New National Research Highlights Gaps—and Solutions—for Improving Alzheimer’s Care Equity
Study urges action on improving data, digital infrastructure, and insurance models
Despite years of progress in understanding and treating Alzheimer’s disease and related dementias (AD/ADRD), a highlights the persistent inequities that continue to impact how care is delivered—and to whom. Drawing from expert recommendations presented at the , the study identifies major areas where change is urgently needed.
The research, led by Chanee Fabius, PhD, MA, an associate professor in Health Policy and Management, and published in March in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, points to three critical levers for improving care equity: better and more inclusive data infrastructure, expanded use of health information technology, and greater attention to how public insurance programs shape access and quality of care.
“These disparities don’t exist in a vacuum,” said Fabius. “They’re the result of historical and structural barriers, as well as policy gaps that prevent people—especially those from minoritized communities—from receiving the support they need.”
A major theme throughout the report is the need for more representative data to better identify AD/ADRD populations and address inequities related to factors such as the social determinants of health. Most national datasets underrepresent key populations, including people from racial and ethnic minoritized communities, and older adults living in rural areas. While technology like the tool and datasets such as the offer valuable insights, researchers note that more granular and inclusive data are essential.
“Without reliable information on where, how, and for whom care is falling short, we can’t design effective interventions,” said Fabius.
The study emphasizes linking data across local, state, and federal levels will allow for a more comprehensive understanding of care access, utilization, and quality, especially when examining social and environmental influences like housing or transportation insecurity.
The pandemic accelerated the adoption of telehealth and digital tools, but those benefits haven’t reached everyone. The study highlights how limited broadband access, digital literacy, and funding gaps in long-term care settings continue to create a “digital divide.”
In particular, providers such as adult day centers often lack interoperable health record systems. Innovations like —a low-cost app that tracks medication, mood, and appointments—show promise for expanding access to coordinated care, especially for under-resourced centers.
“Technology can bridge gaps in care, but only if we invest in making it accessible,” said Fabius. “That means everything from broadband infrastructure to training and technical support.”
The paper also draws attention to how different models of public health insurance, including Medicare Advantage (MA) and Medicaid, impact access to services. While MA enrollment is growing—especially among Black and Hispanic older adults—many enrollees find themselves in lower-rated plans with fewer options.
MA plans, often administered by private insurers, may limit networks to reduce costs, sometimes at the expense of quality. Moreover, persons living with dementia are more likely to disenroll from these plans due to unmet care needs.
Meanwhile, Medicaid plays a central role in providing long-term services and supports (LTSS), but because eligibility and benefits vary by state, so too does access. The report notes that some states are experimenting with new approaches—such as Washington’s state-run long-term care benefit—but many gaps remain.
The authors offer several actionable steps to improve care equity for persons living with AD/ADRD and their caregivers including expanding representative data by investing in inclusive data collection and integration strategies that capture race, ethnicity, geography, and socioeconomic factors. They also recommend closing the technology gap and supporting the implementation of health information technology across LTSS providers and rural settings, particularly through policies that fund broadband access and digital training.
And finally, the researchers suggest aligning insurance with equity goals by examining how MA and Medicaid plans provide care to different populations and discuss regulatory changes necessary to deliver high-quality, person-centered care to all. Since the aging population is increasingly diverse, the study stresses the importance of addressing these inequities now.
This perspective was supported by funding from the National Institute on Aging and is part of a broader effort to inform dementia care research and policy across the country.
