UNIVERSITY OF ALABAMA*

Skill Training for African American and White Caregivers

REACH Progress Report

July 1999

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 are 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 serve as university based recruitment sources. We also receive 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 receive periodic friendly reminders of our need for subjects.  Recruitment and advertising efforts in the greater Birmingham area have also resulted in a significant number of self-referrals.    

University-based Recruitment Sources

UAB ADC Caregiver Recruitment.  Dementia caregivers and their care recipients are 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 use 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 serves 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. 

Community-based Recruitment Sources

Birmingham VNA Caregiver Recruitment.  The Visiting Nurses Association (VNA) of Birmingham is a nonprofit community service organization.  The VNA receives over 1200 new referrals per year.  It is estimated by the VNA staff  that at least 50% or 600 of these admissions are elderly individuals suffering from dementia; 85% (500) of these live with a family caregiver within a 50-mile radius of Birmingham. Approximately 60% of these individuals are African American. Our choice to expand recruitment beyond the university setting was based on two factors.  First, accessing the VNA population facilitates our recruitment of a larger number of African American caregiver-care recipient dyads.  Second, the RFA states explicitly that every effort should be made to recruit dementia patients with mild to moderate cognitive impairment.  Although UAB's ADC has a very successful track record of recruiting African American caregivers and care recipients, African American dementia patients seen at our ADC present primarily with moderate to severe dementia.  Recruiting through the VNA  allows access to more African American care recipients with mild to moderate dementia.  In addition, it broadens our pool of potential participants to include families who do not seek specialized dementia evaluations for their relatives.

Alzheimer’s of Central Alabama (ACA).  ACA is a community-based, nonprofit organization serving Alzheimer’s patients and their caregivers.  ACA provides direct services to AD patients and their caregivers, provides numerous educational opportunities for family and professional caregivers, funds small university-based research projects, and advocates for AD patients and caregivers on the local and state level.  Hundreds of REACH brochures have been distributed at ACA events and through their direct mailing.  The REACH project is featured in all ACA  newsletters.

Recruitment and Advertising Leading to Self-Referrals

Health Fairs.  In our area, churches and civic organizations commonly host health fairs to inform people in the community of products and services.  During such events, REACH has been present to disseminate information about the project by talking with people, handing out flyers and brochures, and distributing REACH magnets.

Speeches/Talks in the Community.  Churches, support groups, adult day-care centers, civic organizations (i.e., Civitan International), neighborhood associations and community health organizations have asked REACH staff to present the project to their respective groups.  These talks generally consist of a brief description of Alzheimer’s Disease, the accompanying behavior problems, and the burden placed upon families and especially on caregivers.  With this background, REACH is discussed in more detail and brochures are distributed to the audience.

Newspaper Ads. Advertising for REACH in newspapers has been done in three ways.  First, PSA’s have been used extensively in smaller local papers such as The Community Messenger, Medwise, and The Birmingham Times.  Second, articles have been written in community newsletters that describe the REACH project and give the number to call to inquire for more information.  Third, we have purchased advertising space for a REACH ad in local daily newspapers.  These ads have yielded a large proportion of participants enrolled in recent cohorts.  This method proved to be very effective in reaching people not served by our recruitment sites.

Radio and Television Coverage. The REACH project has been featured on numerous radio talk shows and on local and national television news shows.  Drs. Burgio, Stevens or Guy have all served as “guest” on local radio talk shows providing general information about AD and specific information on the REACH project.  Television coverage has been similar in format. One story interviewed a REACH subject who expressed her satisfaction with our program. Nationally broadcast news stories featuring the REACH project have appeared on CNN and Headline News.

Mail Outs. During National Alzheimer Month (November), we distributed packets of material to 40 area churches.  The packet included an introductory letter about Alzheimer’s Disease and how we can help, the national prayer for those suffering due to the disease, and our REACH brochure.     REACH materials have been sent to all of the adult day cares centers in the area, with an introductory letter describing the project, and REACH brochures to be displayed in the centers.  We have also mailed REACH materials to selected physicians serving the Birmingham area. 

Entry Criteria

The entry criteria for caregivers and care recipients at the UAB site meet those determined by the REACH Sampling and Recruitment Working Group.  The UAB site has three additional entry criteria.  Care recipients must display clinically significant behavioral disturbances, defined as a caregiver’s report of at least three problem behaviors.  A secondary caregiver who has a minimum of two hours of contact weekly with the caregiver must be available.  Participants must identify their primary racial group as either Caucasian or African American.

Time line for Entry of Caregiver/Care Recipient Dyads into Conditions

We estimate that a total of 140 caregiver/caregiver dyads will enter this study.  The dyads will be equally divided into the two conditions: Skill Training (n=70), and MSC (n=70). Using a 15% drop out rate, 60 subject dyads per group should complete 12 months, and 54 should complete 18 months.   Subjects will enter the study during months 12-51 of the project, which corresponds to the calendar dates of September 16, 1996 through May 31, 1999. 

The study sample will enter the study through 13 cohorts.  New cohorts are created every 12 weeks.  A minimum of ten CR/CG dyads compose each cohort.  The start date for each cohort reflects the beginning of the Telephone Screen activity, which also signifies the second, and last, Bi-weekly Home Visit and the 2-Month Assessment for the preceding cohort.  Cohort start dates have been adjusted to reduce conflict with religious and national holidays.

Current Subject (Caregiver) Accrual

As of June 1, 1999, we have entered a total of 140 caregivers and their care recipients into the study.

Subject Retention

Participation is encouraged in two ways.  First, caregivers have regularly scheduled contacts with the same interventionist throughout the course of the study, regardless of intervention condition.  It is hoped that such rapport building will facilitate the desire to stay in the study.  Second, caregivers receive Bereavement, Holiday, and Get Well cards from the REACH team.  Special effort is made to consider the religious and cultural backgrounds of participants.  For example, we do not send birthday or holiday cards to people who are Jehovah’s Witnesses.

As of June 1, 1999, the status of some participants has changed due to: 1) death of CR ; 2) placement of the CR into a long-term care setting, or 3) inactivation of participant (i.e., death of CG, CG declined further participation, CG unavailable for interview).  Change in CG status may result in the use of the Bereavement or Placement follow-up battery or in complete discontinuation from the project.  Information on the number of CG/CR dyads receiving either the Bereavement or Placement battery, or discontinuing participation at the six-month assessment point is summarized in the table below.

DATA COLLECTION

The study start-date was September 16, 1996.  A formal pilot of all experiment procedures and assessments was conducted prior to formal data collection.

Core, Semi-Core and Site Specific measures are administered at four time points; Baseline, 6, 12, and 18 months.  In addition to core measures collected by all REACH sites, we collect data to address specific components of our Skill Training and MSC conditions.  Two measures, the Functional Independence Measure (FIM) and a problem solving self-efficacy measure, are collected in conjunction with other REACH sites that share similar intervention programs.  The FIM is completed at the Alabama, Tennessee, and Philadelphia sites.  The self-efficacy measure is completed at the Alabama and California sites.  The Alabama site-specific measures include: the SDAT-Screener (a diagnostic interview used by a physician to establish a dementia diagnoses), the Desire to Institutionalize Scale, and the Affect Rating Scale (caregiver-care recipient interactions are videotaped for later scoring).  At the Alabama site, we also have a secondary caregiver complete the Revised Memory and Problem Behavior Checklist at core data points.  Also at each home visit, Behavioral Logs are collected on both caregiver goal behavior and care recipient behavior.  

DATA MANAGEMENT AND ANALYSIS

Quality control procedures for both core and non-core data include case and form checks, data verification, type and range checks, reports for missing data and edits, intra-and-inter-form logical consistency checks, data security, and disaster recovery.  Double data entry is used for both core and non-core data.  Non-core data are entered into SPSS Data Entry II Database.

In general, statistical analyses will involve repeated measures multivariate analysis of variance with between-subjects factors of Group (Treatment/Comparison Group) and Race (White/African American).  Preliminary analyses will be conducted to assure that assignment to group has been successful in assuring that subjects in the Skills Training and Minimal Support conditions have balanced pre-treatment characteristics, as should be the case given the minimization technique.  Pre-treatment differences by Race will also be explored and considered closely in subsequent interpretation of treatment outcome data.

The success of the intervention will generally be indicated by significant Group x Time interaction effects.  Differential effects of intervention by race would be indicated by Group x Race x Time interaction effects.

INTERVENTION PROTOCOL

Two interventions will be compared in this study: Skill Training and telephone-based Minimal Support.

Skill Training Condition

This intervention package 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 choose other problems.  The Skill Training group participates in a 3-hour group workshop.  Caregivers are provided with a skill training manual and videotapes, which demonstrate critical skills. Additional educational materials are provided (See MSC description).   Fine-tuning of behavior management and self-management skills, and implementation of individualized caregiver and care recipient-focused behavioral programs is accomplished during home visits.  Also during the Home visits, Interventionists observe the caregiver and care recipient while interacting in a social activity.   This latter intervention component serves two primary functions: 1) it provides an opportunity to further customize skill training, and 2) it provides an opportunity to videotape the caregiver for later coding with the Affect Rating Scale.   Caregivers are asked to complete the Behavioral Log on a daily basis throughout the 18-month study period.  This task is made simple with use of the Behavioral Log.

Minimal Support Condition

The telephone-based Minimal Support Condition (MSC) provides telephone support on the same schedule as the home visits in the skill training group.  Telephone support is supplemented with printed educational materials on AD and related disorders, and caregiving issues.  The purpose of the MSC is to provide researcher contact and support to form a face-valid minimal intervention that will discourage differential drop-out between the more active intervention (Skill Training) and this comparison condition.  The support provided by the Interviewer is minimal, consisting of active listening and empathic comments when appropriate.  In these comments, the Interviewer neither makes recommendations nor provides additional information on dementia.

ANCILLARY/PILOT STUDIES

Ancillary Studies

Two ancillary studies are being conducted.  As a dissertation project, Tricia Wessel-Blaski is conducting a micro-analysis of CG and CR behaviors displayed during therapeutic interactions with REACH interventionists.  Her project is entitled, “Direct Observation of Dementia Caregiving Interactions: Does Skill Training Influence Quality of Life”.  Ms. Wessel-Blaski is currently piloting a system for formal coding of the videotaped interactions between CGs and CRs.  Although pilot work is being conducted, none of the videotaped data have been formally coded. 

The UA REACH project is serving as a valuable learning and research experience for Dr. Linda Davis.  Dr. Davis recently received a Mentored Research Scientist Development Award (MRSDA) from the NINR.  Dr. Davis is working with the UA REACH team to gain first hand knowledge and experience in the REACH comparison condition, the Minimal Support Condition (MSC).  The MSC is a telephone-based intervention similar to that used by Dr. Davis in her project entitled, “Two Methods of Family Caregiver Skill Training”.  To date, Dr. Davis has enrolled 23 CG/CR dyads into the research protocol.  Her goal is to enroll 63 dyads.  The first cohort has completed the intervention and shortly will participate in the second of three assessments.  Findings from this study should contribute to the knowledge of methods of delivering skill-training interventions to rural family caregivers.

Pilot Study

Seven subjects were entered into our pilot study. Of this number, one subject failed to complete the core baseline battery, and a second subject asked to be excluded after several weeks of calls in the Minimal Support Condition. Both of these Caregivers were female. Of the remaining 5 dyads, 3 were African American and 2 were White.

The pilot project focused on the development and implementation of behavioral programs to address CR problem behaviors identified by the CR.   We created behavior programs to address problem behaviors using the following techniques: distraction, orientation picture books of personal photos, a bulletin board for the dyad to use as a memory aid, reminder identification cards made like business cards to carry in the wallet, and detailed communications skills training.

The pilot study also assisted caregivers with the definition of personal goals that were addressed using problem solving techniques. One caregiver laid plans to have others stay with his wife while he was away from home. Another used these skills to complete construction of a room in her home -- a project that had languished for some time. One caregiver began an exercise program, and another researched day care centers in the area for future use. Upon completion of her research, this CG decided to use one of the centers she had found.

The piloting experience was invaluable to our project and staff for many reasons.   Conducting the pilot allowed our team to address numerous issues of critical importance to the overall project.  First, piloting allowed us to review issues related to subject referral, recruitment and retention.  More specifically, telephone screening gave us data on the number of CG referrals who would be eligible for the study, and we experienced two “drop outs”, which allowed us to begin to identify ways to maximize retention.  Second, the entire team gained experience in applying the therapeutic techniques with caregivers and care recipients.  This experience included the process of identifying care recipient and caregiver goals, developing behavioral programs, tracking caregiver and care recipient progress, and developing and revising our filing system.  Third, we fine- tuned the workshop experience, from presentations and videotaping to providing refreshments and determining the length of breaks.

UPDATE ON RELOCATION OF REACH TO UA AND ESTABLISHMENT OF THE REACH UAB SUBCONTRACT

In year four, the REACH project was relocated to the UA Alabama with clinical activities subcontracted to UAB.  Alan Stevens, Ph.D., serves as PI of the Birmingham subcontract. Drs. Stevens and Burgio have a 5-year history of close collaboration on REACH and other NIH funded projects.  Dr. Burgio has maintained adjunct appointments at UAB and is provided dedicated office space at both the UA and UAB campuses.

In continuation of the REACH operating procedures established in the first three years of the project, the PI, Co-PIs, Co-investigators and research staff have conducted weekly team meetings attended by staff from both UA and UAB sites.  Clinical activities have been unchanged in year four.  Dr. Burgio continues to chair the weekly clinical meeting in which case files of all REACH participants are reviewed.

The data entry and management core, along with the dedicated REACH computer and printer, are located on the UA campus in Tuscaloosa. All data entry management and analyses are conducted at UA. All hard data is maintained in Tuscaloosa (clinical files remain at UAB until the participant completes the 18-month assessment). Completed data forms are hand-carried from Birmingham to Tuscaloosa on a weekly basis.

Safe and timely delivery of data forms to the UA site is of highest priority.  Data transmissions are coordinated and conducted by the UA data entry coordinator, Ms. Fargason, and UAB project coordinator, David Vance.  Dr. Burgio oversees the data transmission process.  To facilitate transition of data and data entry, Ms. Fargason spends one morning per week at the UAB site, this meeting coinciding with the weekly REACH team meeting.  During Ms. Fargason's visits to UAB, she 1) delivers data forms, 2) completes data tracking forms, 3) reviews data forms with Mr. Vance, 4) conducts individual meetings with the REACH interviewers regarding data entry questions, 5) enters treatment fidelity information filed at UAB, and 6) reviews other data concerns during REACH team meeting.  Following meetings at UAB, Ms. Fargason hand delivers data forms to the data entry office in Tuscaloosa. 

It is the PI’s opinion that from both a scientific and a practical prospective, this arrangement results in a seamless transfer of data from Birmingham to Tuscaloosa, and that subject recruitment and clinical activities have not been adversely affected by the transfer of the REACH project to UA and the establishment of the UAB subcontract.

PRESENTATIONS AND PUBLICATIONS

Burgio, L. D., (1996, November).  Skill training for African American and White caregivers.  Symposium presented at the 49th Annual Scientific Meeting of the Gerontological Society of America, Washington, D.C.   

Burgio, L. D., (1997, May). Skill Training for African-American and White caregivers. In Resources for Enhancing Alzheimer’s Caregiver Health (REACH): Innovative Approaches to AD Caregiving Interventions. Presented at the 1997 annual meeting of the American Geriatrics Society and American Federation for Aging Research, Atlanta, GA.

Stevens, A. B. & Burgio, L. D. (1998, August).  Geropsychologically Based Training for Caregivers of Patients With Alzheimer’s Disease.  In D. S. Glenwick (Chair), Teaching Clinical Geropsychology to Traditional and Nontraditional Populations. Symposium conducted at the annual meeting of the American Psychological Association, San Francisco, CA.

Cotter, E. & Burgio, L. D.  (1999, May).  Correspondence of the functional independence measure (FIM) self-care subscale with real-time observations of dementia patients-ADL performance in the home.  A doctoral dissertation.

Related Publications and Presentations

Burgio, L. D., Wessel, T. B.  Monahan, A., & Stevens, A. B. (1997).  Behavioral approaches to training family members as caregivers.  Manuscript in preparation for Behavioral Approaches to Gerontology, M. Mathews & V. Adkins, (eds.), Greenwood.

Stevens, A. B. (1997, March).  Strategies for managing the behavioral symptoms of Alzheimer’s disease.  Invited lecture, Internal Medicine Grand Rounds of the University of Tennessee College of Medicine - Chattanooga Division, Chattanooga, TN.

Burgio, L. D., (1998). Effective interventions for decreasing dementia-related

challenging behaviors. In, What works in dementia care? Symposium conducted at the University of Stirling, Stirling, Scotland.

Burgio, L. D., (1998, September).  Psychosocial treatment of behavioral complications of DAT.  Invited lecture, First International Research Symposium on Behavioral Aspects of Alzheimer’s Disease and Related Dementias, Garden City, NY.

Stevens, A. B. (1999, March). Skill Training for Caregivers.  In L. Gitlin (Chair), Caring at Home: Supporting the Efforts of Family Caregivers and Alzheimer’s Patients. Workshop presentation in conjunction w