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VCU-led dementia registry project becomes established in Virginia law

The Virginia Memory Project tracks dementia across the state to identify regions and communities most in need of support.

Senior couple playing dominoes The Virginia Memory Project is an online registry to catalog cases of memory loss and to connect people with resources, such as screenings and caregiver services. (Getty Images)

By Olivia Trani

In the United States, about one in ten older adults are estimated to develop dementia in their lifetime, and this number is expected to increase significantly over the next few decades. At Virginia Commonwealth University, a team of researchers, clinicians, and social workers have made it their mission that no person with memory loss or their caregiver goes unaccounted for in Virginia.

Their initiative, known as the Virginia Memory Project, is a partnership with the Virginia Department of Health (VDH) to better understand the collective brain health of the state and support people directly or indirectly impacted by dementia. Through a web-based registry, the project catalogs cases of Alzheimer’s disease and other forms of dementia in the state. The registry also serves as a way to connect Virginians with resources related to memory loss, like screenings, community-based programs, and services for caregivers.

A bill to formally establish the Virginia Memory Project in the state code was recently passed by the General Assembly and approved by Gov. Glenn Youngkin in early April.

“This milestone is a statewide acknowledgment that we need to better understand the true state of memory loss in Virginia, as well as craft sustainable solutions to better support dementia patients and their caregivers. It shows that dementia matters,” said Annie Rhodes, Ph.D., director of the Virginia Memory Project.

Answering the call for data on dementia

The Virginia Memory Project was founded in 2021 by Rhodes while she was working toward her doctoral degree in health-related sciences at VCU.

“When I was a graduate student and research assistant, we were doing all this great work in the community, but we never had a comprehensive understanding of how many people had dementia and how many people were serving as caregivers,” said Rhodes, who is now an assistant professor at the VCU College of Health Professions' Department of Gerontology and the Virginia Center on Aging. “This makes it hard to know if you are moving the needle substantively in terms of reducing the prevalence of dementia in Virginia. Not knowing how dementia is impacting us today also makes it harder to plan for health care needs in the future.”

Rhodes successfully applied for a grant from VDH to establish an epidemiological database for dementia and other neurodegenerative disorders in the state. At the time, the state health department had received funding from the Centers for Disease Control and Prevention to support statewide initiatives focused on brain health as part of the Building our Largest Dementia Infrastructure (BOLD) Act. Backed by VDH and CDC, the Virginia Memory Project became one of four statewide dementia registries in the country, joining ranks with registries in Georgia, South Carolina and West Virginia.

Woman standing in front of a classroom

Annie Rhodes presenting at the Healthy Brain Virginia Partner Meeting in October 2023. (College of Health Professions)

The data collected for this initiative comes from two sources. First, the project has access to de-identified insurance claims data from health care providers across Virginia. This gives the research team a better idea of how many people are diagnosed and being treated for dementia or other related disorders, such as amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), and Parkinson’s disease. Rhodes and her colleagues also developed a confidential 2-minute online questionnaire that any resident of Virginia can fill out, including those without a formal diagnosis or serve as a caregiver to someone experiencing memory loss. The survey includes questions about the person’s health and well-being, as well as risk factors related to dementia.

“Through this survey, we hope to help fill in the most important gaps in dementia, which is people who have historically and contemporarily not been represented in health care,” Rhodes said. “We also wanted to make sure that caregivers were included in this initiative, because you can’t tell the story of dementia without also including the perspective of those who provide care to loved ones with memory loss. Being a caregiver is often as demanding as a full-time job, yet around 83% of caregivers are unpaid family members.”

A mission founded on giving back to communities

Another key component of this survey is to give respondents the opportunity to request health care services or resources related to the health and well-being of their brains. This is where Ashley Staton, MSW, comes in.

“We never want anyone to just be a number on a page,” she said. “That’s why our philosophy is centered around addressing the immediate needs of the people that engage with our project.”

As a social worker and dementia education specialist at the VCU College of Health Professions’ Department of Gerontology, Staton helps respondents find the support they need, whether that is an appointment with a neurologist or memory specialist, clinical trials, community-based programs or caregiver services.

“We also give people access to various educational resources related to dementia, including opportunities to attend an informational webinar or request an expert to give a talk at a place of worship or community center,” she added.

Staton noted that aging and memory loss is heavily stigmatized in the United States, and she believes this project will help break down misconceptions about dementia and initiate conversations many people have a hard time starting on their own.

What’s more, she hopes their work will also help address the health inequities that exist among people experiencing memory loss and cognitive decline.

While Alzheimer’s disease is the sixth leading cause of death for all Americans, it’s the fourth leading cause of death for all Black and African Americans and third for Black and African American men. Nearly two-thirds of all Americans with Alzheimer’s disease are women.

“My passion is working with older adults, but especially Black older adults. Dementia impacts my community two times more than anybody else,” said Staton, who is Black. “We know that women and individuals with lower incomes also have a higher risk of developing dementia.”

Statewide intentions and national attention

Rhodes and Staton envision that the data collected through the Virginia Memory Project will ultimately help policymakers and public health workers identify hotspots, project trends, allocate resources and identify solutions for Virginians with memory loss and their caregivers.

“One of the biggest goals from this project is to better understand what communities are in the most need of resources,” Rhodes said. “For example, if we see counties that have very low rates of dementia, the first question we ask is whether that region has sufficient access to healthcare services and providers with the expertise to diagnose dementia. Alternatively, if we see counties with high rates of dementia, we need to check whether they have enough resources to support that patient population. Having this information allows us to make data-informed, community-centric decisions.”

Group in business casual clothing, standing together and smiling

From left to right: Members of the Virginia Memory Project, including Ashley Staton, Andrea Price, Annie Rhodes, Lesly Alvarez, Dan Bluestein. (VCU College of Health Professions)

“This project means that when we advocate for dementia care, we have the numbers to back us up,” Staton added. “It also means that we can tailor our solutions to the specific needs of a community.”

The team has made their first steps in making this goal a reality by collaborating with Del. Betsy B. Carr of Richmond, who is a member of the Virginia House of Delegates and serves as a member of the advisory board for the Virginia Center on Aging. In the 2024 General Assembly session, Del. Carr sponsored a bill to establish the Virginia Memory Project in the Code of Virginia. The bill passed unanimously in the Virginia General Assembly in late March and was signed into law by Govenor Glenn Youngkin on April 2.

According to Rhodes, this legislation is a testament to how important brain health is to Virginians and a recognition that more work is needed to address this issue. The Virginia Memory Project team hopes that being formally established in Virginia law will open more opportunities for support and resources in the future.

“We're very grateful to Del. Carr taking the time to be a champion for us and shepherd this bill through the General Assembly. She recognizes how essential it is to collect this data and provides these services to her constituents and all citizens in the commonwealth,” Rhodes said.

"The average age of Virginians is increasing, and our commonwealth must be diligent and attentive to ensure we have the infrastructure and information to meet the new demands such a demographic make-up will bring to us. The Virginia Memory Project is a vital step in implementing improved care standards and nurturing better patient outcomes when it comes to Alzheimer's disease, dementia, and neurological degenerative diseases,” Carr said. “Additionally, the work of the Virginia Memory Project will help us reconcile disparities in our healthcare system that all too often result in greatly differing patient outcomes between economic, racial, and geographic demographics."

While this project has been working to support the needs of Virginia residents, this effort has attracted recognition and support from public health organizations nationwide, including the Alzheimer’s Association and the Michael J. Fox Foundation.

"The Virginia Memory Project is indeed an advancement providing crucial data for policymakers, clinicians, and researchers in understanding and addressing Alzheimer’s and all other dementias,” said Joshua L. Myers, director of government affairs at the Alzheimer's Association. “Reliable data will allow the commonwealth to better deploy resources for people living with Alzheimer’s, their caregivers, and the medical community. This information is incredibly important as we enter the era of treatments for Alzheimer’s disease."

“The Michael J. Fox Foundation launched with one goal: to end Parkinson’s disease,” said Ted Thompson, senior vice president of public policy at The Michael J. Fox Foundation for Parkinson’s Research. “The creation of the Virginia Memory Project represents a tremendous step forward in helping policymakers, clinicians and researchers get access to reliable data about people living with neurodegenerative diseases like Parkinson’s — information the field needs to better understand these diseases and how to diagnose, treat, prevent and cure them. We applaud the Virginia General Assembly for passing this critically important legislation and Gov. Youngkin for promptly signing it into law.”