Caregivers get support, information at conference on Alzheimer's, related diseases
For six years Alzheimer's Texas and Riverbend Church have been offering a free seminar for caregivers: "GPS: A Road Map for Caring for Aging Family Members."
Each year there are new things to learn, especially about the changing science of aging. This year Tam Cummings, a gerontologist who wrote the book "Untangling Alzheimer's" will talk about the various stages of Alzheimer's, including how communications with your loved one changes as the disease progresses.
Annette Juba, a licensed social worker and the deputy director of AGE of Central Texas, will talk about how caregivers need care, too. Debbie Pearson will talk about the pitfalls of aging. Pearson is a nurse, who built a company to serve as client's medical guardians. She also wrote "Age Your Way," to show you how to plan for a time in your life when you might need to rely on others for your care, and "The Blueprint to Age Your Way," which helps you put your wishes and the important information about you in a binder for our caregivers.
When we interviewed Pearson on the launch of her book, she told us, most people don’t make plans and then something happens medically. “Family members are just scrambling. They have no idea what their family member wants. They have not a clue what the resources are.”
The event is free and runs 8:30 a.m. to 2 p.m. Saturday at Riverbend Church, 4214 Capital of Texas Highway. Find out more at alzheimerstexas.salsalabs.org/gpsworkshop.
Austin in the last few years has become the site of more research on Alzheimer's disease. In 2017, Dell Medical School and Seton Healthcare Family became part of the Texas Alzheimer’s Research and Care Consortium. They have been doing research into how to diagnose Alzheimer's earlier. The University of Texas School of Nursing has two studies on Alzheimer's disease and sleep.
Senior Adults Specialty Research has been recruiting people in Austin for an international Alzheimer’s prevention study called the Alzheimer’s Prevention Initiative Generation Program. They need people who have no symptoms of the disease, but because of genetics and age have an elevated risk of developing the disease. If you're interested in enrolling in that study, you can go to generationprogram.com.
Senior Adults Specialty Research is also looking for people ages 50 to 90 who have an early Alzheimer's diagnosis or are concerned about their memory or thinking for the Graduate study, which is testing a medication that is designed to slow the disease. You can find out about that study at sasraustin.com.
Alzheimer's has been a particularly difficult disease to understand. Researchers now believe there might be many causes and risk factors. When we talked to Dr. David Paydarfar, neurology chair at Dell Medical School, about the research he was doing as part of the consortium, he told us, “It’s a bit of a mirage. When we think we have a breakthrough, it turns out it’s not the answer.”
His colleague Dr. John Bertelson, a neurologist at Seton Brain and Spine Institute, agreed, remembering when he was a resident in the late 1990s and thinking that a cure for Alzheimer’s might be five or 10 years away.
“So frequently we think we’re so close,” he said, “but I do not see cure in immediate future.”
Paydarfar says the reason we're not closer to a cure, is we might need to be intervening much sooner, way before anyone is diagnosed, to stop the disease from progressing. Also, he believes there actually might not be one Alzheimer’s. There might be different kinds and the drug treatments that work for one might not work for all. The drugs we’ve been testing might actually have been effective but only for a subset of the disease.