Schulz, PhD, University of Pittsburgh, University Center for Social and Urban Research, 121 University Place, Pittsburgh, PA 15260. E-mail: schulz{at}pitt.edu
Established in 1995, Resources for Enhancing Alzheimer's Caregiver Health (REACH) is a unique, multisite research program sponsored by the National Institute on Aging and the National Institute on Nursing Research. The primary purpose of REACH is to carry out social and behavioral research on interventions designed to enhance family caregiving for Alzheimer's disease (AD) and related disorders. Specifically, REACH has two goals: to test the effectiveness of multiple different interventions and to evaluate the pooled effect of REACH interventions overall. REACH developed from a National Institutes of Health initiative that acknowledged the well-documented burdens associated with family caregiving as well as the existence of promising family caregiver interventions reported in the literature.
Six sites (Boston, Birmingham, Memphis, Miami, Palo Alto, and Philadelphia) developed and evaluated a variety of multicomponent interventions for family caregivers of persons with AD at the mild or moderate level of impairment. The interventions implemented across the six sites included: (a) Individual Information and Support Strategies, (b) Group Support and Family Systems Therapy, (c) Psychoeducational and Skill-Based Training Approaches, (d) Home-Based Environmental Interventions, and (e) Enhanced Technology Support Systems (see Table 1). Although the interventions were derived from diverse theoretical frameworks, they are all consistent with basic health-stress models in which the goal is to change the nature of specific stressors (e.g., problem behavior of the care recipient), their appraisal, and/or the caregivers' response to the stressors. All of the REACH interventions were guided by detailed treatment manuals and certification procedures that ensured that the interventions were delivered as intended and consistently over time at each site. Careful attention was also paid to the issue of treatment fidelity. Different strategies were used at each site to induce and assess all three fundamental aspects of treatment implementation: delivery, receipt, and enactment (Burgio et al., 2001). In addition, because the caregiving experience in race and ethnic minority families is particularly neglected in this field, a strong emphasis was placed on the inclusion of African American and Hispanic caregivers (see Tables 2 and 3 for descriptions of caregivers and care recipients). Thus, assessments as well as interventions were tailored at each site to meet the needs of culturally diverse racial/ethnic majority and minority populations, briefly described in Table 1.
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Although REACH has some of the features of a traditional multisite randomized controlled clinical trial (e.g., random assignment of participants to treatment and control conditions, common database and outcome measures, and identical measurement intervals across sites), it differs on one key dimension—the interventions varied across sites. REACH was designed to examine the feasibility and outcomes of multiple different intervention approaches, rather than to provide definitive information on the efficacy of one specific intervention strategy for enhancing caregiver outcomes. The strength of this approach is that it efficiently yields information about the effectiveness of different approaches to AD caregiving as well as the combined effects of active treatment versus controls.
Four articles currently in press provide a detailed description of the REACH program overall (Wisniewski et al., in press), as well as report treatment effects based on two widely used indicators of caregiver status, depression, and burden (Gitlin et al., in press; Belle et al., in press). Wisniewski et al. (in press) provides a detailed description of the project and the interventions, the randomization strategies used, the standardized battery of measures, and the characteristics of the 1222 caregivers and care recipients recruited into the study. Using a preplanned meta-analytic approach (Gitlin et al., in press), and based on a conceptual framework that enables cross-site comparisons of intervention components (Czaja, Schulz, Lee, & Belle, in press; Belle et al., in press), the following results were obtained:
The purpose of the six articles that follow is to report the site-specific effects of the REACH interventions. Although the analyses reported by Gitlin et al. and Belle et al. provide an overall view of active treatment versus controls across all sites, they are limited with respect to exploring the impact of individual interventions, the range of outcomes examined, and the depth of analyses carried out at each site. The papers that follow provide a detailed description of each intervention and the associated treatment effects at each of the six sites.
The first article (Mahoney et al., 2003) reports the results of the intervention study carried out in the Boston, Massachusetts area and shows that wives who exhibited low mastery and high anxiety benefited the most from an automated telecare intervention. A behavioral skills training intervention carried out in Birmingham, Alabama showed differential effects for African American and nonspouse caregivers (Burgio et al., 2003), with each of these groups showing greater benefits than comparison groups of White and spousal caregivers, respectively. Burns et al. (2003) examined long-term outcomes among caregivers residing in the Memphis, Tennessee area and showed that a long-term education intervention based in a primary care setting was effective in reducing caregiver stress and burden. The Miami intervention study (Eisdorfer et al., 2003) demonstrated that information technology has a promising role in alleviating the distress and depression among White and Cuban American AD caregivers. Researchers from Palo Alto, California (Gallagher-Thompson et al., 2003) were able to demonstrate improved coping among female caregivers who participated in an intervention designed to enhance skills for managing distress. Finally, an environmental skill-building intervention carried out in Philadelphia, Pennsylvania (Gitlin et al., 2003) resulted in less upset with memory-related behaviors and improved affect in intervention caregivers when compared with individuals in the control condition. Also, women in intervention tended to benefit more than men did in areas of mastery and ability to manage daily caregiving tasks. Overall, these studies provide a rich array of effective intervention strategies that can be used to enhance different outcomes for caregivers of persons with dementia. They also emphasize the interactive nature of different treatment approaches with caregiver characteristics and provide important leads about which types of interventions work with which types of caregivers.
The lessons learned from REACH were instrumental in designing the follow-up study, REACH II. In contrast to REACH, the primary goal of REACH II is to test a single intervention at multiple sites with an ethnically diverse caregiver population. Thus, REACH II is a traditional randomized clinical trial with all sites implementing the same intervention and collecting the same data. The design of the intervention was based on a careful analysis of outcomes in REACH as well as a review of the current literature in this area (Schulz et al., 2002; Sörensen, Pinquart, Habil, & Duberstein, 2002). The overriding message from both of these sources is that caregiving presents multiple challenges that are not easily addressed. As a result, there is no single, easily implemented, and consistently effective method for achieving clinically significant effects among caregivers or care recipients.
One of the disappointments in the caregiving intervention research literature has been the relative lack of success in achieving clinically meaningful outcomes. Researchers have achieved small-to-moderate statistically significant effects on a wide variety of indicators such as depressive symptoms, burden, and other indicators of psychological well-being. The lack of strong findings is in part due to the misapplication of intervention approaches borrowed from medical and psychotherapeutic trials. With rare exception, caregivers typically do not fall into single syndromal clinical categories that lend themselves to a clearly targeted intervention. For example, although most caregivers have elevated levels of depressive symptoms, they do not meet criteria for clinical depression. Thus, unless one targets specific subgroups of caregivers who are clinically depressed, the ability to demonstrate large effects is constrained by the moderate level of the problem being addressed and the limited range of improvement possible. In general, caregivers can be characterized as having problems in multiple interrelated domains that exist at varying, but typically not extreme, levels of intensity. The intervention approach selected for REACH II is based on this assumption and is designed to maximize outcomes in multiple different domains by tailoring the intervention to respond to individual variation in risk.
Many caregiving interventions involve several treatment elements aimed at simultaneously addressing multiple problems. Multicomponent interventions delivered in high doses are generally more effective than more narrowly targeted interventions (Schulz, 2000; Sörensen et al., 2002). Although we subscribe to the multicomponent approach to caregiver interventions, we diverge from the existing literature in an important way. Based on our assessment of the existing literature and the experience of REACH, we believe a "one size fits all" approach to caregiver interventions is likely to be ineffective. Because of the diversity of challenges inherent in the caregiving situation, interventions need to allow for some degree of tailoring of intervention components to meet the specific needs of the individual. Thus, we subscribe to a structured—but at the same time, tailored—approach to delivering interventions that are responsive to individual risk profiles.
In order to assess the variability in the needs of caregivers/care recipients, we use a risk appraisal approach in REACH II to determine how much emphasis we place on each of the treatment components. Our intervention approach targets multiple components of the stress-health process and focuses on five areas linked to caregiver health outcomes: safety, self-care, social support, emotional well-being, and problem behaviors. The risk appraisal helps us prioritize these intervention components. Thus, the intervention is standardized with respect to the treatment components available, but varies with respect to the dosing or depth of treatment delivered for each of the available treatment components. For example, persons in active treatment who have minimal problems with depression will receive only a small dose of the intervention component designed to enhance emotional well-being. This will enable the interventionist to concentrate on those areas where risk factors are highest. In order to deliver the intervention in a cost-effective manner, we use a combination of in-home visits augmented by telephone-based technology found to be effective in REACH.
We are currently in the early stages of implementing REACH II, and it is therefore too early to report findings from this effort. However, we strongly believe that the REACH II research program will generate effective intervention strategies for caregivers of persons with dementia, and at the same time will advance the science of conducting complex randomized clinical trials in the social and behavioral sciences.
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 TOP Appendix References |
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University of Alabama (Birmingham and Tuscaloosa, Alabama): Louis Burgio, PhD (Principal Investigator–Tuscaloosa), Alan Stevens, PhD (Principal Investigator–Birmingham), Alfred Bartolucci, PhD, Delois Guy, PhD, William Haley, PhD, David Roth, PhD, David E. Vance, MGS, MS.
Hebrew Rehabilitation Center for Aged Research and Training Institute (Boston, Massachusetts): Diane Mahoney, PhD (Principal Investigator), Robert Friedman, MD, Brooke Harrow, PhD, Timothy Heeren, PhD (former investigator), Richard Jones, PhD, Barbara Tarlow, PhD, Sharon Tennstedt, PhD, Ladislav Volicer, MD, PhD.
University of Tennessee (Memphis, Tennessee): Robert Burns, MD (Principal Investigator), Marshall Graney, PhD, Kenneth Lichstein, PhD, Jennifer Martindale-Adams, EdD, Linda Nichols, PhD, Allan Lummus, MA.
University of Miami (Miami, Florida): Carl Eisdorfer, MD, PhD (Principal Investigator), Soledad Arguelles, PhD, Trinidad Arguelles, MS, Judy Bean, PhD (former investigator), Sara Czaja, PhD, David Loewenstein, PhD, Mark Rubert, PhD, Jose Szapocznik, PhD.
Veterans Affairs Palo Alto Health Care System and Stanford University School of Medicine (Palo Alto, California): Dolores Gallagher-Thompson, PhD, ABPP, (Principal Investigator), Patricia Arean, PhD, David W. Coon, PhD, Helena Kraemer, PhD, Larry Thompson, PhD.
Thomas Jefferson University (Philadelphia, Pennsylvania): Laura N. Gitlin, PhD (Principal Investigator), Mary Corcoran, PhD, Walter Hauck, PhD, Susan Klein, MA, Laraine Winter, PhD, Marie P. Dennis, PhD, Sandy Schinfeld, MPH.
Project Office, National Institutes of Health: Marcia Ory, PhD, MPH (former officer), Mary Leveck, PhD (former officer), Karin Helmer, PhD, Sidney Stahl, PhD.
Coordinating Center, University of Pittsburgh (Pittsburgh, Pennsylvania): Richard Schulz, PhD (Principal Investigator), Steven H. Belle, PhD, Joy Herrington, MEd, Stephen R. Wisniewski, PhD, Aaron B. Mendelsohn, PhD, Song Zhang, PhD, Jason Newsom, PhD (former staff), Galen Switzer, PhD (former staff).
External Advisory Committee: Patricia Archbold, DNSc, Oregon Health Sciences University; Larry Beutler, PhD (former member), University of California, Santa Barbara; Joel Greenhouse, PhD, Carnegie Mellon University; J. Neil Henderson, PhD, University of South Florida; Ira Katz, MD, PhD, University of Pennsylvania; M. Powell Lawton, PhD, Philadelphia Geriatric Center (deceased); Len Pearlin, PhD, University of Maryland; May Wykle, PhD, Case Western Reserve University.
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1 University of Pittsburgh, University Center for Social and Urban Research, Pennsylvania.
2 Applied Gerontology Program, University of Alabama, Tuscaloosa.
3 MEDSenior Connection, Regional Medical Center, Memphis, and Departments of Preventive Medicine and Internal Medicine, University of Tennessee Health Science Center, Memphis.
4 Department of Psychiatry and Behavioral Sciences, Center on Adult Development and Aging, University of Miami School of Medicine, Florida.
5 Older Adult & Family Center, VA Palo Alto Health Care System, and Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Menlo Park, California.
6 Community and Homecare Research Division (CHORD), Thomas Jefferson University, Philadelphia, Pennsylvania.
7 Hebrew Rehabilitation Center for Aged, Research and Training Institute, Boston, Massachusetts.
Decision Editor: Laurence G. Branch, PhD
Received for publication May 9, 2002. Accepted for publication August 14, 2002.
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