Data for dementia: State’s brain health registry helps prep for an aging population
An elderly women sits in a nursing home, May 25, 2004. Photo by Fairfax Media via Getty Images
The Virginia Memory Project will catalog dementia cases and caregiving needs to inform policy and programming for aging adults.
As older adults navigate their personal aging experiences, policymakers are considering how they can use state-level policy and programming to smooth the process. That’s why Virginia is turning to data.
The Virginia Memory Project, a statewide epidemiological brain-health registry launched in 2022, uses medical claims data and user surveys to inform policy and resource allocation for older adults with neurodegenerative disorders and their caregivers. Data insights from the project will also help policymakers and public health officials gauge the effectiveness of their efforts and guide preventative measures aimed at mitigating the impact of neurological conditions like Alzheimer’s disease and related dementias, or ADRD.
The project will help public health officials identify high-risk cities, counties or regions within the state where high rates of neurodegenerative diseases persist or are projected, said Rachel Coney, a brain health coordinator at the Virginia Department of Health. Plus, its insights can help drive legislative action, such as price caps on age-related medication or the creation of assistive programs to help improve care coordination in certain areas of the commonwealth.
According to the U.S. Census Bureau, the number of older adults is projected to hit 2.2 million, or nearly one in four Virginians, by 2030.
And a growing older population brings risks, such as neurodegenerative diseases like Alzheimer’s that impact residents’ ability to work, engage with their communities and care for themselves, said Annie Rhodes, founder and director of the Virginia Memory Project and assistant professor at the Virginia Commonwealth University, the institution leading the initiative. In fact, the Alzheimer’s Association estimated that between 2020 and 2025, there will be a 26.6% increase in Medicaid spending for older adults with ADRD in Virginia.
“We are now reaching a time when there’s a lot of new therapeutics and drugs for Alzheimer’s disease in particular,” she said. But access to such treatments relies on an accurate and timely diagnosis.
That’s why states need robust health care and public health systems that are responsive to gaps in services—which is where data comes into play, Rhodes said. The Virginia Memory Project collects information on the prevalence and types of neurodegenerative diagnoses across the state based on all-payer claims data. That data will provide demographic information like age, gender and race to ensure efforts to address aging adults are deployed equitably.
Claims data revealed, for instance, that 40% of people falling into the ADRD category have been diagnosed with an unspecified dementia.
That’s a concerning trend, Rhodes said, because it indicates physicians are not confident in diagnosing neurodegenerative diseases and/or residents are not getting screened for specific dementias. Those insights also suggest lawmakers should invest more in the state’s care coordination infrastructure, area agencies on aging, community-based organizations and other resources to improve the scope and delivery of older adult care. Plus, as more data comes in, that could help health care providers better recognize the symptoms of and diagnose ADRD.
The Memory Project also features a voluntary survey for caregivers and older adults without neurodegenerative diagnoses to record their experiences so researchers can better understand their needs beyond a medical setting. For instance, respondents have reported wanting more education on brain health.
Giving adults not yet diagnosed with ADRD an opportunity to identify current and emerging concerns regarding their brain health will help policymakers adapt to residents’ needs as they age, Coney said. Plus, survey data can reveal if respondents report comorbidities related to aging, which she said is valuable to know because it allows officials to deploy additional resources to address other health risks like diabetes.
A bill awaiting Virginia Gov. Glenn Youngkin’s signature would put state support behind the initiative, which could include funding for future implementation, Rhodes said. Without bill passage, the project’s registry long-term sustainability could be in jeopardy.
“It’s never too early or too late to begin working on brain health,” she said.
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