KEY TAKEWAYS
- Significant disparities persist in Alzheimer's detection, diagnosis, treatment, and monitoring, disproportionately affecting racial/ethnic minorities, women, rural, low socioeconomic groups, and persons with Down Syndrome.
- Addressing disparities in healthcare requires systemic, technological, and policy interventions to ensure timely, accurate, and equitable care for all populations.
What is the current state of equity issues for subpopulations with Alzheimer’s disease in the United States?
Alzheimer’s disease (AD) care is marked by substantial disparities across detection, diagnosis, treatment, and monitoring. Racial and ethnic minorities, especially Black and Hispanic populations, are more likely to develop AD, experience delayed or missed diagnoses, and present at more advanced stages compared to White populations. Rural residents and those with lower socioeconomic status also face higher risk, later diagnosis, and reduced access to care. Women are more likely to develop AD yet may experience diagnostic delays due to sex-specific cognitive reserve masking early symptoms and may receive different or less effective treatments. Adults with Down syndrome (DS) also have a dramatically increased risk of early-onset (e.g., younger than age 65) AD, with average incident diagnosis at 54.5 years. Addressing these inequities requires systemic, technological, and policy interventions to ensure timely, accurate, and equitable care for all populations.
Barriers in detection, diagnosis, and treatment
Several factors contribute to detection and diagnosis in these groups. Limited access to specialists, fragmented systems, and inadequate insurance coverage hinder timely diagnosis and treatment, especially in marginalized and rural communities. Cultural and social barriers including stigma, lack of awareness, and mistrust of healthcare systems reduce engagement and delay care-seeking. These barriers are further exacerbated by standard cognitive assessments which may be biased against those with lower education or from non-dominant cultures, leading to misdiagnosis or underdiagnosis. Additionally, minoritized groups are underrepresented in clinical trials, limiting understanding of disease progression and treatment efficacy in these populations.
For individuals with DS or other intellectual and developmental disabilities (IDD), detection and diagnosis are often delayed or missed due to overlapping symptoms, the lack of validated and tailored diagnostic criteria, and limited awareness among caregivers and clinicians. These groups are also routinely excluded from AD clinical trials. Similar challenges in detection and diagnosis exist for adults with IDD although prevalence is similar to that of the general population.
Despite advances in disease modifying treatments (DMTs), which can delay many personal, societal, and economic costs by slowing progression of AD, use of these medications varies considerably. One study of 842,192 Medicare beneficiaries with a diagnosis of mild cognitive impairment (MCI) or AD found that white race, being male, and from urban areas have significantly higher rates of receiving these treatments than women, non-whites, and rural residents. Concerns about the safety and efficacy of DMTs in persons with DS, particularly due to potentially heightened risk of amyloid-related imaging abnormalities (ARIAs) from the increased prevalence and severity of cerebral amyloid angiopathy (CAA) in this population, has limited access to treatment.
Addressing inequities
Efforts to reduce disparities include culturally adapted diagnostic tools, improved primary care engagement, increased use of blood-based biomarkers, expanded insurance coverage, and increased representation in research. Policy and technology solutions must prioritize equitable access and address social determinants of health.
Early detection, diagnosis, and treatment of AD benefits not only patients and their families, but also payers, the economy, and society at large. However, an ill-prepared and inefficient system often leaves certain groups particularly at risk. This only exacerbates inequities through poorer quality care, reduced quality of life, greater institutionalization, and an increased economic burden.
NEWDIGS Issue Briefs
This Issue Brief is part of a series of reports from the NEWDIGS Consortium on strategy to expand patient access to the new generation of disease modifying therapies (DMTs) for early Alzheimer’s disease.
The NEWDIGS project on Alzheimer’s Disease (AD) is organized around a hypothesis that ensuring safe, effective, and equitable patient access to DMTs for AD will require a shift toward a more primary care-centered model of care including detection, diagnosis, treatment, and monitoring.
AD is the first case study in the Biomedical Health Efficiency (BHE) Project of NEWDIGS, launched in 2026. BHE is focused on re-engineering life science innovation to streamline access for all patients to biomedical products in ways that optimize outcomes while minimizing the use of resources.
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October 11, 2023About the Center for Biomedical System Design
The NEWDIGS Consortium is dedicated to improving health by accelerating appropriate, timely, and equitable patient access to biomedical products in ways that work for all stakeholders.
Based at the Center for Biomedical System Design at Tufts Medical Center in Boston, NEWDIGS aims to help the health care system catch up with the science of biomedical innovation by removing barriers and designing methods to ensure that cutting-edge treatment is made available to patients. The consortium’s collaborators include patients, clinicians, payers, biopharmaceutical companies, regulators, and investors, among others.
Launched at MIT in 2009, the organization moved to Tufts Medical Center in 2022 to be closer to patient care and to longstanding collaborators. Among its successes are payment innovations for durable cell and gene therapies, and regulatory innovations that inspired a European-wide pilot led by the European Medicines Agency focused on Adaptive (Licensing) Pathways.
Its current work integrates insights from all prior projects to advance “Biomedical Health Efficiency” - a new system innovation methodology focused on optimizing outcomes with fewer resources for all patients through improved alignment of stakeholder goals, strategies, incentives, and metrics.