PROGRESS REPORTS
May 2000
Supported by:
National Institute on Aging
National Institute of Nursing Research
Prepared by:
REACH Coordinating Center
University of Pittsburgh
University Center for Social and Urban Research
121 University Place
Pittsburgh, Pennsylvania 15260
REACH Progress Report - Table of Contents
Title Page Number
Executive Summary…...………….………………………………………………….…….. 3
Listing of Program Administrators and Principal Investigators.……………………………7
University of Alabama ……………………………………………….……………….…… 8
Hebrew Rehabilitation Center for Aged, Research and Training Institute……………..….. 19
The University of Tennessee – Memphis…………………………………………….……. 31
University of Miami…………………………………………………………..……………. 38
VA Palo Alto Health Care System and Stanford University School of Medicine…………. 49
Thomas Jefferson University………………………………………………………………. 63
The University of Pittsburgh – Coordinating Center………………………………………. 73
Conceptual Framework Workgroup Progress Report……………………………………… 81
REACH Timeline of Activities for 9-Month Bridge Period and Proposed
Follow-up Phase…………………………………………………………………………….94
REACH Executive Summary
May 2000
Description of Project
Resources for Enhancing Alzheimer's Caregiver Health (REACH) is a five-year initiative that was established in 1995 by the National Institutes of Health under leadership of the National Institute on Aging. Its primary purpose is to carry out social and behavioral research on interventions designed to enhance family caregiving for Alzheimer's Disease and related disorders. Six research sites and a coordinating center have been funded through cooperative agreements with the National Institute on Aging and the National Institute of Nursing Research. These projects focus on characterizing and testing the most promising home and community based interventions for enhancing family caregiving, particularly with minority families. The interventions include psychoeducational support groups, behavioral skills training programs, family-based systems interventions, environmental modifications, and technological computer-based information and communication services. The coordinating center facilitates cooperation and standardization of the core protocol across all sites, and is responsible for developing and maintaining a common database as well as carrying out all cross-site analyses. A major outcome of this initiative will be the availability of a pooled database that will enable investigators to answer key questions about optimal intervention strategies for maintaining and improving the health and quality of life of caregivers of dementia patients. Psychological distress (e.g., depressive symptomatology) is the primary outcome of interest, but impacts on health status, health practices, and health care utilization will also be assessed.
Project Timeframe and Accomplishments (1995-2000)
Year 01: The first year was spent developing the common core assessment battery, study design, and manual of operations. Multiple measures were pretested prior to their implementation. Training and certification procedures for data collection and interventions were also developed for both core and site specific data and for the interventions implemented at each site.
Year 02: During the second year research staff were trained and certified for data collection; data entry and remote data transfer systems were developed and implemented, and personnel were trained in use of common computer hardware and software at the intervention sites. All sites entered the field and began recruitment and data collection. In addition, all follow-up batteries including those aimed at assessing the effects of bereavement and care recipient institutionalization were developed.
Year 03: Recruitment and all interventions continued in year three. Meeting recruitment goals was a primary focus during the year. Several additional assessment instruments were developed, including a Project Evaluation Form, Intervention Delivery Assessment Form and Interventionist Characteristics Form. Given the large number of requests for the REACH assessment battery, all forms as well as instructions for their use were prepared for dissemination on a CD-ROM, which is now available to investigators at a nominal cost.
One of the important contributions of the REACH investigators is the development of a conceptual framework aimed at characterizing diverse social/behavioral interventions and at facilitating cross-site analysis. At the suggestion of the External Advisory Committee REACH investigators began to explore the use of an innovative analytic approach called optimization analysis to the REACH data. If successful, this methodology will enable us to identify the optimal mix of intervention strategies for achieving maximal positive outcomes. During year three the group developed a broad conceptual framework for the REACH project as a whole and identified common metrics that might be used to characterize the interventions or components of interventions at each site.
Year 04: Recruitment closed this year for five of the six sites (one site joined the study late). Data management and quality control procedures, including annual site visits, were implemented to assure that the data are of the highest quality. Interviewer variability, attrition, randomization, intervention drift, and missing data continued to be monitored. Performance on all of these indicators was outstanding across all sites.
A major activity of the REACH group during year four was the further development of the conceptual framework. The interventions were allocated to the framework using Analytical Hierarchy Process and then validated by a group of internal raters. Preliminary optimization analyses were performed and demonstrated that statistical optimization techniques can be successfully applied to the REACH dataset.
A psychometric analytical approach was also developed during year four and preliminary analyses on the core assessment battery were completed. These analyses were presented to the REACH psychometric consultant, Dr. John Nesselroade, for approval and further suggestions. Plans were made for carrying out baseline and six-month psychometric analyses during year five once the final data set becomes available.
Dissemination activities for the REACH Team included a book to be published by Springer Publishing in 2000 entitled Handbook of Dementia Caregiving Intervention Research, several in press journal publications and chapters, and numerous symposia and other professional presentations. In addition REACH generated dozens of related journal publications. The REACH website (http://www.edc.gsph.pitt.edu/reach/) continued to be updated and maintained.
Year 05 (Current Year): The fifth year of this five-year cooperative agreement began on September 1, 1999. Below are the ongoing and completed activities for Year 05:
· Recruitment closed at the sixth intervention site.
· Interventions are ongoing at all sites except Boston.
· Data collection is ongoing at all sites.
· Retention efforts have become a primary focus.
· Initial psychometric analyses are ongoing.
· Baseline and six-month outcomes data analyses are ongoing.
· Conceptual Framework activities include selecting optimization techniques that can be applied to the REACH dataset and developing models that specify the relationship between intervention mechanisms and outcomes. Analyses based on the conceptual framework will begin using the six-month dataset.
· The investigators continue to collaborate in the preparation of multi-site manuscripts and presentations as well as prepare and disseminate site-specific research findings resulting from this research program (in year 05 we will be limited to analysis of baseline and six-month data on non-primary outcomes).
The following major baseline papers are underway:
1. Description of AD caregivers - do caregivers differ by ethnicity in caregiving stressors, appraisal, coping responses, social support, formal supports, and mental and physical health?
2. Stress process model - within a stress process model, what factors predict individual differences in caregiver mental and physical health.
3. Psychometric analyses of instruments/scales used in REACH - multiple papers focused on specific measures will examine ethnic and age-related variation in the measurement properties of instruments used in REACH.
4. Resource utilization - examine resource utilization and cost by ethnicity, caregiver relationship, etc.
5. Recruitment and retention - descriptive paper characterizing process and outcomes.
Current Recruitment Status (Study Participant) as of March 31, 2000*
University of Alabama / Hebrew Rehabilitation Center for Aged / University of Tennessee / University of Miami / VA Palo Alto Health Care System / Thomas Jefferson University(still recruiting) / All sites Combined
Randomized as of 3/31/00 / 140 / 100 / 245 / 225 / 257 / 255 / 1222
% White, Caucasian / 57.14 / 79.00 / 58.37 / 49.78 / 57.20 / 48.24 / 55.97%
% Black, African American / 42.86 / 16.00 / 39.59 / 0.00 / 0.00 / 47.84 / 24.14%
% Hispanic (Mexican) / 0.00 / 0.00 / 0.00 / 0.00 / 29.96 / 0.00 / 6.30%
% Hispanic (Cuban) / 0.00 / 0.00 / 0.41 / 50.22 / 0.78 / 0.00 / 9.49%
% Hispanic (Puerto Rican, Dominican, Other) / 0.00 / 2.00 / 0.41 / 0.00 / 12.06 / 1.96 / 3.19%
% Other (Native American, Asian, No Primary) / 0.00 / 3.00 / 0.82 / 0.00 / 0.00 / 1.96 / 0.82%
% Refused / 0.00 / 0.00 / 0.41 / 0.00 / 0.00 / 0.00 / 0.08%
*Recruitment completed at all six sites as of 3/31/00
PROGRAM ADMINISTRATORS
Marcia Ory, Ph.D., MPH Mary Leveck, Ph.D., R.N.
National Institute on Aging National Institute of Nursing Research
Bethesda, Maryland Bethesda, Maryland Bethesda, Maryland
(301) 402-4156 (301) 594-5963
COORDINATING CENTER
Richard Schulz, Ph.D Joy Herrington, M.Ed.
Principal Investigator Project Coordinator
University of Pittsburgh University of Pittsburgh
Pittsburgh, Pennsylvania Pittsburgh, Pennsylvania
(412) 624-2311 (412) 624-9177
PRINCIPAL INVESTIGATORS INSTITUTE
Louis Burgio, Ph.D. Applied Gerontology Program
University of Alabama
Tuscaloosa, Alabama
(205) 348-7511
Robert Burns, M.D. University of Tennessee
Memphis, Tennessee
(901) 577-7433
Carl Eisdorfer, Ph.D., M.D. Center on Adult Development and Aging
University of Miami
Miami, Florida
(305) 355-9076
Dolores Gallagher-Thompson, Ph.D. Veterans Affairs Palo Alto Health Care System and Stanford University School of Medicine
Menlo Park, California
(415) 493-5000 x 22005
Laura Gitlin, Ph.D. Community and Homecare Research Division
Thomas Jefferson University
Philadelphia, Pennsylvania
(215) 503-2896
Diane Mahoney, Ph.D. Hebrew Rehabilitation Center for Aged,
Research and Training Institute
Boston, Massachusetts
(617) 363-8545
UNIVERSITY OF ALABAMA*
Skill Training for African American and White Caregivers
REACH Progress Report
May 2000
Louis D. Burgio, Ph.D., Principal Investigator
* Formerly located at the University of Alabama at Birmingham (UAB). The project was transferred to the University of Alabama (UA) in September 1998. Clinical and data collection activities continue at UAB at the direction of a subcontract from UA to UAB.
GOALS OF THE STUDY
Numerous studies have shown that caregiving stress places families at increased risk for high levels of burden, and for poorer well being in such areas as psychological, social, and physical health outcomes. Evidence suggests that African American and White caregivers have a number of problems in common, including managing similar care recipient behavior problems and self-care impairments, and similar reductions in social and leisure activities. This project examines the effects of an intervention designed to address the needs of both African American and White dementia caregivers. Our intervention program combines care recipient-focused behavior management skill training and caregiver-focused problem solving skill training. Behavior management skill training focuses on care recipient behavioral excesses and remediable deficits, which are major caregiver stressors. Caregiver problem solving skills target caregiver behaviors of increasing pleasant events and positive health behaviors; however, caregivers are free to target other problem areas. The effects of caregiver Skill Training is compared with a telephone-based Minimal Support Condition, which provides minimal therapist support to the caregiver. Through 10-20 minute phone contacts, caregivers in the Minimal Support Condition (MSC) receive active listening and empathy from research staff. Both groups receive therapeutic contact at the same intervals and receive non-specific written educational material on dementia and problems associated with the disease.
The project has three specific aims. The first aim is to evaluate the effects of a caregiver training and intervention program on a comprehensive set of measures, as compared with a telephone-based MSC. We hypothesize that the more active skill training based intervention will provide the caregiver with superior caregiving strategies, which may improve the caregiver’s physical and emotional well-being. The second aim is to assess the effects of the skill training intervention program on the behaviors of the dementia patients themselves. We are investigating the impact of the skill-training program on behavioral deficits (e.g., impairment in ADL/IADLs), behavioral excesses (e.g., disruptive vocalization), and a new measure of care recipient quality of life (QOL). The skill training intervention provides the caregiver with superior caregiving skills to address these difficult care recipient behaviors as compared to the MSC. The third aim is to investigate possible racial differences in caregiver skill acquisition and performance, differences in treatment effects on caregiver psychosocial and health related outcome measures, and any differences in the dementia patients' responsiveness to the interventions. Although our intervention has been designed to be culturally sensitive to the caregiving needs of both African Americans and Whites, we will explore differential responses to the intervention program.
SAMPLE RECRUITMENT AND RETENTION
Caregiver-care recipient (CG/CR) dyads were recruited from university sources and community based AD organizations. The UAB Alzheimer's Disease Center Memory Disorders Clinic (ADC; Lindy Harrell, MD, Director), geriatric clinics at UAB, and the UAB Alzheimer's Family Program served as university based recruitment sources. We also received referrals from community based agencies, including the Birmingham Area Visiting Nurses Association (VNA; Morris Hyatt, CEO) and Alzheimer’s of Central Alabama (ACA). All recruitment sites received periodic friendly reminders of our need for subjects. Recruitment and advertising efforts in the greater Birmingham area also resulted in a significant number of self-referrals.
University-based Recruitment Sources
UAB ADC Caregiver Recruitment. Dementia caregivers and their care recipients were identified through our Memory Disorders Clinic (Director, Lindy Harrell, M.D.), which is a multi-disciplinary clinic dedicated to diagnosing, treating, and following patients with cognitive decline. Currently, 400 new and 1200 return visits occur yearly, with African Americans representing 20% of this population and AD representing 90% of all diagnoses.
UAB Geriatric Clinic Caregiver Recruitment. We used the UAB Geriatric Primary Care Clinic (GPCC) and the Geriatric Assessment Clinic (GAC) as secondary sources for recruitment. The GPCC sees approximately 1200 patients per year, including 300 who are new to the UAB system. Twenty-four percent are African American. The GAC sees 250 new patients per year. Most of these patients are referred from outside of the UAB system.
UAB Alzheimer's Family Program. The UAB Alzheimer's Family Program also served as a secondary recruitment source. This program provides advice and information to the caregivers of people with Alzheimer's disease through regular meetings and outreach. In 1995, the Alzheimer's Family Program received approximately 2400 calls from care recipients seeking support. It is estimated that 25% were African American.