By Catherine MacDonald

A Virginia Commonwealth University-led project cataloging dementia cases and other neurodegenerative diseases across the state will soon be supported by state funding, after its inclusion in the budget signed by Gov. Abigail Spanberger in June.

Led by Annie Rhodes, Ph.D., an assistant professor in the VCU College of Health Professions’ Department of Gerontology, the Virginia Memory Project (VMP) is a comprehensive initiative designed to transform caregiving, brain health and cognitive decline in Virginia. The VMP contains an expansive dataset of information about neurodegenerative diseases and risk factors and uses that information to curate education and resources for the public as well as health professionals. 

Registries for cataloging neurodegenerative diseases are an underutilized strategy to support access to care and information. The VMP was founded in 2021 as the fourth statewide epidemiological registry in the nation. It is the first one in the United States to be explicitly framed using the Centers for Disease Control and Prevention’s Healthy Brain Roadmap and focuses on using data to inform education, policy, workforce development and improve health outcomes. 

“This is a turning point in how Virginia addresses neurodegenerative diseases,” Rhodes said. “By curating highly specialized analytics and datasets for a variety of conditions, including Alzheimer's, Parkinson's disease and multiple sclerosis, the Virginia Memory Project is tearing down silos in public health by focusing on the continuum of brain health and neurodegenerative conditions. We are sustainably and simultaneously supporting caregivers, people with neurodegenerative diseases today, while envisioning a healthy brain in Virginia tomorrow.”

The Virginia Memory Project aims to be the first “responsive” dataset in the country, according to Rhodes. The foundational work to make this happen has already begun at VCU’s Virginia Center on Aging, interdisciplinary hub for aging research, education and community engagement that is part of the College of Health Professions.

"The Virginia Center on Aging is committed to improving quality of life, and serving others through innovation and collaboration,” said Amy R. Darragh, Ph.D., dean of the VCU College of Health Professions. “We are grateful to Gov. Spanberger and the Virginia General Assembly for recognizing the importance of this work, and for providing sustainable funding for the Virginia Memory Project to help ensure our communities across the Commonwealth benefit from more informed decision-making and better access to resources.”

Expanding the Virginia Memory Project’s reach and impact

Richmond Del. Betsy Carr sponsored the bill formally establishing the VMP in state code in 2024. This year, Carr introduced a request to provide the program $600,000 in the two-year state budget, which was approved by lawmakers and signed by the governor in June. 

"VMP is simultaneously building the infrastructure necessary for clear-eyed public health policy crafting, while also building a network that provides support to patients and their families who are undergoing the extremely daunting journey of facing Alzheimer's or related diseases," Carr said.

With the new state funding, the VMP will expand its efforts to collect information from people living with neurodegenerative diseases and their caregivers to more rapidly inform Virginia healthcare policies and resource allocation for affected populations.

Some of the strategies the project will implement include: 

• Increasing the quantity and quality of data collection and research on the prevalence of neurodegenerative diseases and available resources for patients and caregivers in Virginia.
• Training the healthcare workforce, including VCU students and doctoral candidates, in data collection and healthcare case management.
• Conducting educational outreach on healthy brain initiatives for caregivers, people at risk of developing dementia, and the general public.
• Developing stronger partnerships with local nonprofit organizations to share research findings and data-informed resource allocation strategies.

Rhodes and her team, which includes partners such as the Virginia Department of Health and the Department for Aging and Rehabilitative Services, envision a Virginia prepared to champion brain health, caregiving and support for those with neurodegenerative diseases. The team has built VMP from the ground up with the support from the Virginia Center on Aging.

Virginia Memory Project’s groundbreaking approach recognized by national patient advocacy groups

VMP prioritizes a multi-pronged data collection strategy to simultaneously support public health resource allocation and assist individuals seeking entry into the aging network. The Alzheimer’s Association has championed this approach and VMP since its inception. 

“For years, the Alzheimer's Association has worked alongside advocates and policymakers to advance solutions for Virginia families facing dementia,” said Josh Myers, director of government affairs in Virginia for the Alzheimer's Association. “The VMP will provide critical insights into the prevalence of these diseases and help ensure resources reach the communities that need them most. We thank the advocates who shared their stories and the lawmakers who made this progress a priority.”

The impact of the VMP has received national attention, including from Joseph Gaugler, Ph.D., a national advocate for a public health response to dementia. An expert applied gerontologist, he also directs the Public Health Center of Excellence on Dementia Caregiving, where his research focuses on improving support systems for families caring for individuals with Alzheimer's disease and dementia.

“Although over 7 million Americans and 164,000 Virginians are estimated to live with Alzheimer's disease or a related dementia, the prevalence of dementia in our local communities remains largely unknown,” Gaugler said. “The Virginia Memory Project will significantly advance our understanding of the extent of dementia across Virginia's towns, cities and counties, and how services and supports can be targeted to best meet the local needs of people living with dementia and those who care for them.

“In this regard, Virginia and the Virginia Memory Project are spearheading a groundbreaking effort that other U.S. states can and should emulate.”

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