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Innovative programs to be tested for Alzheimer's disease caregivers

November 30, 1995

NIA Press Office | 301-496-1752 | nianews3@mail.nih.gov

The National Institute on Aging (NIA) today announced a major initiative to develop and test new ways for families and friends to manage the daily activities and the stresses of caring for people with Alzheimer's disease. Investigators at six institutions -- University of Alabama at Birmingham, University of Tennessee at Memphis, University of Miami, Veterans Affairs Palo Alto Health Care System and Stanford University, Boston University Medical Center, and the University of Pittsburgh -- will participate in the project. They will study innovative approaches, including recently developed telecommunications and managed care programs, for providing caregivers with support, skills, and information.

Called REACH, for Resources for Enhancing Alzheimer's Caregiver Health, the group of studies will be sponsored primarily by the NIA, with additional support from the National Institute of Nursing Research (NINR). Both are components of the National Institutes of Health. Funding will total $2.1 million in the first year.

"Family caregivers are an important national resource and they need special attention," says Marcia G. Ory, Ph.D., chief of the NIA's Social Science Research on Aging program. "This research will test some new techniques and services that may be of great benefit to them, in addition to the current support networks that are now available."

Ory points out that Alzheimer's disease caregivers can be "hidden patients" themselves. They often face a "triple jeopardy," experiencing significant emotional stress, extreme physical and financial burdens, and, in some cases, dealing with apathy or hostile behavior from the person receiving care.

The REACH initiative is intended to address these problems on a larger and more rigorous scale than previous research. "At the end of this project, we will know a lot more about the feasibility and effectiveness of a variety of approaches for helping caregivers," says Ory. Ory is NIA's project officer for the studies. Mary D. Leveck, Ph.D., R.N., is project officer for NINR.

The 5-year effort is a critical part of NIA's support of research on Alzheimer's disease, a devastating neurodegenerative disorder that mostly affects older people and eventually leads to complete dependence. An estimated 4 million Americans have Alzheimer's disease, with slightly more than half being cared for in the community. It is estimated conservatively that between 2.4 million to 3.1 million spouses, relatives, and friends are caregivers, forming the backbone of the Nation's informal long term care system for people with Alzheimer's disease. These numbers are expected to grow significantly as the population ages. This new effort will look primarily at caregivers of older people with mild to moderate Alzheimer's disease and will include a focus on African American and Hispanic families.

The principal investigators and their projects include:

  • Louis D. Burgio, Ph.D., University of Alabama at Birmingham, will look at African American and White caregivers. The project will focus on the common needs of caregivers from each group. Researchers will test a training and intervention package for increasing the caregivers' ability to manage behavior problems of the person receiving care and for improving problem solving skills. The study will examine the effects of the interventions on both caregivers and patients. This study is funded by the NINR. Media Contact: Bob Shepard, 205/934-8934.
  • Robert Burns, M.D., University of Tennessee, Memphis, will test ways in which primary care physicians in a managed care setting can help caregivers in dealing with the behaviors of the person with Alzheimer's disease and managing their own burdens. Four approaches will be evaluated: "usual" care, such as referral to local sources; "information" care in which caregivers receive written materials on behavior management; "behavior" care, in which written information is supplemented with training; and "enhanced" care, which would build on the previous approaches by teaching behavior modification strategies to decrease caregiver stress. Media Contact: Gilbert Hayes, 901/448-4954.
  • Carl Eisdorfer, M.D., Ph.D., University of Miami, FL, will examine the effectiveness of interventions that focus on the family, comparing Cuban American and White American families. An in-home intervention will involve visits by a therapist to the family on a regular basis. The goal of the therapy will be to improve communication and reduce conflict, and to increase the amount of support given to caregivers by other family members. Some caregivers involved in the study also will use a Computer Telephone Integration System, a special telephone with a screen that will help caregivers communicate with community organizations and therapists, make family conference calls, and leave messages for family members, and participate in caregiver support groups. Media Contact: Mitra Zehtab, M.D., 305/243-4829.
  • Dolores Gallagher-Thompson, Ph.D., Veterans Affairs Palo Alto Health Care System and Stanford University, Palo Alto, CA, will evaluate the effectiveness of three intervention programs to improve the psychological functioning of Hispanic and Anglo women caregivers. The women will participate in a class on improving life satisfaction, a class providing training in anger management, or a traditional support group. Researchers will compare the programs and how they may work for different groups. Media Contacts: Irene Ohlendorf, VA, 415/858-3925, and Mike Goodkind, Stanford, 415/725-5376.
  • Diane M. Mahoney, Ph.D., R.N., GNP, Boston University Medical Center, MA, will look at the impact of an automated telecommunications system on reducing caregiver stress from disruptive behaviors of people with Alzheimer's disease. The 24-hour system, which speaks with caregivers over the telephone using a computer controlled human voice, will give advice on how to handle disruptive behavior, include a voicemail network to reduce social isolation, and offer respite to caregivers by offering distracting conversations for the person with Alzheimer's that the caregiver can activate when a short break is needed. Media Contact: Gina DiGravio, 617/638-8491.
  • Richard Schulz, Ph.D., University of Pittsburgh, PA, will head the Coordinating Center for the multisite project. Schulz's group will lead in the development of a common database, identifying the best techniques for measuring and assessing the various interventions. Media Contact: Robert Reteshka, 412/624-4007.

The NIA leads the Federal effort supporting basic, clinical, social, and behavioral research on Alzheimer's disease, aging, and the special needs of older people. The Institute also supports the Special Care Units Initiative, a multisite project to evaluate the effectiveness and costs of special programs in nursing homes for Alzheimer's patients, their families, and nursing home staff. Findings from that research are expected within a year.

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