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Research Projects |
Resources for Enhancing Alzheimer's
Caregiver Health (REACH) is an initiative that was established
in 1995 by the National Institutes of Health. Its primary purpose
is to carry out social and behavioral research on interventions
designed to enhance family caregiving for Alzheimer's disease
and related disorders. Six research projects have been funded
through cooperative agreements with the National Institute on
Aging and the National Institute of Nursing Research. These projects
will focus on characterizing and testing the most promising home
and community based interventions for enhancing family caregiving,
particularly with minority families.
In order to facilitate coordination
and cooperation across sites, funds have also been set aside for
a Coordinating Center. Along with ensuring the successful administration
of cooperative activities, the Coordinating Center will develop
and maintain a common database from measures selected jointly
by the six sites. Thus, a major outcome of this initiative will
be the availability of a pooled database, forming the basis for
future analysis of the feasibility and outcomes of different intervention
approaches.
To keep the public informed, the
National Institute on Aging's Public Information Office will communicate
news about the projects and about research on aging in general.
In addition, the National Institute on Aging's Alzheimer's Disease
Education and Referral Center (ADEAR) maintains a major database
on research and resources related to the disease. Listed below
is contact information for REACH's Program Administrators, the
NIA Public Information Office, the Coordinating Center, and the
research sites. Following are brief descriptions of the specific
objectives, study populations, methodological approaches, and
the outcomes of interest of the six research studies as well as
a description of the Coordinating Center
| Marcia Ory, Ph.D., MPH National Institute on Aging Bethesda, MD (301) 402-4156 | Mary Leveck, Ph.D. National Institute of Nursing Research Bethesda, MD (301) 594-5963 |
| Vicky Cahan Bethesda, MD (301) 496-1752 |
Patricia Lynch - ADEAR Bethesda, MD (301) 496-1752 |
| Richard Schulz, Ph.D. Principal Investigator University of Pittsburgh (412) 624-2311 |
Joy Herrington, M.Ed. Project Coordinator University of Pittsburgh (412) 624-9177 |
| Principal Investigator | Institute |
| Louis Burgio, Ph.D. | Applied Gerontology Program
University of Alabama* Tuscaloosa, Alabama (205) 348-7511 *Formally University of Alabama at Birmingham |
| Robert Burns, M.D. | University of Tennessee
Memphis, Tennessee (901) 577-3950 |
| Carl Eisdorfer, Ph.D., M.D. | Center
on Adult Development and Aging
University of Miami Miami, Florida (305) 243-4782 |
| Dolores Gallagher-Thompson, Ph.D. | Veterans Affairs Palo Alto Health Care System
Menlo Park, California (415) 493-5000 x 22005 |
| Laura Gitlin, Ph.D. | Community and Homecare Research Division
Thomas Jefferson University Philadelphia, Pennsylvania (215) 503-2896 |
| Diane Mahoney, Ph.D. | HRCA Research and Training Institute* Hebrew Rehabilitation Center for the Aged Boston, Massachusetts (617) 363-8545 * Formally Boston Medical Center Hospital |
| Richard Schulz, Ph.D. | University
Center for Social and Urban Research
University of Pittsburgh Pittsburgh, Pennsylvania (412) 624-2311 |
Researchers at the University of
Alabama at Birmingham will focus on the common needs of African
American and White caregivers of a family member with Alzheimer's
Disease. One aim of the study is to evaluate the effects of a
caregiver training and intervention package that is designed to
increase the caregiver's ability to manage the care recipient's
behavioral problems, as well as increase the caregivers' ability
to cope with daily stressors through training in problem solving
skills. This intervention will be compared with a minimal support
condition which will receive telephone calls. A second aim of
the study is to assess the effects of the intervention program
on care recipient outcomes including behavioral difficulties and
quality of life. A final aim is to investigate any differences
between African American and White caregivers in skill acquisition
and performance; and any difference in care recipient's responsiveness
to the intervention.
140 caregiver/care recipient dyads
will be entered into the study. All caregivers in the intervention
group will attend a 3-hour group workshop which will be conducted
in area churches. The remainder of the intervention will be conducted
in the homes of caregivers and care recipient. Special attention
will be placed on cultural specificity with workshops being co-taught
by African American and White trainers. The research team includes
two psychologists, a nurse, a geriatrician, and a neurologist.
Contact: Louis Burgio, Ph.D.
Telephone: (205) 934-7914
*Formally University of Alabama at Birmingham
The Veterans Affairs Medical Center
and University of Tennessee are conducting a study examining ways
in which primary care physicians can decrease the burden of family
caregivers of individuals with Alzheimer's Disease. Three interventions
will be evaluated: "information and referral care"
simulates usual care of dementia patients such as providing information
about dementia and making referrals to community resources; "behavioral
care" in which caregivers receive counseling sessions about
behavior management; and "enhanced care" which will
build on the previous approaches by teaching behavior modification
strategies to decrease caregiver stress.
Caregivers of family members with
Alzheimer's Disease enrolled in two primary care settings in Memphis
will be eligible for the study. They will be identified and
asked to participate in the study through their primary care providers.
A total of 240 caregivers, with approximately half being African
American, will be recruited and randomly assigned to one of the
three intervention groups. The interventions will be given in
the context of a primary care visit. Caregiver outcomes to be
assessed include: caregiver burden, depression, life satisfaction,
perceived health status, and utilization of health care for caregiver
and care recipient. The team of researchers for this study include
two geriatricians, an anthropologist/gerontologist, a geriatrics
counselor, a geropsychologist, a psychologist, and two biostatiticians.
Contact: Robert Burns, M.D.
Telephone: (901) 577-3950
Investigators at the University of
Miami are conducting a study looking at the effectiveness of several
innovative interventions that focus on the family. These approaches
combine psychosocial and engineering solutions to the problems
confronted by Cuban American and White American caregivers of
a family member with Alzheimer's Disease. This study will randomize
216 participants (caregivers, care recipients and their families)
to one of three conditions. The first condition is an in-home
intervention involving visits by a therapist to the family on
a regular basis to improve communication, to promote well-being
among family members, and to ease caregiver distress. The second
condition consists of a combination of the above intervention
with a Computer Telephone Integration System. This system involves
a special telephone with a screen that will allow family members
to call up written information, to make family conference calls,
provide respite functions, and to leave messages for one another.
The third condition is a minimal support condition which will
receive telephone calls in addition to the usual care provided
by local Memory Disorders Clinics.
Caregiver outcomes to be assessed
include caregiver burden, distress, perceived social support,
and caregiver satisfaction. A central focus of this study is
to utilize interventions that are considered to be appropriate
with Cuban American and White American populations. Special attention
will be given to cultural specificity in the conduct of these
interventions. This study brings together a senior interdisciplinary
team of scientists/clinicians with expertise in aging, caregiving
for persons with dementia, family and multi-systems therapy and
cultural diversity.
Contact: Carl Eisdorfer, Ph.D., M.D.
Telephone: (305) 243-4782
The Veterans Affairs Palo Alto Health
Care System and Stanford University will be evaluating the effectiveness
of several intervention programs designed to improve the psychological
functioning of Hispanic and Anglo women who are the primary caregivers
of family members with dementia. As a result, this study will
extend the theoretical and clinical understanding of the caregiver
experience to one group of minority families whose proportion
is steadily increasing in this country.
330 female caregivers will be recruited
from the San Francisco Bay area to participate in this research.
They will be assigned to one of several interventions including
a minimal support condition which will receive telephone calls,
an enhanced support group, or a psychoeducational class teaching
skills on how to cope with stress, frustration, anger and sadness.
Participation in any of the three conditions will be weekly for
a 10 week intensive period; then monthly for 8 months, for a total
of one year's involvement in the intervention portion of the project.
In addition, all caregivers will be interviewed at periodic intervals
for a total of 18 months.
The researchers will compare the
programs and how they may work for different groups. Primary
outcome measures will examine symptoms of depression and anger,
caregiver functioning including coping responses and pleasurable
activities, and various dimensions of caregiver burden and social
support. Measures to help explain the changes brought about by
the intervention will also be obtained and will include: self-efficacy,
characteristic style of expressing anger, length of time as a
caregiver, and in the Hispanic group, the level of acculturation.
The team of researchers for this study consists of several clinical
research psychologists (including one who is a bilingual, bicultural
Hispanic), a biostatistician, and a geropsychiatrist. In addition,
consultation will be provided from colleagues in medicine and
sociology, and from a broad variety of community agencies.
Contact: Dolores Gallagher-Thompson, Ph.D.
Telephone: (415) 493-5000 ext.22005
Researchers at Thomas Jefferson University
in Philadelphia will evaluate the benefits of a specialized home-based
program for individuals caring for a family member with Alzheimer's
Disease. The intervention, entitled "Environmental Skill-building
Program" (ESP), will instruct caregivers in using their environment
effectively to minimize functional decline and behavioral difficulties
experienced by the person with dementia. An important feature
of the intervention is that it is standardized and reproducible
and yet responsive to the individualized needs of caregivers and
impaired persons.
A sample of 250 caregivers from diverse
cultural and economic backgrounds who reside with and care for
an individual with mild or moderate dementia will be enrolled
in the study. Participants in ESP will receive up to six, 2-hour
home visits and five telephone contacts by an occupational therapist
over a 20-week period. The occupational therapist will work collaboratively
with the caregiver to 1) identify problem areas; 2) introduce
a combination of environmental strategies (ie: changing the immediate
surroundings through home alterations, removal of objects, and
simplification of tasks); and 3) provide training about the impact
of the environment on dementia behaviors. Anticipated outcomes
include increased use of environmental strategies, improved home
safety, improved caregiver well-being and self-efficacy, and decreased
excess functional dependency and problem behaviors in the individual
with dementia. This study includes a very strong team of researchers
from diverse disciplines with expertise in aging, caregiving for
dementia patients, occupational therapy, home modification, and
environmental assessment.
Contact: Laura Gitlin, Ph.D.
Telephone: (215) 503-2896
*Formally Boston Medical Center Hospital
The focus of this study at Boston
Medical Center is to examine the impact of an automated telecommunications
system on reducing caregiver stress related to disruptive behaviors
of people with Alzheimer's Disease. The system is called Reach
for TLC (Telephone-Linked Care): Caring for the Caregiver. Reach
for TLC is a 24-hour system that speaks over the phone to caregivers
using a computer controlled human voice system. Caregivers will
press designated keys on the touch tone keypad of their home telephone
to communicate with the system. This innovative system will monitor
the primary caregiver's stress and health status weekly and make
recommendations and referrals if necessary, provide a voice-mail
caregiver support network to reduce social isolation, provide
an "ask the expert" call option for caregiving problems,
and offer a respite activity conversation for caregivers to use
when they desire a short break from the person with Alzheimer's
Disease.
The study will be conducted at five
sites with 500 caregivers, some of whom will be either African
American or Hispanic. Participants will be randomly assigned
at each site to usual care or Reach for TLC (which they will use
weekly for 12 months). Caregiver outcomes to be assessed include
caregiver distress from problematic behaviors, depression, perceived
health status, caregiver role, competence, and mastery. The research
team for this study consists of gerontologists from the fields
of nursing, medicine, sociology, health policy, economics, as
well as health care informatics specialists, and a biostatistician.
Contact: Diane Mahoney, Ph.D., GNP
Telephone: (617) 363-8545
The Coordinating Center at the University
of Pittsburgh will work with the five intervention sites and the
National Institute of Health to carry out research on interventions
designed to enhance family caregiving for Alzheimer's Disease.
The Center will bring together expertise from the Department
of Psychiatry and the Epidemiology Data Center of the University
of Pittsburgh. This research team will be responsible for 1)
identifying and compiling background information regarding family
caregiver research, 2) working with the other investigators to
identify, select, and psychometrically evaluate measures to be
used in a common data set, 3) developing a standardized data collection
protocol and data management system, and 4) collecting, editing,
storing, and analyzing all shared data.
Other tasks to be undertaken by the
Coordinating Center include providing technical assistance to
the investigators, monitoring recruitment and retention of study
participants, and providing training to assure consistent implementation
of the common protocol. In addition, researchers at this site
will develop and implement a quality control system for data collection,
prepare and develop all data forms, produce and update a manual
of operations, and devise plans for dissemination of information
resulting from these studies.
Contact: Richard Schulz, Ph.D.
Telephone: (412) 624-2311