UF Alzheimer's Web site provides information, support for caregivers

GAINESVILLE, Fla. — Providing full-time care for a loved one with Alzheimer’s disease can be stressful for caregivers and patients alike, but an online project through the University of Florida’s Telehealth program helps caregivers overcome some of those challenges.

“AlzOnline.net is an e-health project with the primary focus of reaching caregivers of elders with progressive dementia by providing information, education and support,” said Jeff Loomis, coordinator of AlzOnline.net and associate director of the UF Center for Telehealth, part of UF’s College of Public Health and Health Professions. “By taking care of our caregivers, we are essentially taking care of the health care system.”

The site provides resources through its information center and is attuned to caregivers’ concerns and interests. If new topics arise, the site’s medical and mental-health consultants post updated information.

One recent area of concern has been to provide resources to Florida’s growing Hispanic population.

“One of the most underserved communities in Florida is the Hispanic community, because they may not access the resources available to them,” Loomis said. “So what we’ve done here at AlzOnline is to make inroads to the areas of the state with larger Hispanic populations by partnering with community leaders, educating them about the disease and giving them a place where they can get information about it, and in turn give back to their communities.”

The site recently was replicated in Spanish, and online education courses soon will be offered in Spanish, Loomis said.

“There has been a rise in the diagnosis of Alzheimer’s disease in the Hispanic community,” he said. “In the Hispanic community, Alzheimer’s disease is looked at as a mental illness, not a progressive dementia, so without education about Alzheimer’s, Hispanic caregivers may not know what they are facing.”

Two new areas have been added to the site. One addresses the activities of daily living, which focuses on the health of the caregivers, who are often overwhelmed by the daily tasks of bathing, grooming and feeding their patients while also caring for themselves.

The second, offered through a partnership with the UF College of Pharmacy, provides information on Alzheimer’s medications. An online personal medication record has been added to the site.

“If you go to the doctor and he says, ‘I want you to take all of your mom’s medications, put them in a brown paper bag and bring them the next time you come in,’ what doesn’t go in the bag are the homeopathic and over-the-counter medications,” Loomis said. “Our personal medication record allows the caregiver or health care professional to record over-the-counter and prescription medications, as well as the herbals and home remedies, in a private, easy-to-access format online.”

The personal medication record is convenient for patients seeing multiple physicians.

Challenges of daily living and medication management may cause someone to be placed in a nursing home because caregivers feel they cannot cope with the daily pressures.

About 75 percent of Alzheimer’s patients receive care at home, and only 10 percent of caregivers seek support and educational services in a face-to-face setting.

“Ninety-three million Americans access their health care information online,” Loomis said. “A high percent of that 93 million said accessing their information online helped them understand their illness better so they could go back to their doctor with the best questions possible so they are best prepared to approach their situation.”

With the rise in gas prices over the past year, the availability of support and information online has become increasingly beneficial to caregivers, said Kathleen Luzier-Bogolea, director of the Family Caregiver Support Program in north Central Florida.

“One of the greatest benefits about this site is the 24-hour availability of useful information over the Internet,” said Luzier-Bogolea, who works with caregivers of patients with dementia and other illnesses. She said caregivers accessing both the English and Spanish portions of the site have commented on its usability and depth of information. About 10,000 people visit the site monthly, Loomis said.

“AlzOnline stays in touch with the elder care community,” Luzier-Bogolea said. “Through that communication, they provide the most accurate and useful information for people in the throes of a debilitating illness.”