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 with the 45^th Annual Meeting of the American Society on Aging, Orlando, FL.

Burgio, L. D., (1999, May).  Application of psychosocial interventions for treating BPSD.  Invited address.  International Pychogeriatrics Association.  Update conference on Behavioral and Psychological Symptoms of Dementia.  Landsdown, VA.

HEBREW REHABILITATION CENTER FOR AGED,

RESEARCH AND TRAINING INSTITUTE

TLC Telephone System for Alzheimer’s Family Caregivers

REACH Progress Report

July 1999

Diane Mahoney, Ph.D., Principal Investigator

GOALS OF THE STUDY

The primary goal of this study is to assess by means of a multi-site randomized controlled feasibility study, the effect of the Reach for TLC system on reducing manifestations of caregiver stress associated with the home management of persons with Alzheimer’s Disease. Prior research studies have highlighted the importance of family caregiving and the demands faced by families, especially the primary caregiver. Our aim is to adapt existing telecommunication technology to provide new service options for the primary caregiver to help them manage Alzheimer related problem behaviors. The Reach for TLC system is a Telephone Linked Computerized system that gives caregivers access to a four-part intervention through their normal telephone. Caregivers can post messages on a caregivers voice mail bulletin board or send them to each other, they can access a geriatric nurse specialist for assistance and to get a second opinion from our panel of professional experts in AD, they can call into our Activity/Distraction telephone conversation which is designed to conduct an 18 minute individualized conversation with the CR, and finally they can report problems and receive information during a weekly conversation that monitors CG stress.

The focus of this study is to determine the acceptability and utilization of a technology based intervention by AD caregivers. Specific site objectives relate to determining the 1) feasibility of the system to function as a distraction telephone call for caregivers to use to mitigate the care recipient’s agitation, or when they would like a “mini-respite” break; 2) acceptability of, and satisfaction with the technology and components of the system; 3) maintenance of effect; and the 4) cost-effectiveness of the Reach for TLC system.

This study makes several unique contributions to the research field since it is the first application of Interactive Voice Response (IVR) telecommunication technology to the field of AD caregiving intervention research. The innovative technological aspects are: 

Ensuring access to technology for the disadvantaged.  Those without the economic, educational, or personal computer resources to use the internet information superhighway can gain access to some of the features such as asynchronous chat groups through the ordinary home telephone.

Identifying user needs of older adults.  The field of informatics targets younger adults as the prime audience. Technological developments specifically targeted to older adults are still rare, and user evaluation of standard features even rarer. Response to our system will inform other developers so that future programs can include more geriatric user friendly systems.

Demonstrating the integration of technology into a variety of primary care and Alzheimer’s community based caregiving programs.  This program is designed to complement and hopefully enhance existing usual care practices. The ability to test its feasibility in a variety of settings supports the efforts to adapt technology to address real world issues in contemporary practice.

RECRUITMENT AND RETENTION

Intensive recruitment activities resulted in 143 referrals to the project, of which 118 people were eligible.  A total of 100 persons were enrolled, a 70% yield.  The total recruitment cost was $10,127, an average of $101 per participant.  The sample was generated over a 22-month period, with an average of just under 5 people per month.  Despite vigorous recruitment activities during the entire field period, unexpected barriers arose that blocked achievement of projected enrollment goals.   Recruitment efforts were halted September 30, 1998 when it became obvious that the initial recruitment goal would not be met.  This study is now envisioned as a feasibility study to determine factors affecting use of technology and its outcome.

Our recruitment effort included the implementation of three distinct recruitment procedures at a variety of referral sources.  Fieldwork began at a large academic medical center, the first of five sites initially secured during the planning stage of the project.  Enrollment was closely monitored and lower than expected enrollment rates were apparent as early as four months into the recruitment phase.  The field team moved sequentially to the other agencies.  A recruitment coordinator was identified and intensive efforts were begun to identify and enlist the cooperation of additional sites.  A total of 13 agencies were secured.   These agencies agreed to formally refer participants, meaning they would identify potential subjects, introduce the study to them and make out and send to the researchers a completed referral form.

Resistance to cooperation with the referral process was detected and steps where taken to identify and remove barriers.  Many sites resisted cooperation claiming that making referrals was too costly to do.  The referral process was then streamlined, made simpler and less burdensome.  This mediated process was essentially a self-referral process.  The sites agreed to introduce the study to their patients/clients and provide them with literature that included a self-referral form. These sites were generally small, such as adult day care centers, with two exceptions.  A total of 67 additional referral sources agreed to cooperate with the study using this method, which resulted in 15 additional participants.

Community directed promotional activities were instituted before and during the recruitment phase.  Nine different kinds of promotional strategies were implemented, producing 12 additional participants.  Radio and newspaper public service announcements, brochures and posters were used to announce the project before hand and over the entire recruitment period to keep the project visible in the community.  Additional strategies were implemented as the rate of enrollment continued to fall below expectations.  These efforts included: paid newspaper announcements, employee newsletter, direct mailings, e-mail to a physicians professional e-mail group, development of a project Web site and the use of recycled study names.  A Recruitment Manager and Assistant were employed to assist with community directed promotional activities. 

The following outreach and recruitment activities were undertaken:

1. Community presentations

2. Mailing of study flyers to registered voters in Brookline, Cambridge, and Boston (8,000).

3. Mailing of informational packets about the study to Alzheimer’s Association of Eastern Massachusetts support group leaders (68).

4. Outreach to the Multicultural Coalition on Aging

5. Workshop presentation at the Alzheimer’s Association Professional’s Conference

Approximately one third of the presentations were made to senior groups in predominantly African American neighborhoods of Boston including the AARP Roxbury Chapter, Freedom House Goldenaires, 12th Baptist Church Senior Group, Wallingford Road Senior Housing, and Leisure Towers, Lynn.  Study flyers were mailed to selected zip codes targeted to those neighborhoods with high concentrations of minority groups.  (See list of presentations for their specific contributions to the recruitment effort.)

The Multicultural Coalition on Aging, an ad hoc group of more that 40 agencies serving diverse elders in the city of Boston, meets monthly to plan programs, network, and review research initiatives. Information about the REACH Study was distributed to members of the Coalition for their clients. This potentially reaches more than 10,000 people.  In addition, R. Rosebnerg has assisted the establishment of a Research Subcommittee of the Coalition, whose purpose is to create an agency registry to facilitate recruitment in the future.

A total of 68 support group leaders received informational packets about the REACH Study.  All group leaders were later contacted for follow up by the Recruitment  Coordinator, B. Tarlow asking to make an in-person presentation or at least encourage the dissemination of the information packets.  Due to the low response by these support group leaders, a concentrated effort is under way to refine the Association’s ability to support research through information dissemination about studies. A permanent Research Review subcommittee is being formed which will review proposals wishing to recruit from among the Association’s clients.

The project was negatively impacted by changes in both the local and national health care environment.  Everywhere health care costs have grown exponentially with technical innovations, insurers are reluctant to reimburse for experimental treatments and the health care provider institutions are carefully weighing the burdens and benefits of cooperating with research.  In Boston 2 of the original 5 referral sites merged, resulting in a moratorium on new admissions to the clinical services from which participants would be drawn.  The staff downsizing that accompanied the merger meant another round of negotiations and networking with reassigned staff.  Tensions associated with the merger created a defensive and competitive climate among clinicians, reducing the number of referrals.  The competition seen intra-agency was repeated in the larger community. The Boston staff frequently met with unresponsive large agencies, who were protecting their own access to patients and clients for studies, while small agencies retreated from engagement due to being overwhelmed with research requests. 

Entry Criteria

The entry criteria for caregivers and care recipients met those determined by the REACH Sampling and Recruitment Working Group. The Boston site had 5 additional site specific exclusion criteria that were liberalized as indicated by [comment]*:

1.      Total deafness or any auditory impairment that prevents telephone  use  [Only for the CG; if CR is deaf we will accept]*

2.      No touch tone telephone service  [We will pay for a year’s service]*

3.      Absolute refusal by the CG to involve CR in the intervention (such as refuses to let CR use the telephone, which excludes use of the Activity/Respite CR telephone call)  [Eliminated]*

4.      CG does not identify any problematic behavior by the CR

5.      Lives greater than 60 miles from Boston  [increased to 80 miles; interviewer available for the western part of Massachusetts, southern New Hampshire and northern Rhode Island.]*

There are no gender or ethnic group exclusions.

Final Subject Accrual

Subject Retention

Those in the intervention group receive computer generated phone calls on their birthday offering a personalized best wishes, they receive motivating messages every three months during the course of the intervention. Control group participants receive a mailed birthday card. Both groups received a project newsletter that was developed as a marketing tool to maintain their commitment to participation. At each interview point, subjects receive a gift of a magnetic memo board, key ring, telephone memo pad, and refrigerator magnet with the REACH logo on it.

Arrangements have been made to conduct CG interviews during the day or evening hours including weekends according to the needs or preferences of the caregivers. Every effort has been made to minimize any subject burden to promote continuation in the project. The field staff have responded in a very positive manner to numerous changes in home visit appointments and readily adapted to requests for early, late, and weekend home visits for the baseline data collection.  We anticipate these similar efforts will be needed for the additional data collection points.

As of June 1, 1999, five participants have discontinued participation in the study for the following reasons:  One caregiver reported that it was too emotionally draining to continue after the death of the care recipient, one caregiver relocated to Puerto Rico, three caregivers declined to continue because they saw no benefit since the care recipient had been institutionalized.

DATA COLLECTION

Individual study participants are followed at six-month intervals throughout an 18-month data collection period. Project data collection commenced in November of 1996. The initial baseline interview is conducted in the home to obtain written informed consent and to permit training on the TLC system to those randomized to the TLC intervention. Thereafter, data collection occurs by telephone interview at 6 months, 12months, and 18 months. Interviewers request that the participants not mention their group assignment.  Data collection measures at T6 do not identify TLC-AD use.  At T12 the TLC-AD user satisfaction survey will be administered.  This will be conducted at the end of the telephone interview to minimize interviewer bias.  All subjects end participation after the 18-month telephone interview. The New England Research Institutes (NERI) is responsible for the field work and data collection.

Every subject is asked the core measurement and site specific battery of questions. Boston site-specific non-core measures include:

Role Captivity (Pearlin) Role Overload (Pearlin), Caregiver Competence (Pearlin), Management of Situation (Pearlin), Mastery (Pearlin), Activity, (Pearlin), and items on Caregiver Health Counseling, Occupation and Income, Health Insurance Coverage and CG preference for assistance.

In addition, the following information is collected only during one measurement period. At baseline: Caregiver height, weight, medication usage, and CR medication usage. Post-intervention  Satisfaction with information (both groups) and the Users evaluation of the TLC system (intervention group only).

The TLC data system and Octel voice mail system provides utilization data for all computerized aspects of the TLC intervention throughout the entire intervention period.

DATA MANAGEMENT AND ANALYSIS

Data management is under the purview of the New England Research Institutes. The site follows core data management protocols as developed and parallel their use for the site level data. NERI follows their standard procedures, which include: Maintenance of contact records for all participants; Use of a log to ensure that all data items have been completed for each participant; Central data editing and processing; Maintenance of cumulative production statistics and; Use of a back-up database system. Their Database Manager has been trained by the Coordinating Center in the use of the POP system. Double data entry is used for both core and non-core data. Non-core data is managed using Foxpro and converted to SPSS for windows for data analysis.

Overview of Analysis Plan

The primary evaluation will focus on the comparison of the TLC-AD and UC/control groups at the 12 month follow-up, which corresponds to the end of the intervention period.  Additional data from the 6-month follow-up will give us information about initial effects of the TLC-AD system, and will allow us to compare utilization of the system from the first 6 months to the second 6 months of intervention.  Additional data from the 18-month follow-up, 6 months after the end of the intervention period, will allow us to look for possible carry over effects of the TLC intervention.

The analysis plan for this study will consist of four stages.  First, preliminary analyses will look at study enrollment, randomization, and loss to follow-up.  Also, the distribution of study variables will be examined to determine the need for data transformation or recoding.  The second stage of analysis will compare the TLC and UC groups on the primary study outcomes of stress and the manifestations of stress at the 12-month follow-up.  The third stage will examine mediating and process variables to better understand how TLC impacts stress and the manifestations of stress.  These analyses will include data from the 6 and 18-month follow-ups.  Finally, the fourth stage of analysis will examine the secondary aims of describing the trajectory of CGs’ needs over the study period, and examine factors related to the use and acceptance of TLC-AD.

INTERVENTION PROTOCOL

There are two groups participating in this study, one the intervention group which receives the telephone based REACH for TLC system intervention, and the other a control group which receives usual care.

Intervention Group - REACH FOR TLC

CGs randomized to the intervention group receive training on how to use their telephone to access the TLC system. The TLC system offers four components that provide options to meet diverse CGs needs over time.

CG monitoring and Counseling Module. Once a week CGs call into Reach for TLC and it queries CGs about problematic behaviors exhibited by their CR. If none are detected, the CG is reminded about the other system options, given a choice to switch to them or end the conversation. If problematic behaviors are detected, the program branches to offer information about strategies to reduce them. If over a two-week period, the CG reports increasing stress and or CR behavioral problems, a computer generated alert will be sent to the AD site liaison. If this continues in week 3, the system triage nurse is alerted to follow-up with the site liaison.

CG Voice Mail Bulletin Board. Designed to be an in-home support group,

any CG can anonymously ask all participating TLC CGs a question about caregiving issues or offer advice in response to questions by other CGs. They can also send and receive personal messages to others on the system through their individual mailbox.

Ask-the-Expert Module. CGs can call into the triage nurse’s voice mail and leave a question for her or the experts. The nurse specialist will monitor this line and either respond directly or triage the call to the appropriate expert on our Advisory Board and ensure that the questions are answered in a timely manner.

Activity/Distraction Module. This is an 18-minute conversation designed to engage the person with AD in a simple non-demanding conversation designed to distract the person from disruptive behavior. The conversation is individualized and uses the CR’s name and fosters the recollection of favorite memories such as favorite activities, people, flowers, foods, and holidays. The system starts when the CG calls in and tells the CR that the telephone call is for him/her and presses 1 on the touch-tone telephone keypad. The conversation is designed to proceed even if the CR does not verbalize any responses. For non-verbal users, strategically placed timed pauses allow the conversation to continue in order to keep their attention. For verbal users, as soon as they respond, the system proceeds to the next conversation point. The system will also adapt if a verbal user then changes to a non-verbal one, then the paused timing feature is automatically implemented.

Caregivers can access the REACH for TLC system modules 24 hrs a day.

In addition, CGs will continue to receive the usual care and services provided through the AD site that referred them to this project.

Control Group - Usual Care

CGs randomized to the control group will be given a resource guide that contains similar information to that available in the REACH for TLC CG’s Monitoring and Counseling Module, only in written format, not via the TLC system. They will continue to receive the usual care and services provided through the AD site that referred them to this project. At the completion of their 18 months participation, the control group will be offered a six-month use of the TLC respite call.

ANCILLARY/PILOT STUDIES

REACH Ancillary study

Brooke Harrow, Ph.D., Boston site senior investigator is completing the second year of her NINR funded study: Cost Impacts of Enhancing Alzheimer's Disease Caregiving.  Dr. Harrow has begun collection of intervention cost data from the Boston and Miami sites.  She has also begun analysis of the cost of community care for care recipients and caregiver health service use using baseline Boston site data.

Administrative supplement

Barbara Tarlow Ph.D., project director has been working on the Boston site Recruitment Cost Analysis. The purpose of this study was to examine the cost and outcomes associated with multiple recruitment strategies used to enroll participants in an Alzheimer’s disease caregiver study.  This study funded for two years, was designed to study the recruitment activities at the Boston research site.  The recruitment activities of the parent grant have ended and the cost data has been collected.  Analysis of the cost data reveals that the cost of recruiting one Alzheimer’s disease caregiver is $101.  The total project recruitment costs were $10,127: $7,618 in personnel costs and $2,509 in materials.  The higher personnel costs accurately reflect the long and many layered process of identifying appropriate referral sites and gaining their cooperation.  Three recruitment methods evolved during the recruitment phase, each method having its own advantages and costs.  Clearly the most effective recruitment method was to formally recruit at clinical sites with large pools of potential participants.  The results of the cost analysis have been presented at the annual meeting of the Gerontological Society of America in November 1998, Philadelphia, PA.  An article reporting these findings has been written and submitted to the REACH Publications and Presentations Committee for approval for journal submission.

PRESENTATIONS AND PUBLICATIONS

Presentations:

Mahoney, D. The REACH Initiative.  Hebrew Rehabilitation Center for Aged.  Research in Progress presentation, June 16, 1999.

Mahoney, D.  Using technology to help Alzheimer’s caregivers.  Alzheimer Association of Eastern Mass.  Map Through the Maze, Interdisciplinary Conference for Professionals.  May 12, 1999.

Tarlow, B. and Mahoney, D.  The high cost of recruitment.  Poster session, Alzheimer Association of Eastern Mass.  Map through the Maze, Interdisciplinary Conference for Professionals. May 12, 1999.

Mahoney, D.  A content analysis of website discussions by Alzheimer’s family caregivers. American Society on Aging 45^th Annual Meeting, Orlando, March 3-7, 1999.

Mahoney, D.  A computer-mediated intervention for Alzheimer’s caregivers.  Workshop: Supporting the Efforts of Alzheimer’s Caregivers Through Technology: A Description of Three Technology-based Interventions of the REACH Project. L. Gitlin, S. Czaja & D. Mahoney. American Society on Aging. Conference on June 30, 1998.

Mahoney, D.  Using a website for qualitative gerontological research: Issues and recommendations. Gerontological Society of America 51^st Annual Scientific Meeting. Philadelphia, Nov 20-24, 1998.

Harrow, B., Mahoney, D., Czaja, S., & Eisdorfer, C.  A plan for cost-effective analysis of interventions designed to enhance family caregiving for Alzheimer’s disease.  Gerontological Society of America 51^st Annual Scientific Meeting.  Philadelphia, Nov 20-24, 1998.

Mahoney, D. and Tarlow, B.  Computer-mediated intervention for Alzheimer’s caregivers, REACH for TLC (Telephone Linked Care). Gerontological Society of America 51^st Annual Scientific Meeting.  Philadelphia, Nov 20-24, 1998.

Mahoney, D., Mezey, M. and Zurakowski,T. Nursing special Interest Group Symposium:

In Pursuit of Life, Liberty and Happiness for Older Adults: Challenges and Opportunities for Nursing. Gerontological Society of America.  Nov. 21, 1998, Philadelphia, PA.

Tarlow, B. and Mahoney, D.  Poster Session: Identifying Cost Effective Recruitment

Strategies for Research Participation by Alzheimer’s Disease Caregivers, Gerontological Society of America.  Nov. 21, 1998, Philadelphia, PA.

Mahoney, D.  Tailoring technology to Alzheimer’s caregiving. Western Massachusetts Alzheimer’s Association Annual Conference, Nov 4, 1998.

Mahoney, D.  Technological tools for Alzheimer’s caregivers. HRCA Alzheimer’s Symposium, October 2, 1998.

Harrow, B.,  Mahoney, D., Czaja, S., & Eisdorfer, C.  Cost-effective approach to cost-effective analysis of interventions designed to enhance family caregiving for Alzheimer’s Disease. Association for Health Services Research, Washington, D.C., June 22, 1998.

Mahoney, D.  Reach for TLC (Telephone-Linked Computer). Can technology help Alzheimer’s caregivers manage disruptive behaviors?  REACH Symposium -Resources for Enhancing Alzheimer’s Caregiver Health (REACH).  R. Burns , L. Burgio and D. Mahoney. American Geriatrics Society Annual Meeting May, 1997.

B. Tarlow, D. Mahoney, & J. Sandaire.  Multi-media presentation,  REACH for TLC (Telephone Linked Care) 1997.  A Map through the Maze.  Alzheimer’s Association of Eastern Mass.  Interdisciplinary Conference for Professionals.  May 12, 1998.

Mahoney, D. Challenges of implementing a telecommunication based intervention: Technical and user issues. Gerontological Society of America 50th Annual Scientific Meeting, November 17th - 21st, 1997, Ohio.

B. Tarlow, D. Mahoney, & J. Sandaire. Multi-media presentation, REACH for TLC (Telephone Linked Care). 1997.  Massachusetts Veterans Administration Research Conference - Caring for Patients with Alzheimer’s Disease: Progress Through Knowledge and Caring. April 1997.

Mahoney, D. 1997  Nurse Practitioners Association for Continuing Education (NPACE) - New Models of Geriatric Care –Using technology in AD. (Keynote speaker )  March 15,  Boston MA.

Mahoney, D.  Reach for TLC (Telephone-Linked Computer). Can technology help Alzheimer’s Caregivers manage Disruptive Behaviors? Gerontological Society of America 49th Annual Scientific Meeting, November 17th - 21st, 1996, in Washington, DC. REACH Symposium -Innovative approaches to AD caregiving interventions, Marcia Ory, Ph.D., organizer.

Mahoney, D. 1996.  Responding to Alzheimer’s Disease in Primary Care.  Boston Medical Center, Internal Medicine Section Presentation.

Presentations by HRCA Recruitment Manager and Assistant

Rosenberg, R.  Caregiving Across Cultures. Alzheimer’s Association of Eastern Mass. Map Through the Maze, Interdisciplinary Conference for Professionals.   May 12, 1998.

Rosenberg, R. Issues in Minority Recruitment and Retention.  American Society on Aging.  Conference, June 30, 1998.

Rosenberg, R.  Research Roundtable: An opportunity to bring researchers and African American potential study participants together for discussion about research. Hebrew Rehabilitation Center for Aged. May 7, 1998.

Rosenberg, R. The Aging Brain. Senior Group at People’s Baptist Church, Roxbury, MA  March 24, 1998.     

Rosenberg, R. Research and Memory. American Association of Retired People, Roxbury, MA Chapter.  January 9, 1998.

Freeman, M. Research and Healthy Aging. Weeks House Senior Living, Newton.  January 6, 1998.

Freeman, M. Research and Healthy Aging. Casselman House Senior Living, Newton.  January 7, 1998.                       

Freeman, M. Research and Healthy Aging. Smith House Senior Living, Roxbury.  January 22, 1998.    

Freeman, M.  Research and Healthy Aging. Hale House, Boston, MA.  April 30, 1998.

Abstracts Under Review:

Mahoney, D.  Issues related to the use of a website for qualitative Research.  Abstract submitted for presentation: Gerontological Society of America, (Technology and Aging, Special Interest Group Sponsorship).  Nov. 1999, San Francisco.

Mahoney, D. and Tarlow, B.  Verifying technology training in the Reach for TLC project.  Abstract submitted for presentation: Gerontological Society of America, (Technology and Aging, Special Interest Group Sponsorship). Nov. 1999, San Francisco.

Tennstedt, S. and Mahoney, D.  Ethnic Differences in Social Support for Alzheimer’s Disease Caregivers.  Part of the REACH Symposium submission to Gerontological Society of America, Nov. 1999, San Francisco.

Mezey, M., Mahoney, D. and Zurakowski,T.  Geriatric Nursing Research Symposium, Sponsored by the Nursing Special Interest Group.  Nurses the Bedrock of Quality.  Gerontological Society of America.  Nov. 21, 1999, San Francisco.

Mahoney, D.  Using information technology to increase user’s knowledge about Alzheimer’s disease and caregiving issues. Abstract submitted for presentation: American Society on Aging.  March, 2000, San Diego.

Tarlow, B.  Reach for TLC (telephone linked care) system for Alzheimer’s family caregivers. Abstract submitted for presentation: American Society on Aging.  March, 2000, San Diego.

PUBLICATIONS

Mahoney, D., Tennstedt, S., Friedman, R. & Heeren, T. (1999) An automated telephone

system for monitoring the functional status of community-residing elders. The Gerontologist. 39(2) 229-234.

Mahoney, D.  A content analysis of an Alzheimer family caregivers virtual focus group. (1998). American Journal of Alzheimer’s Disease. 13(6) 309-316.

Mahoney D., Tarlow, B.& Sandaire, J. (1998) A computer-mediated Intervention for Alzheimer’s Caregivers.  Computers in Nursing, 16(4), 208-218.

Mahoney, D. (1998) Alzheimer’s Disease technology interventions for caregivers.  Brown University, Quality Advisor. 10 (11) 2-3.

Mahoney, D.  Book review: Carole-Lynn LeNavenec & Tina Vonhof.  (1996).  One day at a time: How families manage the experience of dementia.  Westport, CT. Reviewed for the Journal of Family Nursing.  1997; 3(1), 107-108.

Mahoney, D. Nurses can use technology for the underserved. (1997). The American Nurse, 4:5.

Friedman, R. Stollerman, J., Mahoney, D. & Rozenblyum, L. (1997). Virtual Visit: Using Telecommunications Technology to take care of patients.  Journal of the American Medical Informatics Association. 4:413-425.

Accepted for Publication:

REACH team book on caregiving research: R. Shultz, and M. Ory eds.  Intervention Approaches to Dementia Caregiving.  New York: Springer Publications.  Accepted for Publication 1999.

Tennstedt, S.  Chap 1. The extent and impact of family caregiving.

Tarlow, B.  Chap 4. The Pragmatics of implementing intervention studies in the community.

Mahoney, D. & Harrow, B.  Chapter 8, From intervention studies to public policy: Translating research into practice.

Publications Under Review:

Tarlow, B. and Mahoney, D.  The cost of recruiting Alzheimer’s disease caregivers for research.  Article to P & P, targeted journal: Journal of Aging and Health.

Related Media/Press Coverage:

Mahoney, D. Coming of Age.  Two part TV News series on Channel 5, Boston by reporter Janet Wu.  March, 2-3, 1999.

Mahoney, D. Alzheimer’s Disease.  On Call Magazine, interview and quotes.  Fall, 1999.

Awards:

Mahoney, D. National Library of Medicine, Medical Informatics Fellowship, June 1999.

THE UNVERSITY OF TENNESSEE – MEMPHIS

Providers and Alzheimer's Caregivers Together (PACT)

REACH Progress Report

July 1999

Robert Burns, M.D., Principal Investigator

GOALS OF THE STUDY:

The purpose of the Memphis PACT study is to examine which of three primary care-based interventions, varying in intensity, will be the most effective in relieving caregiver burden for those caring at home for relatives with Alzheimer’s disease and related dementia disorders.  Each caregiver-patient pair is randomly assigned to one of three interventions:  Information and Referral (Group A), Behavior Care (Group B), and Enhanced Care (Group C).  Group A, the least intensive and extensive intervention, simulates usual care of dementia patients in the community with general written information about dementia.  In Group B, the caregivers receive education sessions about behavior management of the care recipient, including problems such as ADLs and wandering.  In Group C, specific stress/behavior management for the caregiver (including such topics as anger, grief, and guilt) is provided in addition to the general information received by Group A and the care recipient behavior modification taught to participants in Group B.

The primary goal of the study is to reduce caregiver burden and stress.  The level of caregiver burden and stress should decrease from condition A to C.  Caregivers who participate in intervention Groups B (Behavior Care) and C (Enhanced Care) should experience lower levels of stress, burden and health care utilization (lower use of psychotropic drugs, fewer scheduled/ unscheduled medical visits, lower rates of institutionalization) compared to those caregivers in Group A (Information and Referral).

SAMPLE RECRUITMENT AND RETENTION:

The Memphis PACT group has elected, at the 24-month assessment, to offer all participants the opportunity to extend participation for a third year.  Participants from Group A who elect to extend participation for a third year are individually re-randomized to either Group B or C.

Recruitment Source

Our objective is to examine the feasibility of caregiver support within a primary care environment.  As a result, recruitment for the study was focused on patients and their caregivers who were enrolled in the primary care practices targeted by this study.  We enrolled 245 caregiver/patient dyads, exceeding our anticipated goal of 240.  Seventy-eight participants were randomized to Group A, 85 to group B, and 82 to group C.  Medical practices (geriatrics, internal medicine, and family practice) were our source for participant recruitment.

Recruitment of study participants was carried out in the medical practices in several ways.  These include:  referrals by physicians and medical staff in the primary care offices, medical records review by REACH Researchers of patients scheduled for a visit in the coming month, brochures sent to patients who were being followed in the study practices, information cards in the offices for people to fill out if they were interested in the study, and articles in practice/hospital newsletters.

Entry Criteria

The entry criteria for caregivers and care recipients were those developed by the REACH Sampling and Recruitment Workgroup.  There were no additional site-specific criteria.

Current Subject Accrual

We screened 434 participants and approximately 22.4% were ineligible.  Reasons for ineligibility were spread across the entry criteria.  The number of randomized participants as of 1 June 1999 is shown in the Table below.  As of the end of 1 June 1999, 159 six-month, 89 twelve-month, and 39 eighteen-month follow-up interviews have been completed for participants. 

Subject Retention

A number of incentives were offered to caregivers and to practices in exchange for their assistance and time and use of their facilities.  Caregiver incentives included a cash gift for each completed data collection visit, paid parking or nominal amount given for cab fare, and birthday and holiday cards for caregivers and care recipients. As of June 1, 1999, 14 participants had discontinued the study, see Table below.

DATA COLLECTION:

Data collection began October 10, 1996.  All data are collected at baseline, 6, 12, 18, and 24 months.  In addition to core measures collected by all study sites, we are collecting data specific to the PACT study.  One measure, the Functional Independence Measure (FIM), is collected in conjunction with some, but not all, study sites (“Semi-Core”).  The Memphis site-specific measures (“Non-Core”) include: Cantril Ladders for Global Health Satisfaction, Global Life Satisfaction, Global Social Activity, Global Perception of Burden, Global Depression and Global Anger; Rand General Well-Being Scale, revised; Cognitive Status (Perlin); Mastery (Perlin), Personal Gain (Perlin); Loss of Self (Perlin); Blood Pressure; Caregiver Timed Performance; and Intervention Cost Analysis.  Intervention measures include Enactment, Readiness, and Process of Care.

DATA MANAGEMENT AND ANALYSIS:

In the year since the last Progress Report, baseline core and non-core data for an additional 77 randomized and interviewed participants have been entered, verified, and cleaned, bringing the total to 245 participants.

In the previous year, the non-core data set was expanded to incorporate:  (1)  Process of Care data, including data on specific pamphlets and suggestions given to caregivers in Groups B and C, and caregiver readiness for acceptance of interventions, and (2)  Core data, such as measures of caregiver burden that are determined to be relevant for non-core analysis.

Data management and quality control procedures for Core data follow protocols developed by the Coordinating Center.  Core data are entered and verified in the POP entry system by the Data Manager, who is trained and certified in use of the POP system.  The Data Manager enters site specific data into an SPSS for Windows (v.7.0) data file.  Site specific data are verified immediately after entry of each case, by visual comparison of the SPSS spreadsheet with the hard data form.  Periodic range checks are also performed regularly.  These methods have been effective in maintaining an accurate non-core database; errors in non-core data are corrected by the Data Manager, and discussed with interviewers if necessary.  The Data Manager also carries out regular backup of non-core data to diskette. 

Descriptive analyses of baseline core and non-core data have been initiated for internal use.  Statistical analyses will focus mainly on comparison of outcomes between the three treatment groups, across the five data collection time points.  These comparisons will be made using repeated measures multivariate analysis of variance, with treatment group (Information/Referral, Behavioral Care, Enhanced Care) as a between-subjects variable.  Other between-subject variables will include Race and Sex of participants.  A significant Treatment x Time interaction is predicted, which would indicate the success of interventions.  In addition, the association between Process of Care variables and treatment effectiveness will be assessed.

INTERVENTION PROTOCOL:

A detailed protocol has been developed for each of the three intervention groups.  Complete details of the intervention protocol are presented in the PACT Intervention Manual of Operations.  This Manual is available upon request.  The interventions are:

Information and Referral (Condition A) 

The rationale for the information and referral intervention group is to simulate usual care of Alzheimer’s Disease patient in community based practices (control group).  The phone numbers to the local Alzheimer’s Association and other national Alzheimer’s resources and pamphlets containing general information about Alzheimer’s Disease and related memory disorders are given to the caregiver at the conclusion of the first visit.  The caregiver is provided a general information brochure regarding Alzheimer’s Disease and related health topics at each session.  The 8-10 informational brochures do not address behavioral intervention or stress management.

Behavior Care (Condition B)

In addition to the telephone number and general information provided to the information and referral group (Group A), the caregiver receives interventionist directed educational sessions about behavior management of the care recipient.  The rationale for this intervention is that through targeted educational sessions on how to manage the behavior problems of the care recipient, the caregiver will be better able to cope with these stressful situations.  The intervention focuses on care recipient behaviors including Activities of Daily Living (ADL) tasks as well as specific behavior problems such as aggressive behavior or wandering.  The interventionist meets with the caregiver at scheduled office visits and extends education sessions through phone calls between visits.  Supplemental phone calls that include interventions occur every two weeks between the baseline intervention and the three-month intervention.  After three months, caregivers are called once a month in the months that they are not seen in the primary care physician’s office until their 24-month visit.  The caregiver also receives behavior specific handouts to reinforce the specific in-person and phone sessions.

Enhanced Care (Condition C) 

The Enhanced Care intervention provides specific stress/behavior management for the caregiver in addition to the general information in Group A and the care recipient behavior modification of Group B.  The caregiver meets with the interventionist at scheduled primary care office visits.  The rationale for this intervention is that targeted educational sessions, which expand beyond behavior management to include instruction/education in intrapersonal efforts to change how the caregiver thinks or feels may reduce the emotional distress in the situation where the course of events cannot be changed.  The specific nature of the cognitive - behavioral skills training includes such topics or concepts as relaxation training and steps to utilize to help cope with negative thoughts and feelings.  Supplemental phone calls that include interventions occur every two weeks between the baseline intervention and the three month intervention.  After three months, caregivers are called once a month in the months that they are not seen in the primary care physician’s office until their 24-month visit.  The caregiver also receives behavior specific and stress management handouts to reinforce the specific in-person and phone sessions.

ANCILLARY/PILOT STUDIES:

Schaefer, A.  The Correlation of the Cantril Self-Anchoring Scale and the Screen for Caregiver Burden in Measuring Burden in Caregivers of AD Patients. (10-10-96-05/21/97). 

Investigator:  Counseling Psychology Doctoral Student, University of Memphis. 

Purpose:  Determine the utility of Cantril self-anchoring scales in measuring the experience of burden and related constructs in caregivers of Alzheimer's disease patients. Methods:  Study of 50 Caregivers of individuals with AD exploring the relationship between a Cantril self-anchoring scale of burden and the Screen for Caregiver Burden and Cantril scales and multiple-item scales of components of burden (including social activity, social support, life satisfaction, anger and depression). 

Results:  No significant relationship between the Cantril burden scale and the Screen for Caregiver Burden.  Significant relationships between Cantril scales and multiple item measures of social activity, social support, and depression

Conclusion:  For these three measures, a Cantril ladder, a one question visual scale can be used in place of multiple item scales.

Fichtel, J.  The Relationship between Caregiver Stress and Blood Pressure. (06/01/98 – 08/17/98). 

Investigator:  NIH Summer Medical Student Researcher Award.

Purpose:  Examine the relationship between perceived stress (as measured by depression and anxiety) associated with the caregiving role and one physiologic measure of health status (blood pressure).

Methods:  Eight REACH Caregivers and eight Non-Caregivers over the age of 50, female, not on blood pressure medication, were administered a standardized questionnaire of stress/burden including depression, anxiety, perceived health, life satisfaction, anger, social activities and well being and wore a 24-hour ambulatory blood pressure monitor.  REACH caregivers were administered the questionnaire by trained REACH interviewers and the non caregivers by the student investigator.

Results:  All differences (except anger) between caregivers and non caregivers were in the expected direction; with caregivers reporting more stress and showing higher average blood pressure readings than non caregivers.  However, none of the differences were statistically significant.  Three measures (average overall systolic bp, average systolic bp from 1PM to 10PM, and satisfaction with social activities) approached statistical significance.  Caregivers had higher average overall systolic blood pressure and average systolic blood pressure from 1PM to 10PM compared to non caregivers. Caregivers also had lower scores on satisfaction with social activities compared to non caregivers.

PRESENTATIONS AND PUBLICATIONS:

During the past year, REACH investigators collaborated on a book: Schulz R, ed., Handbook of Dementia Caregiving Intervention Research, Submitted to Springer:New York.  Drs. Burns, Nichols, and Martindale-Adams contributed to chapters in this text.

Nichols LO, Malone C, Tarlow B, Loewenstein D.  Chapter 4.  The Pragmatics of Implementing Intervention Studies in the Community.

Switzer G, Wisniewski S, Belle S, Burns R, Winter L, Thompson L, Schulz R.  Chapter 6.  Measurement Issues in Intervention Research.

Gitlin L, Corcoran M, Martindale-Adams J, Malone C, Stevens A, Winter L.  Chapter 7.  Identifying Mechanisms of Action:  Why and How Does Intervention Work?

Mahoney D, Burns R, Harrow B.  Chapter 8.  From Intervention Studies to Public Policy: Translating Research into Practice

Previously, two symposia and one presentation had been given focusing on the theoretical basis and preliminary work:

Gerontological Society of America Annual Meeting, November, 1996:  Symposium - Resources for Enhancing Alzheimer’s Caregiving (REACH):  Innovative approaches to AD caregiving interventions, Marcia Ory, Ph.D., organizer.  Presentation - Providers and Caregivers Together: PACT, Robert Burns, M.D.

American Geriatrics Society Annual Meeting, May, 1997: Symposium - Resources for Enhancing Alzheimer’s Caregiving (REACH):  Innovative approaches to AD caregiving interventions, Robert Burns, M.D. organizer.  Presentation - Interventions in primary care, Robert Burns, M.D.

International Presentation –

Nichols, L, Gitlin, L, Burns, R.  Interdisciplinary Approaches to Alzheimer’s Disease: Collaboration with Caregivers and Patients.  Presented at the All Together Better Health: Improving Collaboration in Education and Practice (also The 19th Interdisciplinary Health Care Team Conference for the United States), London, UK, July, 1997

Local Presentations –

Burns, R.  Dementia, Caregivers and REACH.  Presented at the Neurology Grand Rounds, University of Tennessee. November, 1997

Nichols, L.  Dementia, Caregivers and REACH.  Mid-South Hypertension Coalition Meeting, University of Tennessee, March, 1998

Burns, R.  Dementia, Caregivers and REACH.  University of Tennessee Continuing Education’s 31^st Annual Review Course for Family Practice, University of Tennessee, March, 1998

Nichols, L, REACH.  Health Services Research and Policy Conference, Department of Preventive Medicine, University of Tennessee, June, 1998

UNIVERSITY OF MIAMI

Family-Based Intervention for Caregivers

REACH Progress Report

July 1999

Carl Eisdorfer, Ph.D., M. D.,Principal Investigator

GOALS OF THE STUDY

The project employs a Family-Based Structural Multisystems In-Home Intervention (FSMII) to enhance family support for Caregivers of patients with dementia, and is investigating the efficacy of a Computer Telephone Integration System (CTIS) to further enhance the effects of the family intervention.  The underlying assumption of this approach is that with rare exceptions, primary caregivers have resources within themselves as well as their families and communities that can be harnessed to reduce or solve problems associated with caregiving.

A particular focus of this study is to develop knowledge that is culturally specific.  Specifically the study is examining the efficacy of FSMII and FSMII + CTIS on family functioning, caregiver burden, distress and well being in two groups with different cultural backgrounds (Cuban and White American).  The efficacy of the interventions is being assessed relative to a telephone -administered minimal support condition (MSC).  A further contribution of this research is the evaluation of using a multidisciplinary intervention that combines psychosocial and engineering solutions in enhancing the support systems of caregivers and alleviating the burden among family caregivers of persons with dementia.

SAMPLE RECRUITMENT AND RETENTION

A total of 224 families are enrolled in the study.  The initial recruitment goal was only 216 families.  There are at least 36 subjects per cell with a total of at least 72 per intervention collapsing across ethnic groups.  The two primary clinical recruitment sites for the subjects were the Wien Center for Alzheimer's Disease and Memory Disorders located at Mount Sinai Medical Center and the University of Miami Memory Disorders Center.  Both centers are directed by the project's Principal Investigator, Dr. Carl Eisdorfer.  Subjects were also recruited from the community through advertisement (e.g. radio, newspaper, television).  Within each family three kinds of subjects are defined for purposes of assessment:  the Alzheimer’s Disease patient, the primary caregiver, and another family member.  The clinical record of the Memory Disorder Clinics is used to identify the primary caregiver who is defined as the individual providing the most emotional and instrumental support to the AD patient.  The family members are defined to include all individuals living in the household on a permanent basis, other immediate family members (sons, daughters, their spouses), or individuals considered to be part of their extended family who provide emotional and/or instrumental support to the AD patient or caregiver on at least a bi-weekly basis.

Entry Criteria

Potential participants were screened using the screening protocol developed by REACH to ensure that they meet the inclusion/exclusion criteria established for the study.

Additional site specific inclusion/exclusion criteria included:

1.      The patient has a DSM-IV diagnosis of dementia.

2.      To be included in the Cuban-American group, the primary caregiver must self-identify both him or herself and the care recipient as Cuban or Cuban-American.  To be included in the White American group, the primary caregiver must self-identify both  him or herself and  the care recipient as White American.

3.      There is at least one family member identified by the primary caregiver as potentially available for providing emotional or instrumental support to the primary caregiver or the patient who is willing to participate in the study

4.      The patient must not be functionally blind or deaf.

Current Subject Accrual

The Miami site entered the field in April, 1997.  As of March 31^st, 1999, when the recruitment phase of the study ended, 233 participants were enrolled in the study.  Two hundred and twenty four of these subjects were randomized, and nine had participated in the project as pilot families.  In terms of the follow up assessments we have experienced very few problems primarily related to illness, placement, death, and relocation.  When the latter was the case, most subjects still agreed to answer a brief discontinuation battery that is administered over the telephone.

Subject Retention

To maintain participation in the study, we try to develop a sense of commitment to the research among the participants by maintaining contact between scheduled assessments.  For example, we send thank-you letters, holiday and birthday greetings, etc.  We carefully track reasons for discontinuation in the study.

To date there have been 23 participants that chose to actively discontinued from the study, and the rest of the attrition is primarily due to other reasons listed on the table below.

As expected about 50% of the  subjects that discontinued were in the MSC condition.  Most subjects claimed “this was not the condition for them”.  One person dropped right after the initial assessment and randomization had been completed.  Another common reason given by the caregivers is that “the presence of others in the home made the CR uncomfortable”.

DATA COLLECTION

The Core battery and site specific measures are collected at baseline (T1), six months after baseline (T2), 12 months after baseline (T3), and 18 months after baseline (T4).  The site specific measures include:

Acculturation/Biculturalism Scale (Szapocznik, Scopetta, Kurtines & Aranalde, 1978; Szapocznik Kurtines & Femández, 1980) is made up of a 24-item Behavioral Acculturation Scale and a 24-item Biculturalism Scale.  This measure is essential when assessing an immigrant sample of Caregivers such as in the present study.  It is also essential in looking at potential breakdowns in family communication due to varying levels of acculturation between parents and children.

The Structural Family Systems Ratings (SFSR; Szapocznik, Rio, Hervis, Mitrani, Kurtines & Faraci, 1991; Szapocznik & Kurtines, 1989; Szapocznik, Kurtines, Santisteban & Rio, 1990) is a family assessment procedure designed for use in evaluating family functioning on the basis of interactional patterns.

F-COPES (Olson & McCubbin, 1982) is a 30 item measure used to measure family coping.

CTIS Assessment Questionnaire Caregivers will be asked to evaluate, via questionnaire, ease of system use, likes and dislikes, usefulness of the system, and perceived benefits.

CTIS Therapist Questionnaire Therapists will be asked to evaluate, via questionnaire, ease of system use, likes and dislikes, usefulness of the system, and perceived benefits.

CTIS Usage Variables include frequency of system use and system features used call duration, date of call, time of call, and communication patterns. 

Screen for Caregiver Burden (Vitaliano et al., 1991) is a 25 item scale used to assess subjective burden.

Direct Functional Assessment Scale (DAFS: Loewenstein et al., 1989) is a behaviorally based rating scale which involves the directly observed assessment of a broad range of functional capacities which are often compromised in Alzheimer’s Disease and related disorders

disorders.  The DAFS is administered to the patient and will only need to be done at

follow-up assessments.  It represents no additional time on the part of the caregiver.

Judgment of Patient Functional Capacity This instrument developed by Loewenstein and Argüelles (1994) is a questionnaire administered to the caregiver regarding functional capacity of the care recipient on tasks evaluated on the DAFS functional scale.

DATA MANAGEMENT AND ANALYSIS

Procedures have been developed for management of the Core and site-specific assessment measures.  To ensure quality control of the data, a manual of operations documents the procedures for data collection and management for the Core and site measures.  Separate databases have been developed for both the Core and site-specific measures.  All data is double-entered by trained and certified data entry personnel.  Both simple data range checking and customized data checks are performed on a regular basis to ensure accuracy of data entry.  Data entry errors that are identified are reviewed and corrected by the Data Entry Manager.

Software continues to be developed for the CTIS system to refine the collection of continuous, real time system usage data.

INTERVENTION PROTOCOLS

This study employs a Family-Based Structural Multisystems In-Home Intervention (FSMII) and a Computer Telephone Integration System (FSMII + CTIS).  Carefully trained and closely supervised family therapists provide treatment in both the FSMII and the FSMII+CTIS conditions.  Treatment involves weekly in-home family therapy sessions for the first 4 months of the intervention period, bi-weekly sessions for months 5 and 6 and monthly booster sessions for months 7-12.  The duration of each session is approximately 90 minutes.

Family-Based Structural Multisystems In-Home Intervention (FSMII)

The family-based therapeutic intervention is based on a systems approach pioneered by Szapocznik and colleagues for work with depressed elderly Cuban born individuals. Since this early work the intervention has been expanded to a more contextual and multisystemic approach where the individual is viewed as embedded in nested social and cultural systems.

With respect to caregivers, the goal of the intervention is to reduce the distress of managing and living with a person with a dementing illness and enhancing the functioning of the family.  The challenge for the family-based intervention research is to identify specific problems caregivers are experiencing, the efficacy of family problem-solving styles and solutions, the range of useable family resources available and accessible to the family, and the capacity of caregivers and their families to collaborate in the caregiving effort.  There are three types of therapeutic activities which take place in FSMII: 1)  joining, the process of establishing a therapeutic relationship; 2) diagnosis, the identification of maladaptive interactional patterns; and 3) restructuring, defining the nature of the therapeutic interventions that the therapists uses to change the maladaptive patterns.

Computer Telephone Integration System (FSMII + CTIS)

The CTIS system serves to augment the therapeutic intervention.  The technological component is comprised of a telephone-like device that is user friendly, and is intended to facilitate interactions between the caregiver, family members, therapist, and other support systems.  The system involves the use of screen phones which marry basic telephones with computer inputs and outputs.  Screen phones allow text and voice to be sent and received during an interaction session.  The system is menu driven and the user is guided through the system by verbal prompts.  A number of features are available on the system including: place a call; messaging (both individual and group); conferencing (up to 6 people simultaneously); access to pre-stored information; and other caregiver respite functions.

The system is bi-lingual; all text and voice messages are presented in English and Spanish, depending on the language of the participant.

Minimal Support Condition (MSC)

The control condition is a minimal support control.  It  consists of the treatment procedure currently used in the Memory Disorders Clinic, and constitutes the baseline that subjects in all conditions receive.  In addition, in order to form a face valid minimal intervention subjects in this condition are contacted by a research assistant using the REACH MSC Protocol at approximately the same frequency as in the other two conditions.  They will receive biweekly calls for the first six months, and monthly calls thereafter.  Educational materials in English or Spanish will be sent to the participants using the protocol developed by  REACH.

Ancillary / Pilot Studies

The Miami Site has been awarded three minority supplements.  All of them are progressing on scheduled as defined by their proposals.

Minority Supplement 1.  Awarded to Soledad Argüelles, Ph.D. (11-06-96 to 08-31-98).  The primary focus of the study is on the standardization of the caregiver Report of Functional Capacity Questionnaire (CRFP-R, Loewenstein & Argüelles, 1997) with a culturally diverse population.  The outcomes of this study will provide valuable information regarding sources of stress for caregivers.  Also, since little is known about the relationship between the caregiver’s perceptions of functional capacity and actual functional capacity of the care recipient (CR), it will impact the development of effective interventions for caregivers, which is also the goal of the parent study, by focusing on the mismatch between caregivers expectations and CR’s performance, and do it in light of a culturally diverse population.  Furthermore, this information will be extremely valuable in the diagnostic process and will consequently have an impact in the treatment and management of both patients and caregivers.  Through her study, Dr. Argüelles will assist us in: 1)  determining the extent of the CR and caregiver biases on specific tests of functional capacity in different ethnic groups; and 2) assessing how a caregiver’s perception of functional capacity relative to a person’s actual performance can be influenced by culture and other factors, such as depression, etc.  Dr. Argüelles has already completed her data collected and is currently in the manuscript preparation stages.

Minority Supplement 2.  Awarded to Martha Corvea, Ph.D. (10-01-97 to 08-31-00)

This study will focus on the observation of recruiters and their clinical notes (10% of the cases) and Structured Interviews with them on randomly selected 50% of the cases for the Miami Site.  Dr. Corvea will be responsible for the treatment fidelity aspects of the study, which requires her to be closely involved in all clinical research monitoring activities.  She will be responsible to keep the investigators appraised of empirical findings that have implications for intervention implementation in addition to her ratings of treatment efficacy and engagement.

Minority Supplement 3.  Awarded to Dolores Perdomo, LCSW.  (10-01-97 to 08-31-00).  Ms. Perdomo will explore the use of the CTIS intervention and the Palo Alto Psycho-educational class intervention on single caregivers.  She will begin recruitment for her project in the next couple of months and she is almost finished with the development of her protocol.

PUBLICATIONS AND PRESENTATIONS

Argüelles, S., Argüelles, T., Czaja, S., Eisdorfer, C., Loewenstein, D., Mitrani, V., Rubert, M., & Szapocznik, J.   Assisting caregiving families: challenges and new treatments.  C.  Eisdorfer & S. Czaja (Co-Chairs) Symposium submitted to the 1999 meeting of the Gerontological Society of America.

Argüelles, S., Argüelles, T., Czaja, S., Eisdorfer, C., Loewenstein, D., Mitrani, V., Rubert, M., & Szapocznik, J.  (1998, November).  Assisting caregiving families: challenges and new treatments.  C. Eisdorfer & S. Czaja (Co-Chairs).  Symposium presented in the 51^st Annual Scientific Meeting of the Gerontological Society of America.  Philadelphia, PA.

Argüelles, S., Corvea, M., & Rubert, M.  (1998, November).  Cuban Americans and family therapy: Issues of engagement and treatment.  M. Rubert & M. Ory (Organizers), Four Different Interventions with Minority Caregivers: Clinical Issues from the Resources for Enhancing Alzheimer’s Caregiver’s Health (REACH) Project.  Symposium conducted at the 51^st Annual Scientific Meeting “The Changing Contexts of Aging: Opportunities and Challenges in the New Millennium” for the Gerontological Society of America.  Philadelphia, PA.

Argüelles, S. & von Simson, A.  (In press, 1999).  Innovative family and technological interventions for encouraging leisure activities in caregivers of persons with Alzheimer’s disease,  Activities, Adaptation, & Aging, 24.

Burgio, L. Bourgeois, M., Clark, K., Czaja, S., Gallagher-Thompson, D., Gittlin, L., Kramer, H., Leveck, M., Lichstein, K., Nichols, L., Ory, M., Stevens, S., Szapocznick, J., & Volicer, L.  Cross-site comparison of caregiver interventions.  Presentation at the Annual meeting of the Gerontological Society of America, 1997.

Burgio, L., Coon, D., Gallagher-Thompson, D., Menéndez, A., Guy, D., Vance, D., Four Different Interventions with Minority Caregivers:  Clinical Issues From The Resources For Enhancing Alzheimer’s Caregiver Health (REACH) Project.  M. Rubert & M. Ory (Co-Chairs) of a Symposium presented at the 1998 meeting of the Gerontological Society of America.

Czaja, S. T. (1999, March).  The future role of technology in caregiving.  Presentation at the 45^th Annual Meeting of the American Society on Aging.  Orlando, Florida.

Czaja, S. T., Eisdorfer, C., and Schulz, R.  (In Press).  Future directions for intervention research.  In R. Schulz and M. Ory (Eds.).  Handbook of Dementia Caregiving.  Springer Press.

Eisdorfer, C., Czaja, S., Szapocznik, J., Rubert, M., Mitrani, V., Loewenstein, D., Argüelles, S., & Argüelles, T.  (1998, December).  Family-based interventions for caregivers of Alzheimer’s patients.  Poster session presented at the 4^th Annual Departmental Poster Session (Department of Psychiatry and Behavioral Sciences).  Miami, FL.

Gallagher-Thompson, D., Arean, P., Menindee, A., Takagi, K., Argüelles, T., Rubert, M., Loewenstein, D., & Szapocznik, J.  (In Press).  Development and implementation of intervention strategies for culturally diverse caregiving populations.  In Schulz and M. Ory (Eds.).  Handbook of Dementia Caregiving.  Springer Press.

Lee, Chin Chin (1999, April).  The application of statistical optimization techniques to Psychobehavioral interventions.  Thesis completed in partial fulfillment of the Masters of Science degree in Industrial Engineering.  University of Miami, FL.

Rubert, M., Czaja, S.,  Eisdorfer, C. (November, 1997).  The Integration of Technology and Family Therapy.  Paper presented at the Annual Meeting of the Gerontological Society of America, Cincinnati, OH.

Rubert, M., Eisdorfer, C., & Czaja, S.  (1996).  Family-based interventions for Caregivers.  Paper presented at the Annual Meeting of Gerontological Society of America.  Washington, DC.

Related Publications & Presentations

Argüelles, T.  Providing Help to a Group of Special and Diverse People.  In J. Bruce, M. Bastien, & T. Argüelles, (Symposium).  Issues in Diversity: A Mandate for Accommodation.  Moderator:  Angela Aracena.  A regional Alzheimer’s Disease Conference on a Unified Vision of Hope in a Diverse Society” for the Alzheimer’s Association.  Davie, FL.  (February, 1999).

Argüelles, T.  Providing Help to a Group of Special and Diverse People.  REACH.  Invited presenter in EDU 667, Counseling Special and Diverse Populations, a graduate course in Diversity held at Saint Thomas University.  Miami, FL (June 23, 1998).

Argüelles, T.  Community Resources - Recursos Comunitarios.  Hispanic Caregivers Assistance Program.  Wien Center for Alzheimer’s Disease and Memory Disorders.  Miami Beach, FL (June 10, 1998).

Argüelles, T.  La Salud Mental y la Cultura Hispana (Mental Health and the Hispanic Culture).  Facilitando el Manejo del Cuidado en el Hogar.  Annual Caregiver Training Seminar for Spanish-speaking Caregivers sponsored by the ADI (Alzheimer’s Disease Initiative).  Miami, FL (February 28, 1998).

Argüelles, T., Bravo, M., & Gónzalez, Z.  Psychopathology and Lifestyles of the Hispanic Elderly.   Hispanic Family Conference.  Hispanics 21.  “Hispanics moving towards the XXIst Century.”  Metro-Dade Department of Human Services.  Office of Youth and Family Development.  Miami, FL (October 3, 1997).

Eisdorfer, C.  Care for the Caregiver.  Presented in A regional Alzheimer’s Disease Conference on “A Unified Vision of Hope in a Diverse Society” for the Alzheimer’s Association.  Davie, FL.  (February, 1999).

VA PALO ALTO HEALTH CARE SYSTEM AND

STANFORD UNIVERSITY SCHOOL OF MEDICINE

Treatment of Distress in Hispanic and Anglo Caregivers

REACH Progress Report

July 1999

Dolores Gallagher-Thompson, Ph.D., Principal Investigator

GOALS OF STUDY

The relevant research literature has demonstrated that providing care for demented family members requires extensive time and labor that often produces significant burden for caregivers.  In many cases, this burden drains the family caregiver’s social and psychological resources and leads to the development of substantial emotional distress.  The primary goal of the California site’s research project remains the investigation of the relative effectiveness of three psychologically-based approaches to the treatment of distress in Hispanic and Anglo women who are the primary caregivers of demented family members. These three approaches include a psychoeducational class (Coping with Caregiving), an enhanced support group, and a telephone-based minimal support condition.

In addition, this study will extend the theoretical and clinical understanding of the caregiving experience to one group of minority families (the Hispanic family) whose proportion is steadily increasing in this country.  The careful study of how Hispanic caregivers respond to their caregiving situations is an important question with policy implications that need to be addressed. As well, knowledge of which interventions help to reduce psychological distress in these women will provide new information relevant for the appropriate care of this group.

This project will contribute to improved scientific knowledge in the field of intervention research in 2 ways:  1)  through rigorous investigation of the comparative effectiveness of three very practical interventions for improved well-being,  and 2) through examination of the relationship between specific personal characteristics (e.g., caregivers’ style of handling frustration, and caregivers’ perceived social support) and actual physical and mental health outcomes.  The latter, emphasizing how certain individual difference variables affect outcome, is a relatively new focus, with little empirical data that directly pertain to family caregivers.  Thus, our project will help to answer the question of who is likely to benefit from which specific intervention.  Finally, it provides the opportunity to determine if psychologically-oriented interventions have a discernible impact on the physical health of family caregivers.  Such indices as type of psychotropic medications used on a regular basis, and number of hospital visits of the caregiver, will provide valuable information on health status that has been overlooked in comparable studies.

SAMPLE RECRUITMENT AND RETENTION

In designing this intervention project, local REACH staff planned to retain across the project 125 completers per ethnicity including 25 minimal support group completers, 50 psychoeducational class completers, and 50 support group completers from each self-identified ethnic group.  Over a 31 month recruitment period (October 1996 – April 1999), the project staff also set the ambitious goal of enrolling a total of 330 caregivers which included an additional 40 caregivers per ethnicity (Anglo/White and Hispanic/Latino) beyond the 125 completers to help account for subject discontinuation.  This goal built in a sizeable discontinuation rate of over 24%.  Our actual recruitment figures are presented below.

This site developed a thorough recruitment and retention plan that identifies key project staff dedicated to our outreach and recruitment efforts.  This staff includes bilingual/ bicultural outreach workers, interviewers and interventionists with graduate training in psychology and/or gerontology.  This recruitment plan describes key linkages to organizations from which study participants will be recruited.  Publicity materials were designed and media sources were identified during the first two years of this grant to promote outreach, with special attention paid to identifying organizations and linkages that foster recruitment within our local Hispanic communities.  In particular, we utilized a group of three highly experienced and respected Hispanic professionals as consultants to develop these key linkages and to assist in the implementation of our recruitment strategies and retention plans.  In addition, a community advisory board composed of a diverse group of professionals was established and continued to assist with our recruitment and retention efforts this year.  Well over 100 staff presentations were given to provide information on the diagnosis and treatment of dementia and the problems associated with caregiving, with at least half of them given to Hispanic/ Latino staff dealing specifically with Latino elders and their families. These of course provided additional opportunities to promote Project REACH/ALCANCE.  The California project staff also created step-by-step policies and processes for subject screening and referral, and delineated recruitment waves for the life of the project that target specific geographic locales.  Key geographic locales include:  San Jose area, San Mateo County, Davis/Modesto area, South Santa Clara County, San Francisco County and Monterey County.

The Palo Alto site was “in the field” from October, 1996 through April 1999 for a total of 31 months.  In order to receive approval to enter the field, we had to complete a variety of tasks in both Spanish and English including:  1) pilot-testing and translation of all CORE and site-specific interview measures; 2) finalization and translation of all three treatment protocols;  3) certification of staff to perform CORE interviews; 4) training of staff in the site-specific battery of measures, all quality control procedures, and all three interventions;  5) outreach and advertising of the project in both languages in order to generate referrals; 6) recruitment of participants (including pre-screen, screening, and obtaining informed consent;  6) finalization of the randomization procedures to be followed (this was particularly complex because two of the three interventions are group based, meaning 8 individuals who can meet at the same time and place, and who speak the same language, need to be randomized to the same condition before that particular class or support group can begin); and 7) actual implementation of all three types of interventions with appropriately randomized participants.  Given all of the above, we ultimately enrolled 42 different subject waves including 13 Coping with Caregiving classes, 14 Enhanced Support Groups, 11 Minimal Support Conditions, and 4 Assigned Minimal Support Conditions.  Thirty (30) of these waves have been conducted in English and 12 have been conducted in Spanish.

Recruitment Sources

Caregivers were recruited from the community through two linkage systems:  1)  contacts within the VA Palo Alto Health Care System (VAPAHCS), and 2) local community contacts outside the VAPAHCS.  Both professional and self-referrals were welcomed.

Primary sites (and organizations) within the VAPAHCS include the following:

Stanford/VA Alzheimer’s Diagnostic Resource Center:  a center providing comprehensive assessments of individuals with memory problems, as well as information and referral services for these individuals and their family members.

Dementia Consortium: a multidisciplinary group of professionals working with individuals suffering from various dementias.  Our program was already presented to this group, and plans are underway to send group members flyers and a brief summary of the project over the VA e-mail system.

Dementia (Alzheimer’s) Care Program:  a program established for veterans diagnosed with Alzheimer’s Disease and/or severe dementia of whatever etiology whose short and long term memory impairments interfere with social and occupational functioning.

VA Clinic of Monterey:  a multidisciplinary team of professionals who provide outpatient medical care to veterans and their families in Monterey, Santa Cruz and San Benito counties.  REACH referral services include social work, neurology, psychiatry, psychology, dermatology and general medicine.

Primary sites (and organizations) identified through local community contacts include:

Alzheimer’s Association (local chapters) :  We continue to maintain a healthy working relationship with local Alzheimer’s Association administrators and staff by building on a system of mutual information and referral.  In addition, the Association hired a multicultural outreach coordinator and a bilingual/bicultural staff member during implementation of the REACH Project.  Both positions are indicative of the continued strengthening of our ties with the Association.

Community based senior programs, Alzheimer’s day care centers, & health care network programs:  We conducted outreach and obtained referrals from a variety of community based programs including:  Casa MACSA (Mexican-American Community Services Agency); the East Side (San Jose) Community Center and the Fair Oaks Community Center in Redwood City (which serve almost exclusively a Latino population);  Rosener House Adult Day Care Program in Menlo Park; the Senior Day Health Program of Palo Alto; Jovenes de antaño (adult day care program in Hollister), Linkages Program (a senior social services program for Monterey County), Salvation Army (SAFE) Adult Day Support Center, VNA’s Stroke Handicapped Adult Rehabilitation Education/Alzheimer’s Day Care Resource Center (SHARE/ADCRC), Salinas Adult Day Care, Elderday (Santa Cruz), Cindy’s Celebrations (Santa Cruz), Health Projects Center (Del Mar Caregiver Resource Center) with offices in Salinas, Hollister, and Santa Cruz; the On Lok Demonstration Project in San Francisco (with emphasis on their 30th Street Center that serves almost exclusively the Latino community in that area and which includes a day health/day care program for demented elders); and the Alzheimer’s Activity Center of south San Jose which offers day care to demented adults. In addition, we regularly distributed referral information to various medical centers in the region, including Stanford, the Kaiser-Permanente System, Community Hospital of the Monterey Peninsula, Salinas Memorial Hospital, and county medical facilities.  Within the last year, the REACH project has developed and extended collaborative relationships with Catholic Health Care West, which includes eleven Bay Area hospitals from San Francisco to Morgan Hill.  Outreach techniques used by Catholic Health Care West to promote REACH include:  staff e-mails, informative faxes and flyers to all key staff, staff/hospital newsletters, and joint media advertisement.   Outreach workers met regularly with staff at all these organizations to provide flyers and referral information. They also often provide in-service staff training and community presentations on topics related to the project, as a vehicle to maintain effective community relations.  Finally, large mailings targeting Hispanic/Latino families in particular were also successfully implemented through clinics at the University of California, San Francisco, and the through In Home Supportive Services.

Local media sources:  Several local television stations, radio stations, and newspapers have featured REACH human interest stories, staff interviews or news segments, and free advertisements or public service announcements.  For example, KOFY TV-20  and KICU TV- Action 36 television stations, as well as KGO-AM  (San Francisco) and KSJO-FM (San Jose) radio stations have provided feature stories and/or free advertisement for REACH.  Bay Area and community newspapers such as San Mateo Times, San Jose Mercury News, Palo Alto Weekly, Senior Info (San Jose), Menlo Park Almanac, The Californian (Salinas), Monterey County Herald, and the Mountain View Voice have provided similar services.  Media specifically serving the local Latino community have  also highlighted the REACH project.  These contacts include Channel 6, Channel 48 and Channel 4 Bay Area television stations, KSOL radio, and La Oferta, El Observador, Vistazo, El Bohemio and Momento newspapers

Entry Criteria

The entry criteria for caregivers and care recipients at the Palo Alto site met those determined by the REACH Sampling and Recruitment Working Group.  However, for caregivers whose family member does not have a clinical diagnosis of dementia, the results of the cognitive screen (MMSE) and three other baseline measures (ADL, IADL, and RMBPC) are reviewed by the project geropsychiatrist.  If the results of these measures are consistent with a diagnosis of dementia, the project geropsychiatrist signs a form to that effect which is housed at the Older Adult Center, and these caregivers are submitted for randomization.  If the results of these measures are not consistent with a diagnosis of dementia, patients are referred for further evaluation before inclusion. 

The Palo Alto site has two additional entry criteria: 1) the caregivers must be women, and 2) the caregivers must self-identify as Caucasian/White or Hispanic/Latina. 

Current Subject Accrual

A total of 257 subjects were randomized into one of the three conditions by the end of recruitment on April 30, 1999.  Of these subjects, 110 described themselves as Hispanic and 147 described themselves as White, not of Hispanic origin.  An additional 7 White caregivers were unable to be counted in groups of subjects gathered together as a part of the randomization process, since at least 4 or more caregivers were required for each group randomized.  These 7 subjects were a part of enrollment waves composed of less than four subjects, and therefore were ultimately assigned to the MSC condition.  Although these 7 caregivers participated in REACH interviews and were provided services, they are not included in the recruitment totals.  These totals represent 118% of the projected goal for White project completers and 88% of Hispanic project completers. 

Subject Retention

To maximize retention, we have instituted the following: 1) telephone lines serviced by bilingual/bicultural staff, 2) coverage of transportation and respite costs for caregivers as needed, 3) payment for subject participation in interviews, 4) consistent follow-up by phone and mail for missed sessions, 5) regular “booster sessions” for those who have to unavoidably miss a caregiver class,  and 6) mail contact including birthday cards and thank you notes for caregiver participation in the interviews.

As of June 1, 1999, there have been 31 reported placements and 29 reported deaths of care recipients, including 7 caregivers who placed their care recipients and then the care recipients died prior to the caregivers’ completion of the project.  A total of twenty-four (24) participants chose to discontinue prior to completing their 18 month follow-up interviews.  Of those who discontinued, one caregiver placed her loved one and then chose to discontinue project participation at a later date, and two other caregivers completed bereavement batteries after the death of their loved ones and then chose to discontinue participation before fully completing their 18 month interview.  Please see the table below:

Participants reported discontinuing for the following reasons: death of care recipient (2), placement/illness of care recipient (4), time constraints (9), did not want to answer interview questions (1), did not like assigned intervention (4), caregiver moved (2), and legal/family problems (1).  In addition, two (2) caregivers died before completing the project.

DATA COLLECTION

Data collection of CORE and site specific measures occurs at baseline, 6, 12 and 18 months.  In addition, some CORE measures and all site specifics are taken at 3 months.  

The Palo Alto site-specific measures include:  Cognitive status (Pearlin), Self-efficacy for Caregiving (Zeiss, Gallagher-Thompson, Bandura, 1992; revised Thompson, 1996), Stress Related Growth Scale (Park), State-Trait Anger Expression Inventory (Spielberger),Annoyance Interview (Steffan & Gallagher-Thompson), Older Adult Pleasant Events Schedule (Thompson & Gallagher Thompson; revised 1996), Geriatric Depression Scale (Yesavage), Revised-Ways of Coping Checklist (Vitaliano), Religious Coping (Pargament), ARMSA-II (Acculturation- Latina caregivers only; Cuellar).   Two of these measures (Cognitive status, and Self-efficacy for Caregiving) are also collected at other REACH sites.

As part of an ApoE ancillary study, three brief measures of cognitive functioning and a cheek swab (for genetic testing) are gathered from interested participants at the three month follow-up assessment.  These measures include:  California Older Adult Stroop Test (Marcopulos & Thompson), Trails B, and the Symbol Digit Modalities Test (Smith). 

DATA MANAGEMENT AND ANALYSIS

Data management and quality control procedures of both core and non-core data include double entry data verification, case and form checks, type and range checks, reports for missing data and edits, within and between form logical consistency checks, and data security and disaster recovery. All Core data will be entered and verified in the PoP entry system by certified data entry and data management personnel.   Site-specific data management methods, the randomization plan, and quality control procedures were developed, reviewed and approved by the Coordinating Center.  These materials are housed in this site’s Manual of Operations.  All site specific data will be entered twice, once each by two different data-entry personnel.  For this purpose, a SAS/AF double-entry verification program was designed that utilizes a three phase, error checking and editing system.  In addition, procedures were implemented for each of the following:  1) data security including secured areas for all data flow, entry and archival, 2) subject-tracking and scheduling for assessment and intervention contact, treatment implementation material, and subject retention activities (e.g., birthday cards and thank-you letters) and 4) data backup and archival.  A site specific Interviewer Instruction Manual patterned after the Core’s Instruction Manual was created to describe the administration of the site-specific interview question-by-question.  All site personnel are also trained with a detailed paper flow diagram to insure proper placement and tracking of all Core and site-specific hard data.  This site-specific Interviewer Manual and paper flow diagram assist with interviewer and data entry staff training and data quality control.  Similarly, all interviewers complete a detailed Interview Submission Checklist that delineates all material to return with each assessment.  This checklist is reviewed by data entry personnel, and is also used for quality control purposes.  The Data Manager works closely with Helena Kraemer, Ph.D., the project Biostatistician, the Principal Investigator, and the Project Manager, to achieve these objectives.  Statistical analyses to investigate the relative effectiveness of the site’s three interventions on key outcome variables will be carried out by the Data Manager under the supervision of Dr. Kraemer and Dr. Dolores Gallagher-Thompson.

Clearly, it is premature to report any data-based findings.  In accordance with analytic plans agreed to by all the REACH sites, detailed preliminary data analyses will be completed after all baseline data is collected.  However, we can report several observations based on our clinical experience to date. First, it was more difficult than anticipated to recruit participants (in either language) into this study.  Several factors can account for this including the number of other, comparable, caregiver research projects currently operating in our region of the country (most of which are targeted to Caucasian caregivers), and the politically-based sensitivity of many Hispanics to becoming involved with any government-sponsored activity, even research such as this which is clearly intended to benefit them and their family members.  Accordingly, we stepped up our recruitment and retention efforts by expanding the number of agencies with which we were in regular contact, in order to generate additional appropriate sites for this project.  We also spent a great deal of time and effort winning trust in the various Latino communities in which we advertised in order to promote a sense of security and safety, and thereby increase referrals. 

Second, we have observed that those who finally enroll in the project (from both ethnic groups) seem to benefit a great deal from their participation.  We have received numerous spontaneous ‘thank you’ cards and letters from participants after the intensive intervention period (the first 10 weeks), and others have commented that they will recommend the program to a friend. Still others have said that they are glad that the program offers the monthly “booster  sessions” so that the relationships they have formed can continue over time. These anecdotal data seem to us to be very positive and helped support our continued efforts to recruit participants into this research program.  Finally, an unanticipated outcome that has already occurred is the interest shown by health care professionals from other ethnic groups (particularly Asian-Americans) in our work. We have been approached to help others develop similar culturally sensitive programs that would meet the needs of their caregivers, and we are very pleased to be consulting with several such projects and professionals in the greater Bay Area.

INTERVENTION PROTOCOL

Detailed protocols have been developed for each of the three interventions.  Project staff had refined and piloted these materials in the first (planning) year, and finalized all of them in both Spanish and English during the second year.  The actual manuals/protocols are included in the Intervention Section of the Palo Alto Manual of Operations.  The three  interventions are as follows:

The Coping with Caregiving class (CWC)

This psychoeducational class is derived from theories that articulate the role of cognitions and behaviors in negative affective states.  It is designed to teach a limited number of mood management skills through two key approaches:  1) an emphasis on reducing negative affect by learning how to relax in the stressful situation,  appraise the care-receiver's behavior more realistically, and communicate assertively; and, 2) an emphasis on increasing positive mood through acquisition of such skills as seeing the contingency between mood and activities, developing strategies to do more small, everyday pleasant activities, and learning to set self-change goals and reward oneself for accomplishments along the way.

Enhanced Support Group (ESG)

This intervention is patterned after the typical support group available to caregivers in the community and was developed based on the principles outlined in a manual on support groups published by the Alzheimer’s Association. The ESG is “enhanced” because initially it meets weekly rather than monthly, as is typical in the community.  It is also designed to standardize meeting frequency and duration, as well as the overall length of time caregivers participate in the group. Finally, the distribution of specific educational material about caregiving at set time intervals is also unique to this type of support group.

Minimal Support Condition (MSC)

The telephone-based Minimal Support Condition is designed as a face-valid intervention that provides subjects with brief, regular contact and support. It was designed to assist in minimizing differential drop-out between this comparison condition and the other two treatment conditions.  The support provided by trained interventionists consists of active listening and appropriately expressed empathy.  The inclusion of this telephone contact condition is supported by both empirical studies in the research literature, as well as by the presence of similar telephone-based support programs in the local community.

All three conditions include the provision of identical educational materials relevant to caregivers of persons with dementia.  These materials are provided at pre-established time periods by three sites (Palo Alto, Birmingham, and Miami) which have collaborated in the development of this protocol. All materials are available in both Spanish and English.

Schedule of contacts

Participants in all three conditions are contacted on a similar schedule: once a week for the first 10 weeks, and then once a month for the next 8 months. However, each class and support group contact lasts 2 hours, while each telephone contact lasts approximately 15 minutes. No formal interventions will be offered to subjects in the class or support group between their 12 and 18 month follow-up assessments. Participants assigned to the MSC will be offered either the class or the support group between their 12 and 18 month follow-up assessment.  Besides these scheduled contacts, a log is kept of all unscheduled contacts by participants, so that at the conclusion of the study, we can estimate the amount of each caregivers’ actual contact with program staff in order to evaluate how the “intensity” of the intervention affects outcome.

ANCILLARY/PILOT STUDIES

In conjunction with the REACH Project, our site is conducting two ancillary studies:

Association between ApoE alleles and psychological distress in family caregivers.  (Principal Investigator:  Greer Murphy, M.D., Ph.D.)

As of June 1, 1999, a total of 140 subjects have been recruited, with REACH contributing 97 subjects to date (71 Anglos and 26 Hispanics). REACH data collection began in April 1997, although 2 factors impacted early recruitment.  First, due to last minute additional Human Subjects requirements at one of the recruitment sites, approximately 50% of the Latina participants recruited into REACH initially were not approached to participate in the ancillary study.  Second, an age restriction initially required by Dr. Murphy was withdrawn during the late Fall 1997.  Thus of those approached to date, we are experiencing approximately a 75% acceptance rate.  Recruitment is continuing because the base rate of e4 allele is low in the caregivers recruited thus far.  REACH anticipates helping to recruit 40 caregivers above it’s original commitment of 60 subjects to achieve the power necessary to detect differences among groups.  Once these numbers are achieved, REACH recruitment will stop, even though the parent project will continue.   REACH participant data is collected at the site-specific, 3 month interview point.

Neuropsychological test of memory in dementia.  (Principal Investigator:  Judith Ford, Ph.D.)

The study was carried out by Dr. Ford until April 199 when project recruitment ended. The Palo Alto REACH site agreed to help provide Dr. Ford with 15 self-identified Hispanic referrals.  Ana Menéndez, REACH Staff Coordinator, assisted Dr. Ford’s team in the referral process. REACH participants were provided with information regarding the study between their 12 and 18 month follow-up assessments.  The REACH project provided a number of referrals, however due to a translation barrier on materials for the project, Dr. Ford decided not to continue with the referral process at this time.  This may be revived in the future if appropriate resources and materials can be identified.

Finally, we were invited this year to submit a new study as part of a Mind/Body Center Grant proposal submitted by David Spiegel, M.D. of Stanford University Medical School.   This invitation grew out of a pilot study exploring the relationship between perceived stress and physiological stress (as measured by salivary cortisol) among family caregivers.  This pilot study which was approved by the REACH Steering Committee last year included 10 Latinas and 10 Anglo REACH subjects.  The Mind/Body Center grant was submitted on May 10, 1999 to be reviewed by September 1999. 

REACH PUBLICATIONS AND PRESENTATIONS

Coon, D. W., Schulz, R., & Ory, M.G.  (1999).  Innovative intervention approaches with Alzheimer's Disease caregivers. In D. Biegel & A. Blum (Eds.), Innovations in practice and service delivery across the lifespan (pp. 295-325) .  New York:  Oxford University Press.

Gallagher-Thompson, D., Arean, P., Menéndez, A., Takagi, K., Coon, D., Haley, W., Argüelles, T., Rubert, M., Loewenstein, D., and Szapocznik, J. (in press).  Development and implementation of intervention strategies for culturally diverse caregiving populations.  In Schulz, R. et al. (Eds.), Handbook of dementia caregiving intervention research.  New York:  Springer.

Wiskniewski, S. R., Belle, S. H., Coon, D.W., Marcus, S., Ory, M.G., & Schulz, R. The Resources for Enhancing Alzheimer’s Caregiver Health (REACH) Project Design and Methods.  Manuscript submitted for publication.

Gallagher-Thompson, D. & Coon, D. (November, 1996).  Treatment of Distress in Hispanic and Anglo Caregivers.  In, Ory, M. & Schulz, R. Resources for enhancing Alzheimer’s caregiver health (REACH):  Innovative approaches to AD caregiving interventions.  Symposium presented at the annual meeting of the Gerontological Society of America, Washington, DC.

Gallagher-Thompson, D., Menéndez, A. & Coon, D. (November, 1998).  Tailoring psychosocial interventions to the Latino caregivers:  Case examples from the REACH project.  In, Rubert, M., Four Different Interventions with Minority Caregivers:  Clinical Issues from the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) Project.  Symposium presented at the annual meeting of the Gerontological Society of America, Philadelphia, PA.

Gallagher-Thompson, D., & Ory, M. (submitted).  “REACH” Project:  Information about ethnic differences among AD caregivers prior to intervention.  Symposium for the annual meeting of the Gerontological Society of America, November, 1999.

M. Rubert & S. Czaja, Gallagher-Thompson, D., Menéndez, A., & Coon, D. (submitted).  Ethnic differences in symptoms of depression.  In Gallagher-Thompson, D., & Ory, M.,   “REACH” Project:  Information about ethnic differences among AD caregivers prior to intervention.  Symposium for the annual meeting of the Gerontological Society of America, November, 1999

Related Publications

Coon, D., Rider, K.,  Gallagher-Thompson, D., and Thompson, L. (in press). Cognitive behavioral therapy for the treatment of late-life distress.  In. M. Duffy (Ed.), Handbook of counseling psychology. San Francisco: Wiley.

McKibbin, C., Walsh, W., Rinki, M., & Koin, D.  (in press).  Lifestyle and health behaviors among female family caregivers:  A comparison of wives and daughters.  Aging and Mental Health.

Thompson, L., Powers, D., Coon, D., Takagi, K., McKibbin, C., & Gallagher-Thompson, D. (in press).  Group cognitive behavioral therapy with older adults.  In A. Freeman & J. White (Eds.), Cognitive behavioral group therapies for older adults.  American Psychological Association.

Steffen, A. M., McKibbin, C., Zeiss, A. & Gallagher-Thompson, D. (in press).  Revised self-efficacy caregiving scales:  Two reliability and validity studies.  Journal of Gerontology:  Psychological Sciences. 

Zeiss, A., Gallagher-Thompson, D., Lovett, S., Rose, J. & McKibbin, C.  (in press).  Self-efficacy as mediator of caregiving coping:  Developing and testing an assessment model.  Journal of Clinical Geropsychology.

Coon, D., Davies, H., McKibbin, C., & Gallagher-Thompson, D.  (1999).  The psychological impact of genetic testing for Alzheimer’s disease. Genetic Testing, 3, 121-132.

Coon, D., & Edgerly, E.  (1999).  The social consequences of Alzheimer’s disease.  Genetic Testing, 3, 29-36.

McConnell, L.M., Koenig, B.A., Greely, H.T., Raffin, T. A., &  the Alzheimer Disease Working Group of the Stanford Program in Genomics, Ethics & Society (Coon, D. W., Gallagher-Thompson, et al.) (1999).  Genetic testing and Alzheimer disease:  Recommendations of the Stanford Program in Genomics, Ethics and Society.  Genetic Testing, 3, 3-12.

Steffen, A. M., Thompson, L. W., Gallagher-Thompson, D., & Koin, D. (1999).  Physical and psychosocial correlates of hormone replacement therapy with chronically stressed postmenopausal women.  Journal of Aging and Health, 11, 3-26.

Gallagher-Thompson, D., Coon, D. W., Rivera, P., Powers, D., & Zeiss, A. M. (1998). Family caregiving:  Stress, coping and intervention.  In M. Hersen & V. B. Van Hasselt (Eds.), Handbook of clinical geropsychology (pp. 469-493).  Plenum Press.

McConnell, L.M., Koenig, B.A., Greely, H.T., Raffin, T. A., &  the Alzheimer Disease Working Group of the Stanford Program in Genomics, Ethics & Society (Coon, D. W., Gallagher-Thompson et al.) (1998).  Genetic testing and Alzheimer disease:  Has the time come?  Nature Medicine, 4, 757-759.

Steffen, A., Futterman, A., & Gallagher-Thompson, D. (1998).  Comparative outcomes of two interventions for clinically depressed caregivers.  Clinical Gerontologist, 19, 3-15.

DeVries, H., Hamilton, D., Lovett, S., & Gallagher-Thompson, D. (1997).  Patterns of coping preferences for  male and female caregivers of frail elders. Psychology and Aging, 12, 263-267

Gallagher-Thompson, D., Leary, M., Ossinalde, C., Romero, J.J., Wald, M., & Fernandez-Gamarra, E. (1997).  Hispanic caregivers of older adults with dementia:  Cultural issues in outreach and intervention.  Group:  Journal of the Eastern Group Psychotherapy Society, 211-232. (Invited).

Gallagher-Thompson, D., & Powers, D.V. (1997).  Primary stressors and depressive symptoms in caregivers of dementia patients.  Aging and Mental Health, 1, 248-255.

Gallagher-Thompson, D., Dal Canto, P., Darnley, S., Basilio, L., Whelan, L., Jacob, T. (1997).  A feasibility study of videotaping to assess the relationship between distress in Alzheimer’s disease caregivers and their interaction style.  Aging and Mental Health, 1, 346-355.

Steffen, A., Gallagher-Thompson, D., & Thompson, L.W. (1997). Distress levels and coping in female caregivers and non-caregivers with major depressive disorder. Journal of Clinical Geropsychology, 3, 101-110.

Gallagher-Thompson, D., Talamantes, M., Ramirez, R., & Valverde, I.  (1996).  Service delivery issues and recommendations for working with Mexican American family caregivers.  In G. Yeo & D. Gallagher-Thompson (Eds.), Ethnicity and the dementias. (pp. 137-152). Washington, D.C.:  Taylor & Francis Publishing Co.

Thompson, L.W. & Gallagher-Thompson, D. (1996). Practical issues related to maintenance of mental health and positive well-being in family caregivers. In: L. Carstensen, B. Edelstein, & L. Dornbrand (Eds.), The practical handbook of clinical gerontology. (pp. 129-150).  Los Angeles: Sage Publications.

Yeo, G. & Gallagher-Thompson, D. (Eds.). (1996).  Ethnicity and the dementias.  Taylor & Francis:  Washington, DC.

Publications under review

Gallagher-Thompson, D., Dal Canto, P., Thompson, L.W., & Jacob, T.  A comparison of spousal interaction patterns and distress:  The impact of Alzheimer’s disease on communication.  Under review:  Psychology and Aging.

Gallagher-Thompson, D., Lovett, S., Rose, J., McKibbin, C., Coon, D. W., Futterman, A., & Thompson, L. W.   The impact of psychoeducational interventions on distressed family caregivers. Under review:  Journal of Clinical Geropsychology.

McKibbin, C., & Gallagher-Thompson, D., (under review).  The relationship of affective style and emotional well-being to indices of physical health among female caregivers. Under review:  Journal of Aging and Health. 

Powers, D.V., Gallagher Thompson, D., & Kraemer, H. (under review)  A longitudinal examination of coping and depression in Alzheimer’s caregivers. Under review:  Psychology and Aging.

Related Presentations

Coon, D. W., & Gallagher-Thompson, D. (submitted).  Impact of group versus individual interventions for family caregivers.  In, Gallagher-Thompson, D.   Effective interventions to reduce caregivers’ distress and improve mental health.  Symposium for the annual meeting of the Gerontological Society of America, November, 1999.

Gallagher-Thompson, D. (submitted).  Effective interventions to reduce caregivers’ distress and improve mental health.  Symposium for the annual meeting of the Gerontological Society of America, November, 1999.

Gallagher-Thompson, D., Menéndez, A., Takagi, K., Coon, D. W. (submitted).  Diversity and dementia:  Issues and recommendations.  Preconference intensive for the annual meeting of the American Society on Aging, San Diego, CA, March, 2000.

Coon, D. W., Menéndez, A., Gallagher-Thompson, D., & Takagi, K. (accepted).  Addressing complex caregiver issues in our multicultural society.  Education session to be presented at the National Alzheimer’s Disease Education Conference, Long Beach, CA, July, 1999.

Hendrix, L. R., Lam, D., Menéndez, A., & Takagi, K.  (June, 1999). Ethnicity and the dementias.  Workshop presented at the Summer Workshop Series of the American Society on Aging, San Francisco, CA.

Coon, D. W. (March, 1999).  State of the art and practice implications of caregiver education and training research.  Presentation at the U.S. Department of Health and Human Services Administration on Aging’s Longevity in the 21^st Century Symposium, Baltimore, MD.

Gallagher-Thompson, D. & Coon, D. W. (March, 1999).  Caregiving issues and interventions in diverse groups.  Workshop presented at the Annual meeting of American Society on Aging, Orlando, FL.

Gallagher-Thompson, D., Menéndez, A., Haley, W., Takagi, K., Arean, P. & Coon, D. (August, 1998).  Diversity in Family Caregiving to Individuals with Memory Impairment.  Symposium presented at the annual meeting of the American Psychological Association, San Francisco.

Gallagher-Thompson, D., & Menéndez, A. (July, 1998).  Ethnicity and the dementias.  Workshop at the Summer Workshop Series of the American Society on Aging, San Francisco, CA.

Gallagher-Thompson, D., & Yeo, G. (March, 1998).  Ethnicity and the dementias.  Pre-conference workshop at the Annual meeting of the American Society on Aging, San Francisco, CA.

Gallagher-Thompson, D., Coon, D., & Thompson, L. (November, 1996).  Anger expression by type of treatment interaction predicts treatment outcome in family caregivers.  Presentation at the annual meeting of the Gerontological Society of America, Washington, DC.

THOMAS JEFFERSON UNIVERSITY

Home Environmental Skill-Building Program for Family Caregivers

Progress Report

July 1999

Laura N. Gitlin, Ph.D., Principal Investigator

GOALS OF THE STUDY

The goal of this project is to evaluate the feasibility and effectiveness of a specialized home-based program for families caring for dementia patients.  The intervention, “Environmental Skill-Building Program” (ESP), provides caregivers with the necessary skills and technical support to modify the home environment as an approach to managing behavioral excesses and functional limitations of dementia patients.  The program is based on a competence-environmental press framework and theories that articulate the impact of the environment on functional performance and behavior.  The purpose of a modification is to simplify task performance by minimizing differences between person capabilities and environmental demands.  Examples include instructing caregivers in the use of grab bars and a tub bench to promote safe transfer while bathing the dementia patient; or the placement of clothing in the order in which they are worn to facilitate initiation and sequence in dressing.

The functional limitations and behavioral changes that occur with the progression of dementia have been shown to place caregivers at increased risk of poor health, burden, fatigue, and emotional upset.  This project seeks to determine whether environmental skill-building reduces the negative consequences of caregiving.  Specifically, the project will examine the effects of an environmental skill-building intervention on a comprehensive set of measures including a caregiver’s physical health, sense of mastery and personal self-efficacy in managing dementia behaviors.  Also, the project will examine whether the intervention has an impact on functional capacity and the behaviors of the dementia patients themselves.  A secondary aim is to describe the types of home adjustments and behavioral adaptations caregivers make in response to dementia behaviors and which strategies are more accepted and used in daily caregiving. 

The study has completed its third year.  The focus has been on recruitment, retention, monitoring the interviewing and intervention protocols, and exploration of baseline data.

SAMPLE RECRUITMENT AND RETENTION

Primary Recruitment Source

The primary recruitment source for study participants is the Philadelphia Corporation for Aging (PCA), an area agency on aging.  PCA is responsible for screening persons in Philadelphia County for long-term care programs, including In-home Care (Options and Waiver Programs)  and the Family Caregiver Support Program.

In past years, REACH participants have been recruited from the pool of applicants who undergo an assessment by PCA and whose names are placed on a waiting list for PCA services. However, because of changes in state rules regarding eligibility for the Options Program, the number of caregivers on that waiting list has diminished greatly. Currently we are exploring the possibility of recruiting REACH participants from lists of caregivers already reeiving services through several PCA programs, including Waiver, Options, and the Family Caregiver Support Program.

Recruitment Procedure:

To recruit prospective participants from the PCA lists, the REACH recruitment clerk, who is situated in the Housing Department at PCA, reviews PCA applications and identifies those with: 1) memory loss, and 2) a caregiver who is living in the same household.  Those who meet these two criteria are sent a Philadelphia REACH brochure and a letter inviting the caregiver to contact the project director at Thomas Jefferson University.  A second letter of invitation is sent to those individuals who do not respond within one month of the first letter.  Susan Klein, Co-investigator and PCA Housing Director, is responsible for overseeing and monitoring the chart review and mailings on-site at PCA.  PCA maintains information on the number in the applicant pool who have been identified and sent initial letters and provides Thomas Jefferson University (TJU) with a weekly recruitment update report. Thomas Jefferson University maintains information about individuals who call TJU following the first letter, those who call following the second letter, those who are eligible and agree to participate, or those who are ineligible and the reason for their ineligibility.

Secondary Recruitment Sources

Secondary recruitment sources are newspaper advertisements and other social service programs for dementia caregivers in Philadelphia.  These are described below.

Newspaper ads: Display or personal advertisements have been placed in approximately a dozen community newspapers in Philadelphia.

Social Service Providers:  A mailing was sent to approximately 500 social service providers whose clients include dementia patients.  PCA mailed letters to each of these providers, introducing them to REACH and including several REACH brochures.  This mailing will be repeated in the coming year.  In addition, special arrangements have been made with the Counseling for Caregivers Program at the Philadelphia Geriatric Center, whose social workers often refer caregivers to REACH.

Entry Criteria

In addition to the Core Inclusion/Exclusion criteria, the Philadelphia REACH site excludes two categories of care recipients: (1) those who are legally blind or deaf and (2) those who had had massive strokes within the previous 18 months without there having been prior memory loss. Caregivers are excluded if (1) the home is structurally unsound (i.e., no usable bathroom, no running water, hanging plaster, exposed wires, floorboards severely cracked or rotten), (2) the caregiver is already participating in an in-home OT care service, or (3) the caregiver is planning to move from the housing unit within 18 months.

Subject Accrual

A total of 250 family caregivers from diverse cultural and economic backgrounds will be enrolled in the study over a period of 33 months.  Data collection began in May, 1997.  To date, 254 telephone screens have been completed, of whom 156 caregivers have been enrolled in the study.  The race and gender characteristics of study participants are presented in the table below:

Caregivers Enrolled in Philadelphia REACH Project as of June 1, 1999

Ninety-seven 6-month interviews, 69 12-month interviews, and 25 18-month interviews have been conducted.

As of April 26, 38 participants have been administered Transition Batteries (see table below):

Eighty-one caregivers have been randomized to the intervention condition.  Thirty-eight are currently in the Active Phase of the intervention (the first 6 months).  Nineteen have completed the Active Phase and are now in the Maintenance Phase.  Thirty-nine have completed the maintenance phase or discontinued. Twenty participants have been randomized in the Booster Phase of the study, 10 to the Booster intervention.

DATA COLLECTION

Since July, 1998, five new REACH interviewers have been hired, trained, and certified.

In addition to the Core measures that are shared by all sites, semi-core and site-specific measures are administered at four testing occasions:  baseline, 6, 12 and 18 months.  Data collection of baseline information formally began May 1, 1997.  Site specific measures are presented in the table below:

Site-Specific Measures

Semi-core Measures

We are collecting information about the level of assistance required of dementia patients using the semi-core measure that involves an adaptation of the Functional Independence Measure (FIM).

DATA MANAGEMENT AND ANALYSIS

An administrative database designed in Access for Microsoft Office is used by project personnel to monitor the following:  a) interview schedules, b) receipt of non-core interview materials and retention strategies, c) initiation and completion of check-coding procedures, d) data entry activity, and e) data cleaning activity.  As each caregiver is randomized, an individualized schedule of events is automatically printed from which events and their completion are recorded weekly.  Standard reports from the database are generated on a weekly basis to identify testing occasions and events.  Reports are reviewed and monitored by the Project Director.

Procedures to monitor quality control of site-specific measures have been implemented that are similar to those followed for Core measures.  Each interview is checked by the Assistant Project Director for missing data and inconsistencies.  Non-core data are entered on-site using the SPSS Data Builder Program.

INTERVENTION PROTOCOL

There are two groups in this study, intervention and control.  The intervention group receives the Environmental Skill-Building Program (ESP), and will be compared to a control group that receives care as usual.  A detailed protocol has been developed for the intervention that will be implemented by carefully trained and closely monitored occupational therapists.  Two new therapists have been hired and trained, in addition to the original four.  They completed 40 hours of training and pilot testing.

Intervention Group - Environmental Skill-Building Program (ESP)

Based on competence-environment theories, ESP involves three components: 1) educate caregivers about the impact of the home environment on dementia patients; 2) develop caregiver skills in modifying the home environment; and 3) implement specific environmental modifications to either make caregiving easier and/or to control behavioral excesses and functional limitations of the dementia patient.  Environmental strategies that involve home alterations and assistive devices will be ordered and installed by the Housing Department of the Philadelphia Corporation for Aging.  Examples of such include grab bars, monitoring systems, lighting adjustments, locks, removal of doors, stairglides, handrails.  A standard approach is used to identify caregiving problems from which customized environmental strategies are derived.

The process of educating, building skills and implementing specific strategies occurs in two successive phases (active and maintenance) over a 12-month period.  The active phase occurs over six months and involves five, 2-hour home visits and one telephone contact by a therapist.  In the active phase, problem areas are identified, education occurs, strategies are developed, tested and modified.

The maintenance phase occurs over the following six months and involves one, 2-hour home visit and three telephone contacts by the therapist.  This phase is designed to reinforce caregiving skills obtained in the active phase, refine use of installed devices and other specific environmental strategies, and help the caregiver generalize an environmental approach to newly emerging concerns.

In each contact during the active and maintenance phase, the therapist uses a combination of techniques to educate and build skills.  These include validation of caregiver approaches, demonstration, simulation, role play, discussion, education materials, behavioral logs, journals, observation of caregiver and care recipient.  A number of strategies have been implemented to monitor the treatment protocol and assure fidelity of the intervention.  These include audiotaping select sessions, a comprehensive set of measures and other forms to document intervention contacts, weekly telephone contact with therapists by project director, and monthly meetings with the investigative team to debrief about each caregiver contact.

Booster Phase

The Booster Phase of the study takes place in the last six months of study participation (i.e., between the 12- and 18-month interviews).  The Booster provides an additional four contacts with an O.T., and only half the intervention caregivers receive the Booster Intervention.  The purpose of the Booster Study is to determine whether this additional treatment helps caregivers.

After the 12-month interview, intervention group caregivers are randomly assigned to either the Booster intervention or no booster.  Inclusion criteria for these caregivers are as follows:

1.      Time 3 interview has been completed.

2.      Care-recipients are alive and still residing at home at the Time 3 interview.

3.      The caregiver participated in at least 3 contacts with the OT during the Active Phase. (This represents a simplication of our earlier Inclusion Criteria.)

The randomization procedure for the Booster Phase follows the general randomization procedure for REACH.  Envelopes containing assignments to experimental or control condition have been assembled in a random order.  These envelopes were prepared by Dr. Sue Marcus, Biostatistician for the Philadelphia REACH Project.  Participants eligible for the Booster are randomized according to the assignment specified in each envelope.  Assignment are carried out by Sandy Schinfeld, Assistant Project Director, or Dr. Laraine Winter, Project Director.

ANCILLARY/PILOT STUDIES

Signatron Project

Eleven interviews have been completed for the Signatron Technology project funded by the National Institute on Aging entitled “Evaluation of Wearability and Acceptance of Mock Locator Device by At-home Dementia Patients and their Caregivers”.  There were nine participants from REACH who had identified wandering as a problem behavior of their relative and were asked to participate in this study.  Of the nine who participated, three had completed their 18- month interview, one had completed the 12- month interview, four were eligible and interviewed prior to the baseline interview and one had been screened ineligible for the REACH Project.  The other two subjects were recruited from the Philadelphia Corporation for Aging’s Family Caregiver Support Program.

Initially, we had proposed to conduct two focus groups on-site at Thomas Jefferson University, each containing 5 to 6 caregivers who would meet on two separate occasions.  However, as we contacted eligible caregivers, all discussed the great hardship of leaving their care recipient to attend these meetings.  We thus modified our procedures and developed a two-phase in-home interview conducted in their home.  A second visit was scheduled approximately one week later to pick up the mock device and to review the wandering behavior log that caregivers were asked to fill out and to obtain information about the care recipient’s reaction to and use of the mock device.

Data that was used from the REACH participants was limited to demographic information (age of CG, age of CR, race of CG, race of CR, number of months of caregiving, years of education of CG, years of education of CR) and the MMSE score.   A report of the study findings was completed and we are now awaiting response from Signatron as to any follow-up or additional information they would like us to explore.  The project has been extended to cover a 17-month period that became effective May 1, 1998 and now ends on September 30, 1999.  The level of funding for the contract has not changed.

Tools Project

The new Home Environment Assessment Protocol instrument has been revised and pilot tested with two caregivers. A telephone screen has also been developed and pilot tested.  The study staff, consisting of two occupational therapists and two interviewers, have been trained. Twelve caregivers have been identified through the Family Caregiver Support Program at the Philadelphia Corporation for Aging. An additonal 8 will be identified from the list of over 100 caregivers who were not eligible for REACH. We are currently in the data collection phase of the project.

PRESENTATIONS AND PUBLICATIONS

REACH Publications

Gitlin, L.N., Corcoran, M., Martindale-Adams, J., Malone, C., Stevens, A. & Winter, L. (in press).  Identifying mechanisms of action:  Why and how does intervention work?  In Schulz et al, Intervention Approaches to Dementia Caregiving.  Oxford University Press.  New York.

Related Publications - Chapters

Gitlin, L.N. (in press).  Measurement considerations in assessing instrumental activities of daily living.  In M. Law, C. Baum and W. Dunn (Eds).  Occupational Therapy Outcomes:  Assessing Occupational Performance Book, Slack, Inc.

Gitlin, L.N. (in press). Adjusting “Person-Environment Systems”: Helping older people live the “good life” at home.  In M. Moss & R. Rubenstein (Eds.), Essays in Honor of M.P. Lawton. Springer Publishing Company. New York.

Gitlin, L.N. (1998).  Testing home modification interventions:  Issues of theory, measurement, design, and implementation.  In R. Schulz, M.P. Lawton & G. Maddox (Eds.), Annual Review of Gerontology & Geriatrics.  Intervention research with older adults.  New York:  Springer Publishing Company.  New York, pp. 190-246.

Gitlin, L.N. (1998).  The role of social science research in understanding technology use among older adults.  In R. Ory & G. DeFriese (Eds.), Self-care in Late Life, Springer Publishing Company. New York, pp. 162-169.

Related Articles

Gitlin, L.N., Corcoran, N., Winter, L., Boyce, A., & Marcus, S. (in press).  Predicting participation and adherence to a home environmental intervention among family caregivers of dementia patients, Special Issue, Family Relations.

Gitlin, L.N., Swenson Miller, K., & Boyce, A. (in press).  Bathroom modifications for frail elderly renters: outcomes of a community-based program.  Technology and Disability.

Gitlin, L.N., Czaja, S & Stevens, A (Summer 1999).  “Caring at home: Supporting the efforts of family caregivers and Alzheimer’s patients.”  Maximizing Human Potential. 

Corcoran, M., & Gitlin, L.N. (Winter 1997-1998).  “Environmental strategies for managing dementia.” Maximizing Human Potential. Vol 5 (3) pp. 2-3, 7.

Gitlin, L.N., Luborsky, M., & Schemm, R.L. (1998).  Emerging concerns of older stroke patients about assistive device use..  The Gerontologist, Vol 3.8 (2) 1998 pp. 169-180.

Schemm, R.L., & Gitlin, L.N. (1998). How occupational therapists teach older patients to use bathing and dressing devices rehabilitation.  American Journal of Occupational Therapy, Vol 52 (4) 276-282.

PRESENTATIONS:

Invited Presentations

Gitlin, L.N.  Methods and issues in social and behavioral intervention research.  Invited seminar, University at Buffalo, Program in Rehabilitation and Science, April 5, 1999.

Gitlin, L.N.  Caring at home: Supporting the efforts of family caregivers and Alzheimer’s patients.  Invited workshop, American Society of Aging, Orlando, FL, March 3, 1999.

Gitlin, L.N.  Evaluation of a community-based assistive device program for low-income elderly renters.  Invited presentation, American Society of Aging, Orlando, FL, March 5, 1999.

Juried Presentations

Gitlin, L.N., Corcoran, M., Winter, L., & Schinfeld, S., Conceptual and methodolgoical challenges of assessing the home environment of dementia patients.” Paper presented as part of the symposium, Environmental Measurement in Aging Research, organized by Dr. Betty Rose Connell, Gerontological Society of America Annual Meeting, Philadelphia, November, 1998.