UF Program Gives Online Support to Alzheimer’s Caregivers

September 19, 2002

GAINESVILLE, Fla. — Caring for Alzheimer’s disease patients, often an overwhelming task, may be easier for family members worldwide thanks to an interactive program developed by University of Florida researchers and available by telephone and the World Wide Web.

The first-of-its-kind program, UF’s Alzheimer’s Caregiver Support Online, is staffed by UF psychology professionals who conduct live, interactive classes on subjects such as stress management, understanding and dealing with memory loss, and managing difficult caregiving tasks, said Robert Glueckauf, a UF professor of clinical and health psychology who directs the program at UF’s College of Health Professions. A message board and regular telephone conferences with experts in Alzheimer’s care also are available so that participants can share comments and ask questions.

Since its launch a year ago, the program has been promoted mainly to caregivers in Florida, which has one of the highest proportions of older adults in the nation.

Based on the success of the service in Florida – more than 2,400 people have called upon the program’s Web and phone services for help each month – UF recently launched a Spanish-language version of the Web site.

In the upcoming weeks they also will offer online caregiving classes facilitated by a Spanish-speaking instructor. Alzheimer’s Caregiver Support Online will be the only exclusively Spanish site of its kind in the United States featuring all Spanish links, written materials and classes. UF researchers hope to raise further awareness among Florida Hispanic caregivers and promote the program nationwide.

“Taking care of an older person with Alzheimer’s typically includes managing potentially injurious behavior to self or others, issuing frequent reminders, and monitoring hygiene and self-care activities,” said Glueckauf, who is affiliated with UF’s Institute on Aging. “Unfortunately, such intensive activities are performed at a high cost to caregivers in terms of physical, financial and psychological resources. Caregivers typically experience reduced social activities, disrupted household routine and relationships, and deterioration of physical and mental health.”

Approximately 4 million Americans suffer from Alzheimer’s disease, a progressive loss of brain cells, which results in memory loss, disorientation, difficulty performing tasks, and changes in behavior and personality. More than seven out of 10 Americans with Alzheimer’s disease live at home, and almost 75 percent of their home care is provided by family and friends, according to the Alzheimer’s Association.

Glueckauf said he established the program to address the substantial gap between caregivers’ needs and available resources, particularly in rural areas. Funding was provided by the Florida Department of Elder Affairs and the Robert Wood Johnson Foundation. The program is managed by the UF Center for Research on Telehealth and Healthcare Communications, which Glueckauf directs.

“Sometimes my husband will have episodes where he doesn’t recognize me,” said Clematis Clark of Jacksonville, whose husband suffers from a memory loss-related illness. “I know exactly how to handle this situation because of the information I’ve received from Alzheimer’s Caregiver Support Online.”

Alzheimer’s Caregiver Support Online’s unique offerings include a series of Internet or telephone courses on learning to add opportunities for personal time and relaxation to caregivers’ schedules and tips for handling episodes of wandering, aggressive behavior, resistance to bathing and confusion. The program’s telephone-based expert forums let caregivers ask questions on issues such as Alzheimer’s disease medication, Medicare rights and what to expect at physician visits.

Caregivers can receive individual consultations from experts by phone or e-mail. One of the program’s guiding principles is that its services are not a substitute for in-person counseling or crisis care. When traditional community resources are unavailable, Alzheimer’s Caregiver Support Online can be accessed any time, even in the middle of the night.

“This program is a bold, innovative step in caregiver intervention,” said Larry W. Thompson, a professor emeritus at Stanford University Medical Center and the Goldman Family professor at the Pacific Graduate School of Psychology. “I think the program will be most useful for individuals who like to use the computer for information or for individuals who have difficulty getting out of the house because of their caregiver duties.”

While caring for someone suffering from Alzheimer’s disease can be challenging and stressful, it also offers rewards, Glueckauf said.

“Caregiving can be a fulfilling activity with opportunities to observe moments of joy, insight and laughter. These may not occur on a daily basis, but they do happen,” he said. “Caregivers have shared with us that caring for a loved one has given them the opportunity to give back the same kind of love and sacrifice the loved one has made for the family over the years.”

For more information on the online caregiver support program in English or Spanish, visit the Web site atwww.AlzOnLine.netor call toll free 1-866-260-2466.