When Leonard Berg, MD , then a neurologist at Washington University School of Medicine in St. Louis, noticed memory problems among his older patients in the 1970s, he refused to dismiss the problems as part of “normal aging” or senility but instead set out to understand what was happening in their brains. More than four decades later, the large-scale dementia research project Berg started at WashU Medicine is still going strong.
That study, the Healthy Aging and Senile Dementia program, is one of the longest-running longitudinal studies of Alzheimer’s disease and has enrolled more than 1,877 people since its inception. The program has just been renewed with an award of $32 million over five years from the National Institute on Aging, part of the National Institutes of Health (NIH). The renewed funding will support the study through 2031 — which will be its 45th year — and allow investigators to focus more on prevention of Alzheimer’s and on enrolling a wider range of participants to find a way to effectively treat and prevent this devastating disease.
“Forty years ago, we couldn’t confirm Alzheimer’s until after death, when the brain was studied under the microscope,” said John C. Morris, MD , the Harvey A. and Dorismae Hacker Friedman Distinguished Professor of Neurology and principal investigator of Healthy Aging and Senile Dementia since 1998, when he took over leadership from Berg when he retired. “Because people have volunteered to come to us year after year and across multiple generations, we have learned the disease starts silently in the brain long before memory fails. Our goal now is to stop the disease process before it causes brain cells to die. Moreover, we need to be able to do that for all groups of people because Alzheimer’s occurs in all races and ethnicities.”
The program’s initial funding enabled Berg and colleagues to successfully establish the Alzheimer Disease Research Center (ADRC) at WashU Medicine in 1985 as one of the first 10 such centers in the U.S. The ADRC later was generously endowed by Charles F. and Joanne Knight. The Knight ADRC is WashU Medicine’s hub for Alzheimer’s and related dementia research, supporting long-term participant studies as well as work on biomarkers, brain imaging and genetics to support treatment and, ultimately, prevention.
Since its inception, the center has yielded discoveries that have transformed how Alzheimer’s disease is understood, diagnosed and addressed. Berg and colleagues developed the Clinical Dementia Rating, which Morris later refined and which is now the worldwide standard for determining whether or not dementia is present and, when it is, its severity. The finding by Morris and colleagues that Alzheimer’s-related brain changes could be present in people who are currently without memory symptoms led to the establishment in 2005 of the Adult Children Study , led by Morris, to follow middle-aged people who had a parent with Alzheimer’s. The study aims to define who is likely to develop the disease and determine the triggers that cause symptoms to appear.
With its renewed funding, the Healthy Aging and Senile Dementia program will examine whether some biomarkers of Alzheimer’s may vary between Black and white participants, which would indicate that tools to diagnose the disease may not work equally well across racial groups.
The new funding supports two goals that build on this premise. First, the team will broaden who takes part in the study, which, like most clinical research, has historically drawn mostly white, highly educated volunteers with overall good health. Since 1998, Morris has worked to make the Knight ADRC’s research more representative of the population of St. Louis, raising the proportion of Black study participants from 3% to 17%.
“Research is how we learn, how treatments improve and how hope becomes progress. I participate for my daughters, for families like mine, and as a Black woman who knows representation matters.” Nicole Garrison, Knight ADRC research participant
With the new funding, the team aims to expand a pilot study that enrolled about 40 participants in north St. Louis to include 300 people with varied education, income levels and health histories. The team plans to bring a mobile clinic into neighborhoods to collect data, blood and other tissue samples from volunteers, who have the opportunity to be connected to health services if they need them.
“A long history of mistrust in medical institutions as well as practical issues such as absence of transportation have discouraged many community members from participating in research at our medical center, so we’re taking the research to the community,” Morris said. “The community members who volunteer will give us their time, their blood samples and their trust, so we must give back to them.”
Second, the researchers plan to track how patients in non-research clinical care settings who are receiving newly available Alzheimer’s treatments are responding to them. The goal is to gain insight into the real-world impact of these therapies, which have been shown to slow Alzheimer’s progression in some people, outside the carefully controlled realm of clinical trials.
The goals of the multigenerational research initiative resonate strongly with Nicole Garrison, a pharmacist from Lake St. Louis and Knight ADRC participant. Garrison has seen Alzheimer’s impact generations of her family. Her grandfather died of the disease. Her father, a Navy veteran, and each of his siblings were eventually diagnosed.
As a research participant since 2025, Garrison has undergone cognitive tests, brain imaging, blood draws and spinal taps. She said she participates in research in part because Black Americans are disproportionately affected by Alzheimer’s and yet are underrepresented in research. Garrison also appeals to policy leaders for wider access to blood-based Alzheimer’s tests , a far less invasive option than brain scans or spinal taps.
Although her father and grandfather weren’t able to benefit from studies like those Garrison is part of, she hopes her daughters might.
“None of it guarantees I’ll personally benefit,” Garrison said of participating in Alzheimer’s research. “That was never the point. Research is how we learn, how treatments improve and how hope becomes progress. I participate for my daughters, for families like mine, and as a Black woman who knows representation matters.
“Alzheimer’s disease may run in my family, but this is where it runs out.”
About WashU Medicine
WashU Medicine is a global leader in academic medicine, including biomedical research, patient care and educational programs with 3,100 faculty. Its National Institutes of Health (NIH) research funding portfolio is the second largest among U.S. medical schools and has grown 78% since 2016. Together with institutional investment, WashU Medicine commits over $1.6 billion annually to basic and clinical research innovation and training. Its faculty practice is consistently among the top five in the country, with more than 2,550 faculty physicians practicing at 200 locations. WashU Medicine physicians exclusively staff Barnes-Jewish and St. Louis Children’s hospitals — the academic hospitals of BJC HealthCare — and Siteman Cancer Center , a partnership between BJC HealthCare and WashU Medicine and the only National Cancer Institute-designated comprehensive cancer center in Missouri and southern Illinois. WashU Medicine physicians also treat patients at BJC’s community hospitals in our region. With a storied history in MD/PhD training, WashU Medicine recently dedicated $100 million to scholarships and curriculum renewal for its medical students, and is home to top-notch training programs in every medical subspecialty as well as physical therapy, occupational therapy, and audiology and communications sciences.