A Living Laboratory: Monitoring Alzheimer’s Disease in its Earliest Stages

Someday soon, Georgia Williams hopes to see her picture on the wall at the Emory Brain Health Center.

”I get so full and so excited to say I’m part of a trailblazing team that’s going to be the benchmark for something that’s going to happen all over the world,” Williams says. “You guys need to put a picture of us on the wall out there and put our names beside it because we’re the first group.”

Williams is a participant in the center’s Cognitive Empowerment Program, a first-of-its-kind research program that aims to better understand the early stages of dementing disorders like Alzheimer’s disease.

The group’s work is helping researchers better understand the disease progression as well as strategies and interventions that keep symptoms at bay.

“Our real goal here is to help empower people to live the best lives that they can for as long as they can – people with mild cognitive impairment and their care partners,” says Heather Johnson, director of the Cognitive Empowerment Program.

Allan Levey, MD, PhD, the director of the Emory Alzheimer’s Disease Research Center, says some 50 million people in the United States have Alzheimer’s pathology but are asymptomatic. That means their brains show physical changes, but people don’t have symptoms of a cognitive disorder.

“This is a chronic disease where it may take decades to develop to the point where it overcomes an individual’s resilience,” Dr. Levey says.

The Cognitive Empowerment Program operates as a “living laboratory,” allowing researchers to observe people with mild cognitive impairment and memory loss two times a week. Researchers monitor the disease’s progression among participants and interventions are tested to determine what’s truly effective.

At the beginning of the program, a cognitive baseline is established for each participant. During the year-long program, participants:

• Complete paper-and-pencil cognitive assessments
• Answer questions about their well-being and emotional health
• Complete cognitive brain training on computers
• Learn memory and compensatory strategies
• Participate in guided exercise classes
• Meet for group talk-therapy sessions
• Eat a Mediterranean diet

While participants are at the center, sensors and cameras record their gaits and movement. This allows researchers to track changes.

“There is some preliminary research that shows structured activities like this help slow down progression, but we want to bolster that field of knowledge,” says Stephanie Vyverberg, a nurse practitioner who serves as the clinical liaison for the Cognitive Empowerment Program.

“As we gather data on their physical activity and participation in the program, the researchers will use the information to determine whether or not these lifestyle interventions are making a difference, whether or not it’s slowing down the progression of the disease, whether or not they’re feeling more empowered and engaged,” Vyverberg says.

The Cognitive Empowerment Program is not a one-way street. There are benefits for both researchers and participants. Program participants and their care partners learn strategies to apply in their everyday lives.

“For me personally, I just want to make sure that I can be the very best caregiver that I can be because he is so awesome,” says Lyn Regan, who is Steve Balch’s care partner. “I don’t want to get impatient, and I don’t want to get discouraged. I want to make sure there are resources that can help me be the best I can be.”

Like Williams, other participants are pleased to know the work they’re doing now will make a difference in the future.

“We were involved in other clinical research studies, and to know there’s research with this and maybe we’re helping to contribute a little bit toward that program is gratifying,” says Charlene Willis, whose husband Don is a participant in the program.

“It might not help us that much, but maybe it will help people in the future who are facing the diagnosis,” she says.

Emory researchers work diligently to uncover the cause of Alzheimer’s disease and to improve treatment options by leading clinical trials. Thanks to volunteers from our community, both with and without Alzheimer’s disease, we’re making headway and accelerating Emory’s efforts to find a cure.

Visit Emory Healthcare’s website for more information on the diagnosis of Alzheimer’s disease, treatment options and research support for patients and caregivers. Click below or call 404-778-7777 for more details.

Emory University and the Emory Brain Health Center have partnered with Georgia Public Broadcasting (GPB) on a television series, “Your Fantastic Mind,” which features compelling stories about brain-related health and wellness.

Your Fantastic Mind began airing Season 2 in September 2020 on GPB’s statewide television network. The Emmy-winning news magazine-style show highlights patient stories and reports on cutting-edge science and clinical advances in neurology, neurosurgery, psychiatry, sleep medicine and rehabilitation medicine.

For a complete listing of Season 2 episode air dates and times, visit the Your Fantastic Mind web page.

Season 1 of Your Fantastic Mind examined topics including sleep apnea, obsessive-compulsive disorder, Alzheimer’s disease, stroke, PTSD, Huntington’s disease, migraines and video gaming disorder, which has been designated a mental health disorder by the World Health Organization.

Jaye Watson is the show’s host, writer and executive producer. She is an Emmy- and Edward R. Murrow award-winning veteran Atlanta journalist and video producer for the Emory Brain Health Center.

The Emory Brain Health Center uniquely integrates neurology, neurosurgery, psychiatry and behavioral sciences, rehabilitation medicine and sleep medicine and transforms patient-centered care for brain and spinal cord conditions through research and discovery.

Bringing these specialties together allows more than 400 researchers and clinicians from different areas to collaborate, predict, prevent, treat or cure devastating diseases and disorders of the brain more rapidly. These collaborations are demonstrated in numerous centers and programs across the Brain Health Center, including the Epilepsy Center, Pituitary Center, Stroke Center, Treatment-Resistant Depression Program and Veterans Program.

Emory’s multidisciplinary approach is transforming the world’s understanding of the vast frontiers of the brain, harnessing imagination and discovery to address 21st century challenges.

Learn more about comprehensive, diagnostic and innovative treatment options at the Emory Brain Health Center.