Nearly seven million Americans are currently living with Alzheimer’s disease in the US— and another 11 million provide unpaid care for people with Alzheimer’s and related dementias (AD/ADRD) — making dementia one of the nation’s most pressing public health concerns. To help meet this challenge, many states and local communities have planned for and instituted a range of innovative policies, programs, and models of care to provide greater assistance to people living with Alzheimer’s and those who care for them.

Despite the growth of these AD/ADRD-focused services and programs in recent years, widespread awareness of their effectiveness remains limited. That’s a problem because, without the ability to evaluate program performance or effectiveness, it may be difficult to plan for financial sustainability, scale successful programs, or adapt innovations to other states, regions, or settings.  The State Alzheimer’s Research Support Center (StARS) aims to address this data gap. StARS is a new research center at the University of Minnesota School of Public Health (SPH), created in partnership with the Johns Hopkins School of Nursing and Emory University’s Rollins School of Public Health, with funding support from the National Institute on Aging. The initiative will create a national data infrastructure that can be used to evaluate the effectiveness, accessibility, and equity of state and regional dementia care services.

“There are incredible state and regional dementia care and support programs. With StARS, we can coordinate and centralize data, spur policy innovations to finance and expand these programs, and enhance the overall well-being of people living with dementia and their caregivers,” says project lead Joseph Gaugler, SPH Distinguished McKnight University Professor and Robert L. Kane Endowed Chair in Long-Term Care and Aging. “We know anecdotally that there are a lot of very good state and regional programs out there that are making a difference in the lives of people with Alzheimer’s and Alzheimer’s-related dementias and their caregivers. But unfortunately, policymakers, providers, and researchers have lacked the information about these programs that would demonstrate their effectiveness and assist efforts to replicate and disseminate them in other communities.”

“By building the infrastructure to coordinate and centralize data, the goal of StARS is to foster innovation in dementia care, spur policy innovations to finance and expand successful programs, and enhance the overall well-being of people living with dementia and their caregivers​,” Gaugler says.

Quincy Samus, PhD, Associate Director at the Johns Hopkins Center for Equity in Aging, is the lead at the  Johns Hopkins School of Nursing. Regina Shih, PhD Professor of Epidemiology is the lead at Emory Rollins School of Public Health.

With dementia disproportionately impacting people of color, StARS will prioritize pilot projects that evaluate the impact of dementia care services in under-resourced communities, which will ensure that data from underrepresented groups are included in the national data infrastructure.

The StARS center will focus on four main areas:

• Establishing partnerships. StARS will work with state and regional partners to identify dementia care programs, policies, and data sources and assist in developing collaborations between key providers within states.
• Supporting dementia-care pilot projects. StARS will provide funding and support for up to 16 states to conduct pilot projects that assess the structure and outcomes of dementia care services, emphasizing health disparities in underserved communities.
• Building a statewide and nationwide data infrastructure. StARS will link and merge multiple data systems from various state and national sources, enabling comprehensive evaluation and comparison of Alzheimer’s and related dementia care services across states.
• Developing and implementing a dissemination strategy. StARS-generated data and information will be shared with states, key administrative agencies, and underserved communities via a network of seminars, conferences, publications, and peer-reviewed journals.