Virginia dementia registry project poised to become state law

A Virginia Commonwealth University-led project cataloging dementia cases and other neurodegenerative diseases across the state is poised to be codified into law, pending Gov. Glenn Youngkin’s signature, through a bill passed by the General Assembly this year. 

Founded in 2021 by now-VCU professor Dr. Annie Rhodes, the Virginia Memory Project is a partnership between the university and the Virginia Department of Health to better understand the brain health of Virginia residents. Rhodes said it works by cataloging cases of the diseases and the number of caregivers available for residents into a web-based registry; it’s one of four statewide dementia registries in the country backed by the Centers for Disease Control.

The intention, said Rhodes, is to use the collected data to help policymakers and public health workers identify where the diseases are most prevalent, determine where to allocate resources and decide how to craft sustainable solutions and policy for Virginians with memory loss and their caregivers. 

A bill introduced and passed unanimously this session by Del. Betsy Carr, D-Richmond, would formally establish the project in state code. 

VCU Senior public relations specialist Olivia Trani said if the bill is signed into law, it would be a statewide acknowledgment of the importance of brain health and care, and a recognition that more support is needed to address the issue. 

Dementia isn’t just something that happens when you get older, Rhodes said. Some cases are genetic, she said, but many cases are conditions of health inequity and are more prevalent in low-income, mostly communities where people of color have been “historically and contemporarily excluded from equitable access to care.”

“This is a lifespan perspective problem,” Rhodes continued. “Finishing high school, living in a place that doesn’t have air pollution, having access to hearing aids, having access to mental healthcare — all of these really complex factors go into preventing dementia and even to symptom reduction.”

According to a 2020 report in medical research journal the Lancet, Black individuals in the United States are twice as likely to have dementia, while people who are Hispanic are one and a half times more likely. Both populations were shown to have less access to health and diagnostic care. 

The report also showed that if there was enhanced equity and proper resource allocation for dementia, the global prevalence of dementia could be reduced by 40%.

Social worker Ashley Staton contributes to the project by filling those gaps and connecting residents impacted by the diseases with health resources such as screenings, community-based programs and caregiver services. Staton said a lot of her work also involves breaking the stigma surrounding the diseases.

“It’s difficult for a family member to accept. … Imagine going to see your grandmother and she recognizes you and then two weeks later you go to see her and she doesn’t know who you are,” she said. “All of that is very hard to accept at the moment and it gets worse over time.”

Another aspect of the project tracks the number of caregivers available to those with dementia, which Staton said is another issue that needs more attention, as they can be difficult to access. Staton said caregiving can be like a full time job, yet around 83% of caregivers are unpaid family members. The problem, she said, is compounded when adding in the stigma that family members may have about the disease.

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“From the caregiver perspective, taking care of someone like that is a heavy burden and so sometimes there’s guilt around that,” Staton said. “Most caretakers are in a sandwich generation, so they’re taking care of their parent and a child or another family member.”

While there are resources available to help get access to or be paid as a caregiver — an option available through a state Home and Community Based Services waiver — Staton said people may either not be aware of it or they might have to wait a long time if they apply.

Support infrastructure is also lacking, Rhodes added. While there is a waiver system in place, the mechanisms are not sufficient in a rural area without a workforce.

“That’s what caregivers tell us every day,” Rhodes said. 

However, the pair is hopeful their project will be a strong solution towards recognizing and addressing these problems, made stronger by the legislation that they expect Youngkin to sign into law. 

Rhodes said registries can be very helpful, particularly to support equitable resource allocation throughout the state. Not only can it show hotspots where the disease is prevalent, she said it can also identify “cold spots” where little-to-no dementia is found, even though there are a lot of older people in the area. 

“Having this robust data informed registry and resource to show this need does exist helps us prove our point and get those resources out there,” Rhodes added. 

So far, the project has identified over 700,000 cases of dementia across Virginia. Rhodes said anyone over 18 can enroll in the project by taking a confidential two-minute survey.

“There is no small way to help,” she said. “A huge way to help us [is] to enroll in the Virginia Memory Project.”