Coordinating Center on the Economics of Alzheimer’s Disease and Alzheimer’s Disease-Related Dementias: Prevention, Treatment, and Care - Research Projects

The Coordinating Center fosters collaboration among a group of researchers with overlapping interests. This group includes the researchers on five teams that received R01 research grants from the National Institute of Aging (NIA) as part of the Consortium on the Economics of AD/ADRD. It also includes five research teams that are supported with Research on the Economics of Alzheimer's/Dementia (READ) grants, and five researchers who are supported with Early Career READ (EC-READ) grants, that were awarded in a competitive process that was managed by the NBER Center. The R01, READ, and EC-READ projects, along with the names of their principal investigators and summaries of their core research objectives, are listed below.

Research Focus Areas

Policy and payment models that impact access to and quality of long-term services and supports
Economic impact of caregiving for people living with dementia for individuals, families and workforce at the national-, regional-, and/or state-level.
Economic and labor market factors, including household as well as economy-wide factors, that impact the recruitment, training, and retention of healthcare workers in the dementia care
workforce.
Investigations of how institutional factors in health care delivery and/or finance systems influence access, utilization, and outcomes for PLWD and their families.
Economic modeling of the future costs and impacts of AD/ADRD, ranging from studies at the household to the national aggregate level, including the use of artificial intelligence (AI) and real- world data to enhance forecasting and analysis.
Economic impact of prevention and management strategies for dementia, as well as the use of economic incentives, to modify individual or institutional actions.
Investigations of the relationship between labor force participation and other aspects of employment over time on dementia risk and health outcomes.
Economic aspects of drug development for dementia treatments, including the costs, incentives, and barriers associated with discovering and bringing new drugs to market, including issues of resultant access and coverage for patients.

R01/R56 Awards

Strengthening the Dementia Care Workforce: Analyzing Economic Policies’ influence on Workers and their Patients Living with Dementia
Norma Coe (PI), Katherine Miller, Atheendar Venkataramani, Adam Dean, Jamie McCallum, Alon Bergman, Lindsey White

The long-term care industry is one of the fastest growing sectors of the economy, yet the jobs created often come with low pay and poor work conditions. This project estimates the impact of three economic policy levers in improving the lives of the dementia care workforce and their patients: wages, unionization, and staffing regulations.
Slide Presentation from March 6 2025 NBER Meeting

Care for Persons with Dementia in Medicare Advantage and Traditional Medicare: Family Spillovers and Disparities
Lauren Nicholas (PI), Alicia Arbaje, Cathy Bradley, Stacy Fischer, Kenny Lam, Dan Polsky

Medicare Advantage, the managed care alternative to Traditional Medicare, covers nearly half of Medicare beneficiaries. While managed care could improve the care of patients with Alzheimer's Disease and Related Dementias (ADRD) through care coordination and supplemental benefits, regulators have also raised concerns about inappropriate denials of care in Medicare Advantage. This project analyzes how Medicare Advantage enrollment impacts the care of beneficiaries living with ADRD, and how the impact varies across a patient's economic and demographic characteristics.
Slide Presentation from March 6 2025 NBER Meeting

Impact of Medicare and Medicaid Financial Policies on Post-acute and Long-term Care for Persons Living with Dementia
Cyrus Kosar (Co-PI), Momotazur Rahman (Co-PI), Elizabeth White, Pedro Gozalo, Vincent Mor, David Grabowski, Lacey Loomer

This project examines how healthcare financing and policy affect utilization and outcomes for people living with dementia, using 15 years of Medicare claims and clinical assessment data. It focuses on the following policy variables: certificate of need regulations, the expansion of Home and Community-Based Services (HCBS) funding, provider supply constraints, Medicare Advantage enrollment, Institutional Special Needs Plans (I-SNPs), and post-acute care reimbursement structures.
Slide Presentation from March 6 2025 NBER Meeting

Role of Home-based Medical Care and Telemedicine in Care and Outcomes of Dementia and Coexisting Conditions in Public and Private Medicare
Amresh Hanchate (PI), Mia Yang, Stephanie K. Nothelle, Bruce Kinosian

Many people living with dementia simultaneously manage other chronic conditions that necessitate complex care regimens. These co-occurring conditions may additionally inhibit people's ability to leave home to access care. Thus, the availability of home-based medical care and telemedicine may be particularly valuable in improving treatment and outcomes for people living with dementia, and in mitigating the burden on caregivers. This project uses Medicare administrative data to examine the effect of the 2020 expansion of telemedicine on patient care and outcomes.
Slide Presentation from March 6 2025 NBER Meeting

Disparities in Undiagnosed and Misdiagnosed Dementia and the Impact on Health Care Utilization and Costs – A Novel Approach using Probabilistic Dementia Classifications
Péter Hudomiet (PI), Cheryl Damberg, Maria DeYoreo, Gabriel Hassler, Michael Hurd, Hannah James, Jodi Liu, Susann Rohwedder, Debra Saliba

Delayed diagnosis of Alzheimer’s Disease and Alzheimer’s Disease-Related Dementias (AD/ADRD) implicitly delays the treatment and care of people in earlier phases of these conditions. This project develops and applies to research a novel classification method to more accurately quantify AD/ADRD diagnostic errors and delays. It uses this new AD/ADRD classification tool to assess the timing or delay in AD/ADRD diagnosis, and how the timing may vary among people with different socioeconomic circumstances.
Slide Presentation from March 6 2025 NBER Meeting

READ Awards

Effect of Labor Market Policies on Care and Outcomes for People with Cognitive Impairment and Their Caregivers
David Cutler (PI), Hailey Brace

This project examines how labor market policies affect the care of people with cognitive impairments and their caregivers. It focuses on the effects of minimum wages, work rules like the Fair Labor Standards Act, and immigration policy on the formal long-term care services used by people living with cognitive impairment, and on the resulting health outcomes for these individuals. A companion project under development will explore the effects of policy on formal and informal caregivers.

Disparities in Medicaid Managed Long-Term Services and Supports for Older Adults with ADRD: Evidence from Wisconsin
Corina Mommaerts (PI), Lauren Bishop, Laura Dague, Ari Ne’eman, Yulya Truskinovsky

This project investigates the effects of Medicaid managed care for long-term services and support (LTSS), comparing outcomes for both people living with dementia and those without dementia. The project focuses on Wisconsin, where a voluntary Medicaid managed LTSS program (Family Care) was gradually rolled out between 2000 and 2019. The project will explore differences in program adoption (relative to traditional Medicaid) across the population, differences in LTSS use before and after program implementation and, specifically, the causal effect of managed LTSS on the use of in-home and community-based services versus nursing home services.

Access to High-Quality SNF Care For Medicare Advantage Enrollees With Dementia
Tamara Konetzka (PI), Betsy Cliff

This project investigates the effects of Medicare Advantage on post-acute care for Medicare beneficiaries with AD/ADRD, focusing on the use of skilled nursing facilities. It considers the effect of Medicaid Advantage enrollment on skilled nursing facility utilization, relative to other post-acute care options, and on the quality of skilled nursing facility used.

The Financial Consequences of Spousal Loss in the Context of Alzheimer’s Disease and Related Dementias
Gopi Shah Goda (PI), Joanne Hsu, Lauren Nicholas

This project examines the effect of one spouse's AD/ADRD diagnosis on the health and financial circumstances of their surviving partner after death. It analyzes the trajectory of health and finances over the period beginning before a spouse’s death, comparing households where the spouse has an AD/ADRD diagnosis to those without an AD/ADRD diagnosis, and following the trajectory of finances through the spouse's death. The study will also explore how AD/ADRD may differentially affect the financial circumstances of surviving spouses with different pre-widowhood socioeconomic characteristics.

Waterborne Lead Exposure and Cognition
Brian Beach (PI), Joseph Ferrie, Aaron Reuben, and Martin Saavedra

Individuals with higher childhood lead exposures, many years later, are more likely to have AD/ADRD listed as a primary or contributing cause of death on their death certificates. This project drills down on the causal mechanisms underlying this prior finding. Specifically, the project explores the effects of lead exposure on cognitive impairment and AD/ADRD-related outcomes as they develop across the life course. It involves constructing a dataset of lead exposure in the United States (covering around 60 percent of the US population); and then linking the lead exposure variables to AD/ADRD-related measures in other publicly available databases, such as cognitive impairment, labor market underperformance, independent living difficulty, and receipt of disability benefits.

The Role of Job Quality in Cognitive Risk and Retirement Timing
Dawn C. Carr (PI), Katy (Qiuchang) Cao (PI), Rebekah Carpenter

Job quality is linked to health outcomes as people age, yet few studies have systematically examined modifiable job quality factors protective against Alzheimer’s Disease and Related Dementias (ADRDs). This study uses a newly developed dataset that leverages a linkage between the Health and Retirement Study (HRS) and multiple indicators of job quality, drawn from publicly available datasets (e.g., Occupational Information Network, American Community Survey) for all biannual waves of the HRS (1992-2022). First, we identify specific cognitively protective job quality indicators (CPJQIs) at midlife (ages 51–55) that are associated with reduced ADRD risk at age 70. Next, accounting for occupational selection, we evaluate the impact of each identified CPJQI on (a) odds of retirement before respondents’ Social Security full retirement age (FRA), and (b) the total number of months respondents retired prior to FRA.

Surrogate Endpoints, Scientific Discovery, and the Economics of Therapeutic Innovation in Alzheimer’s Disease and Related Dementias
Emma Dean (PI), Johnny Huynh (PI)

Alzheimer’s disease and related dementias (ADRD) affect more than six million Americans, yet effective therapies remain limited despite substantial scientific and commercial investment. This project examines how regulatory policy and scientific discovery shape the pace and direction of ADRD drug innovation. We analyze how the FDA’s use of amyloid-plaque reduction as a surrogate endpoint affected firms’ R&D decisions and the composition of the drug pipeline, including whether this pathway encourages investment in some mechanisms of action while discouraging others. We also evaluate how major scientific discoveries influence trial initiations and therapeutic diversity. Using a global drug development database, we combine descriptive analyses, quasi-experimental methods, and simulation to assess how evidentiary standards and emerging science interact to shape ADRD drug innovation.

Quantifying the Physical, Mental, and Socio-Economic Impacts of Alzheimer's Disease on Spouses: New Evidence from Large-Scale Administrative Data
Maria Polyakova (PI), Victoria Udalova

Family plays a central role in shaping the experiences of aging. Any health shock not only affects the patient but also reverberates throughout the family unit, taking a physical, emotional, and financial toll on family members. The effect on families is likely to be particularly pronounced for health shocks that lead to a pronounced decline in independence, as happens with the progression of Alzheimer’s Disease and Related Dementias (ADRD). The ways families manage sharp changes in health can have profound effects on both the patient’s well-being and that of their caregivers. Despite the intricate relationship between family dynamics and health outcomes at older ages, public policies and much of the existing research in the U.S. have predominantly focused on individual patients rather than the broader family context. This study will examine the familial and social rather than clinical experience of disease onset at older ages among older couples in the United States.

The Effect of Prior Authorization in Traditional Medicare Home Health on People Living with Dementia
Jeffrey Marr (PI), David Meyers (PI)

Medicare home health is critical for many people living with dementia. However, there are also concerns about the fraudulent billing of home health care. As a result, the Centers for Medicare and Medicaid Services have been testing the use of prior authorization for home health care services in traditional Medicare. Using administrative data and a difference-in-differences design exploiting the staggered adoption of this program across six states, we will estimate the causal effect of traditional Medicare home health prior authorization on health care use and outcomes for people living with dementia. Our project will investigate (1) the effects on home health utilization (2) the effects on health outcomes, like hospital and nursing home admission and (3) the spillover effects on the home health utilization of people living with dementia who have Medicare Advantage.

Understanding and Addressing Market Failures in Drug Development for Alzheimer’s Disease and Alzheimer’s Disease-Related Dementias
Olivier Wouters (PI), Amitabh Chandra, Matthew Vogel

Despite decades of scientific effort, treatment options for Alzheimer’s and Alzheimer’s disease-related dementias (AD/ADRD) remain limited. This project aims to improve understanding of the economics of AD/ADRD drug development and to identify market failures that impede innovation. First, using public and proprietary datasets, we will estimate the cost of bringing a new AD/ADRD drug to market, accounting for expenditures on both successful and failed candidates. We will also generate updated estimates of clinical trial success rates and durations. Second, we will characterize the technological maturity of AD/ADRD therapeutic targets using bibliometric methods and compare the maturity of each class with levels of public investment (NIH-funded basic research) and private investment (industry-funded clinical trials). This will allow us to assess whether capital has primarily been allocated to immature or established technologies and to evaluate whether public investment has corrected for market failures (e.g., underinvestment in basic science) or reinforced patterns of herding. Overall, we aim to generate evidence that can inform more effective innovation policy.

EC-READ Awards

The Impact of Increasing Payments to Insurers for Covering Individuals with AD/ADRD on Enrollment, Access, and Use in Medicare Advantage
Mark Meiselbach (PI)

In 2020, CMS re-introduced AD/ADRD to the risk-adjustment formula for Medicare Advantage plans to account for the previous systemic underpayment for AD/ADRD enrollees. This project explores whether the 2020 risk-adjustment payments expanded access to AD/ADRD services and specialists for those enrolled in Medicare Advantage. It analyzes the impact of the reform on (1) Medicare Advantage enrollment among people with AD/ADRD diagnoses, (2) the inclusion rate of AD/ADRD specialists in the plans, and (3) service utilization, including AD/ADRD-related office, outpatient, and home health visits.

The Effect of Hearing Aid Coverage Mandates on Cognitive Decline
Benjamin Ukert (PI)

Hearing loss, which affects two-thirds of Americans over the age of 70, is associated with an increased risk of cognitive decline and dementia. Traditional Medicare does not cover hearing aids, but some state Medicaid programs do. This project examines the impact of hearing aid access on cognitive decline and dementia, using data from the National Health and Aging Trends Study (NHATS) data. The project analyzes the effect of Medicaid hearing aid coverage requirements on various outcome variables related to dementia, including the self-reported results of cognitive tests, such as the clock drawing test, orientation memory, and executive function.

Billing Hassles and ADRD
Riley League (PI)

This project uses the Massachusetts All Payer Claims Database to analyze denied health insurance claims and appeals, comparing the experience of people living with AD/ADRD to those without AD/ADRD. It will quantify the prevalence and variability of denied insurance claims from AD/ADRD patients compared to non-AD/ADRD patients; assess the impact of claim denials on subsequent healthcare utilization by AD/ADRD patients; and explore any variability in claims denials and impact across people with different socioeconomic characteristics.

The Hidden Costs of Care: Parental Dementia and its Impact on Work and Retirement
Zhixiu Yu (PI)

Adult children often serve as informal caregivers for parents with AD/ADRD, leading to significant financial and career trade-offs. This project explores how caregiving responsibilities affect decisions about work, retirement, and Social Security claiming behavior. It will examine who takes on these caregiving roles; how caregiving affects full-time or part-time employment, hours worked, and the timing and type of Social Security claims; how these effects vary across demographic groups; and how the impacts of dementia caregiving compare to other long-term care needs.

Timing of Dementia Diagnosis: Implications for Medicaid Enrollment and Financial Planning
Fangli Geng (PI)

The timing of an AD/ADRD diagnosis plays a pivotal role in shaping care pathways, determining resources utilization, and influencing patient and caregiver outcomes. An earlier diagnosis allows for more proactive planning, decreasing the risk of a crisis-driven care transition. This project quantifies the delays in dementia diagnosis and its variation across socioeconomic groups, and examines the effect of diagnosis timing on subsequent outcomes, including long-term care service use, Medicaid enrollment, and financial planning.

Employment Policy and Dementia Care Pathways: Evidence from Paid Sick Leave Mandates
Katherine Wen (PI)

Early identification of AD/ADRD improves clinical management and yields economic benefits. Individuals, however, may delay evaluation of memory concerns because taking time away from work, either for themselves or to accompany a family member, entails monetary and nonmonetary costs, and leave from work may be unpaid. Paid sick leave (PSL) mandates are designed to reduce the time and income costs of seeking care. This project assesses the prevalence of PSL access among adults with cognitive impairment and examines whether PSL mandates impact memory-related care-seeking behaviors, as well as the timing and setting of AD/ADRD diagnoses.

Substance Use, Genetic Risk, and the Long-Term Incidence of Alzheimer’s Disease and Related Dementias: Evidence from Historic Excise Taxes on Alcohol and Tobacco
Spencer Perry (PI)

This project examines the long-term causal effects of smoking and alcohol use on the incidence and severity of ADRD, with a focus on individuals with elevated genetic risk. To isolate the effects of smoking and drinking from other unobservable determinants of health, it leverages historical variation in state cigarette and alcohol excise taxes as a natural experiment. Using longitudinal data from the Health and Retirement Study linked to state excise tax histories and genetic risk markers, it estimates how tobacco and alcohol use shape later-life cognitive outcomes and whether genetic vulnerability moderates these effects.

State Medicaid Policy Variation and Its Impact on Dementia Care: Building Evidence Through a Novel Generosity Index
Indrakshi Roy (PI)

Alzheimer’s disease and related dementias impose major health, financial, and caregiving burdens on older adults. Medicaid is the primary payer for long-term services and supports, yet eligibility rules, coverage generosity, and administrative barriers vary widely across states, creating uneven access and complicating efforts to measure Medicaid’s impact. Policymakers have expanded Home and Community-Based Services and managed care, but evidence of causal effects remains limited, in part due to endogeneity: sicker individuals are more likely to spend down and qualify for Medicaid, confounding analyses. This pilot addresses these gaps by building the first comprehensive, reproducible database of state Medicaid policies relevant to dementia care (2016–2022) and creating a Medicaid Generosity Index for Dementia Care. Linking this index to Medicare claims will enable rigorous quasi-experimental analyses of how policy variation affects Medicaid enrollment, care use, LTSS patterns, and outcomes such as readmissions and mortality. This resource will support more equitable, evidence-based dementia care policy.

The Impact of Medicare Advantage on the Adoption of Consumer-oriented Health Information Technology and Health Outcomes in MCI/ADRD
Zhang Zhang (PI)

People with AD/ADRD face complex multimorbidity and fragmented care, while the rapid development of consumer-oriented health information technologies (HIT) offers new opportunities for disease management. However, people with mild cognitive impairment (MCI) or AD/ADRD continue to face barriers to adopting and sustaining these technologies, and the role of insurance payment structures in shaping this access remains unclear. This project will examine how the transition from Traditional Medicare to Medicare Advantage plans affects HIT adoption and health outcomes among people with MCI/ADRD. Findings will provide real-world evidence to inform payment policy reform and the design of sustainable, technology-enabled dementia care models.

The Impact of ADRD on Intergenerational Transfers
Jack Chapel (PI)

Alzheimer's disease and related dementias (ADRD) pose substantial risks to wealth through high care costs and impaired financial decision-making. These risks may influence the financial support that parents provide to their adult children, a dynamic that is intensifying as the Baby Boomer generation oversees the largest wealth transfer in United States history. This project examines the impact of dementia on intergenerational transfers to one’s children and grandchildren. Using longitudinal data from the Health and Retirement Study, the study aims to estimate the effect of dementia incidence on financial transfers and housing arrangements; the mediating role of long-term care costs and informal caregiving responsibilities will be explored.