Center for Advancing Sociodemographic and Economic Study of Alzheimer’s Disease and Related Dementias (CEASES-ADRD)

2023. Elham Mahmoudi, PhD. fficiency and Equity in Health Care Use and Costs among Older People with Alzheimer’s Disease and Related Dementia: Medicare Advantage Versus Traditional Medicare.

Alzheimer’s disease and related dementias (ADRD) is a substantial economic, medical, and social burden. Medicare is the primary health insurance for older adults (65+) living in the U.S. Eligible beneficiaries must choose between two different plan types: traditional Medicare (TM) and Medicare Advantage (MA). MA enrollment has doubled in the last decade, currently covering about 45% of all Medicare beneficiaries. This growth has been driven in part by an increasing proportion of Black and Hispanic MA enrollees. While evidence suggests that some MA patient populations have lower health care costs and experience fewer racial/ethnic disparities in care, it is unknown whether this is true for socioeconomically disadvantaged Black and Hispanic Medicare beneficiaries, who are at substantially greater risk of incident ADRD. Racial/ethnic disparity research in health care has been mainly observational and descriptive, thus limiting its usefulness in informing policy. The specific aims of this study are to use innovative econometric causal methods to (1) examine trends and explain differences in health care use and total and out-of-pocket health care costs in MA vs. TM; (2) examine racial/ethnic disparities in health care use and cost between MA and TM. Study results can inform Medicare policies to promote more efficient and equitable health care for Medicare beneficiaries with ADRD. It will also provide preliminary data for an R01 proposal, to be submitted to the NIA, to investigate the same topic using administrative claims data.

Priority Research Areas: Disability, Health Care and Long-Term Care

2023. Emma Aguila, PhD. Education, Occupation, and Cognition of Vulnerable Older Adults.

Recent studies have documented decreases in age-specific prevalence of dementia associated with increases in educational attainment and better chronic disease management over time. Also, mental work demands are associated with higher levels of cognitive functioning and lower cognitive decline. However, little is known about the protective factors associated with the prevalence of dementia for populations with low levels of education. We examine the association between education and mental work demands in the lifetime occupations, and their influence on cognition. We focus on Mexican-origin populations in the United States and Mexico using the Health and Retirement Study (HRS) and the Mexican Health and Aging Study (MHAS).

Priority Research Areas: Cognitive Aging and the Demography of Dementia

2023. Takashi Amano, PhD. Racial/Ethnic disparities in advance care planning among people with dementia.

Receiving a diagnosis of ADRD may encourage the patient and their family members to initiate ACP since it provides supports and resources. Nevertheless, previous studies have shown that vast majority of people with Alzheimer’s disease and related dementias (ADRD) do not engage in advance care planning (ACP) or start too late. This suggests that there exists variations in the presumed effects of receiving a diagnosis of dementia. The effects may be attenuated for racial/ethnic minorities due to limited and culturally insensitive medical and social resources. However, the effects of receiving a diagnosis on engagement in ACP and its racial/ethnic variations have not been empirically examined. Guided by the NIA Health Disparities Research Framework, this pilot project aims to gain a better understanding of the causal relationship between diagnostic labeling of Alzheimer’s disease and related dementias (ADRD) and the process of advance care planning (ACP) in the context of racial/ethnic disparity. It has two specific aims: (1) it estimates Estimate the effects of receiving a diagnosis of ADRD on ACP and (2) it examines racial/ethnic variations in ACP among people with dementia. This proposed project utilizes a longitudinal design with data from the nationally representative survey of the Health and Retirement Study (HRS) and propensity score analysis to gain higher generalizability and minimize the influence of confounding factors. With the design and method, this study will be able to examine the effects of receiving a diagnosis of ADRD on the process of ACP with a pseudo experimental setting. Results would suggest possible strategies to promote ACP after the diagnosis of ADRD.

Priority Research Areas: Health Trends and Disparities

2022. Anna Wu, PhD. Risk of ADRD among first-, second-, and third-generation Latinos in the Multiethnic Cohort (MEC).

The overall objective of this pilot study is to better understand factors driving purported variation in Alzheimer’s disease and related dementia (ADRD) risk across Latino populations.  This prospective analysis will be conducted among 20,093 California Latinos in the well-established Multiethnic Cohort (MEC) Study.  The three specific aims are: (1)  To determine the age and sex-adjusted diagnostic incidence rates of ADRD for 11,413 first-, 6,125 second-, and 2,555 third-generation Latinos. (2) To investigate ADRD risk associations with outdoor air pollution (gaseous and particulate matter pollutants) and to compare associations of established lifestyle factors (education, neighborhood socioeconomic status, marital status, history of hypertension, stroke, diabetes and heart disease, smoking status, physical activity, short/long sleep, body mass index, and diet quality) across first-, second-, and third-generation Latinos. We will also compare hazard ratio (HR) and 95% confidence interval (CI) from Cox regression models for these Latino populations to those of White California MEC participants.  (3)  To estimate the ADRD population attributable risk for lifestyle factors and outdoor air pollution among first-, second-, and third-generation Latinos.  Completion of this pilot project should provide new information on the incidence, as well as lifestyle and environmental determinants of late-onset ADRD for Latinos by generation status.

Priority Research Areas: Cognitive Aging and the Demography of Dementia

2022. Annie Chen. Dynamic Microsimulation Projections of ADRD and Associated Functional Limitations in Taiwan and the United States.

This pilot project develops the Taiwan Future Elderly Model (TFEM) to model cognitive function, functional limitations and informal caregiving; validate the model with observed data; and conduct an initial comparison of ADRD disease burden between Taiwan and the US.  It addresses three of the research priorities of the Center for Advancing Sociodemographic and Economic Study of Alzheimer’s Disease and Related Dementias for the 2022-2023 funding cycle: Health, social and economic costs of ADRD for individuals, families and generations; factors driving variation in ADRD risk and outcomes across populations; international and national trends in and projections of ADRD. This pilot adds an additional country to the growing network of international microsimulation models built on local health and retirement surveys and the Future Elderly Microsimulation software.

Priority Research Areas: Population, Economic and Health Forecasting

2022. Katherine Miller, PhD. The Mediating Role of State Policies Supporting Care Partners of Persons with Dementia on Care Partner Outcomes.

Over six million persons living with dementia in the U.S received unpaid care from nearly 16 million care partners. Demand for care provided in the home by family care partners is expected to increase. Care partners of persons living with dementia generally report worse physical health and high levels of depressive symptoms and care partner burden. Variation in state policies supporting care partners yields heterogenous access to and generosity of services for care partners. Unpacking the potential mediating role of polices intended to benefit care partners is critical to support and improve the health of care partners of persons living with dementia. Our objectives are to: (1) provide systematic documentation of policies supporting care partners of persons living with dementia; and (2) examine association of policies and care partners’ outcomes. This study leverages an existing dataset of policies supporting care partners to expand upon and survey data of nationally representative sample of care partners. This research will advance our understanding of the effects of dementia caregiving on care partners and persons living with dementia by building a database for future research to examine persons living with dementia and care partner outcomes. Moreover, understanding the pathways by which policies and policy interactions impact these outcomes is essential to inform the policy discussions regarding evidence-based supports for care partners of persons living with dementia.

Priority Research Areas: Disability, Health Care and Long-Term Care

2021. Bryan Tysinger, Research Assistant Professor, USC. Dynamic Microsimulation Projections of ADRD in Ireland and the United States .

Projecting the future burden of Alzheimer’s Disease and Related Diseases (ADRD) is of critical importance to understand implications for individuals, families, health systems, and government planning.  Previously, the applicants have developed dynamic microsimulation models in longitudinal panel data to estimate statistical models of aging and predict future outcomes. This pilot has five Aims:  1. Extend and validate the TILDA-based microsimulation to model new outcomes: cognitive function, depressive behavior, functional limitations and time spent in residential care; 2. Extend and validate the HRS-based microsimulation to model the depressive behavioral domain of ADRD; 3. Produce population and subpopulation (gender, education, and race) projections, and compare these projections within and between countries; 4. Recommend best practices for projecting cognition, depressive behavior, functional status, and ADRD to guide other researchers using panel studies similar to HRS and TILDA.  Scope the potential for novel inclusion of biomarkers and laboratory measures in projections; 5. Use the results as a basis for large-scale international study proposal to project future needs, estimate future health and social care costs, and evaluate the effect of different systems and payment models on care, health and economic outcomes. We anticipate three outcomes associated with the pilot aims: (a) Projections of ADRD prevalence, associated depressive symptoms and functional limitations, and associated residential care use in the United States and Ireland, for the population and for subgroups of interest (Aims 1-3); (b) Lessons learned in validating the domains of ADRD will be documented to inform other modelers undertaking similar work, including assessment of how biomarkers and lab data may improve prediction (Aim 4); (c) An R01 proposal for modeling future ADRD prevalence and associated costs in different countries covered by the g2aging family of longitudinal studies (Aim 5).

Priority Research Areas: Population, Economic and Health Forecasting

2021. Karen Fingerman, Professor, University of Texas at Austin. Young Adult Caregivers of Aging Family Members.

More than 40 million adults in the U.S. provide caregiving to older adults and 1 in 4 of these caregivers are young adults aged 18 to 34. Research and interventions for Alzheimer’s Disease caregiving have focused on middle aged and older caregivers. Young adults may have distinct experiences in caregiving and providing care for older family members may be detrimental to future goals (e.g., education) with lasting repercussions on well-being throughout the life course. This pilot study will develop survey instruments and research methodologies to examine this under-researched group. Aim 1 Develop research battery to assess young adults’ caregiving experiences. We will assess the frequency and types of tasks young adult caregivers perform, their role in the family caregiving system and cultural beliefs about caregiving. Aim 2 Develop of assessments of young adults’ caregiving burdens and well-being We will assess implications of caregiving (positive and negative), including burden, loss of goal-directed statuses (e.g., educational pursuits) and subjective perceptions of control. Aim 3 Generate methodologies of daily sampling of caregiving. Intensive data collection will provide insights into caregiving close to the time these tasks occur. Across all aims, we will consider race/ethnicity, gender, relationship to care recipient and intergenerational coresidence. We will recruit a sample of 80 Hispanic, African American or Asian young adults (aged 18 to 34) who identify as caregivers for an older relative with ADRD (i.e., aged 65+). They will complete a 30 minute baseline survey to adapt existing measures and develop new ones to assess young adults’ caregiving experiences. Then, participants will complete brief surveys every week for 5 weeks. Our research team has extensive experience analyzing data intensive assessments. The proposed study may fundamentally shift the paradigm for understanding how family caregiving occurs, embedded in cultural and socioeconomic contexts.

Priority Research Areas: Caregiving

2021. Leah Richmond-Rakerd, Assistant Professor, University of Michigan. Do Mental Disorders Forecast ADRD in Nationwide Administrative Registers?.

Neurodegenerative conditions, including Alzheimer’s disease and related dementias (ADRD), have an outsized impact on disability and loss of independence in older adults. As such, there is a growing need to identify modifiable factors that drive variation in ADRD risk at the population level. We propose to investigate mental disorders as a potential preventable risk factor for later-life ADRD. Using three decades of nationwide health-register data on 1.7 million New Zealand citizens aged 21-60 at baseline, we will test whether mental disorders forecast the development of ADRD in the subsequent 30 years. We will test whether these associations hold across sex and age, across different types of mental disorders, within pairs of siblings matched on family-level risk factors, and after controlling for pre-existing physical-health conditions. Through this project, we will (1) quantify the degree to which preventing mental-health problems in young people might reduce the health and social burden of neurodegenerative diseases, and (2) create exportable tools, including a new linked-sibling data resource and a method for ascertaining ADRD across multiple health registers, that can be used by other ADRD researchers employing linked administrative data in their work. If results of the proposed project indicate that mental disorders forecast neurodegenerative diseases, this would also suggest novel hypotheses about mechanisms that underlie the development of ADRD and that may drive variation in ADRD risk across populations (e.g., inflammation, low education, poor health behaviors, social isolation, or psychiatric medications), to be tested in future basic-science and administrative-register studies.

2021. Sarah Mawhorter, Assistant Professor, University of Gronigen. Housing Transitions Associated with Cognitive Decline.

While existing research addresses the suitability of various housing alternatives for persons with dementia (PWD), little is known about PWDs’ housing transitions over the course of cognitive decline. This study investigates PWDs’ housing transitions using Health and Retirement study data from 2002 through 2016. We find that over half (56%) of PWD move in the years around dementia onset: 28% move once, and 28% move twice or more. Examining various types of moves, we see that slightly over a third of respondents move to another home at some point during cognitive decline, just under a third move into nursing homes, and around ten percent move in with relatives, with overlap between these categories since some PWD move more than once. We find strong patterns by educational attainment and race/ethnicity: Black and Hispanic PWD and those with lower education levels are less likely to move to another home or enter a nursing home than White and college-educated PWD. This suggests the importance of providing support for PWD and their families to transition into different living arrangements as their housing needs change.

2020. Alice Chen, Associate Professor, USC. ADRD Care in New Delivery and Payment Methods.

This study estimates the impact of new payment and delivery models—including accountable care organization models, patient-centered medical care homes, value-based payment modifiers, and merit-based incentive payments – on the health care and drug use and cost for ADRD patients. Results from this research will identify which delivery and payment models are most effective in improving dementia care. They will also inform an R01 proposals that seek to uncover mechanisms for observed improvements in dementia care, such as the restructuring of ADRD care teams, care coordination, and the placement of higher-risk ADRD patients into care management programs.

Priority Research Areas: Care for Persons Living with Dementia

2020. Bryan Tysinger, Research Assistant Professor, USC; Rebeca Wong, Professor, UT Medical Branch. Harmonized Cognitive Measures for International Microsimulation Modeling of ADRD.

This project will extend two existing microsimulation models, the United States Future Elderly Model (US-FEM, based on the HRS) and the FEM-Mexico (based on the MHAS) to incorporate measures from the HCAP supplement and produce population and subpopulation estimates of dementia today and in the future. It will inform an R01 proposal for modeling ADRD that will extend the analysis to potentially include microsimulation models for England, India, and China.

2020. Chandra Muller, Professor, University of Texas, Austin. National Longitudinal Study, 1972 (NLS-72) Record Matching to Centers for Medicare and Medicaid Services (CMS) Records.

This study addresses the social or skill aspects of education that shape cognitive functioning. The study will create new data for analysis of education and early cognition effects on economic security among older people. The matching and analyses will lay the foundation for an R01 proposal to follow-up the NLS-72 cohort to study cognitive aging and AD.

Priority Research Areas: Determinants of Health, Well-Being and Longevity

2020. Karen Eggleston, Senior Fellow; Jay Bhattacharya, Professor, Stanford. Trends and Projections of ADRD in Asia.

This project will extend the current Japanese Future Elderly Model (JFEM) microsimulation model to include cognitive function and dementia. It will use this expanded JFEM to study the social and economic burden of ADRD in Japan, and compare to other FEM for North America and Europe. Existing Asia microsimulation models include those for South Korea and Singapore, with a model under development for Taiwan, and in the planning stages for Hong Kong, the rest of China, and India. The study will project the health and cost implications of cognitive decline and ADRD and implications of long-term care insurance (LTCI) programs in Japan and South Korea.

Priority Research Areas: Population, Economic and Health Forecasting

2020. Mireille Jacobson, Associate Professor; Jason Doctor, Professor; Julie Zissimopoulos, Associate Professor, USC. The Impact of Cognitive Screening on Early ADRD Diagnosis, Treatment and Spending.

This study examines how Medicare plan type affects the likelihood of an early ADRD diagnosis combining both Traditional Medicare Fee-for-service claims and MA plan encounter files. The study will also fill a gap in our understanding of the impact of ADRD diagnosis on differences in health care utilization and spending in MA and Traditional Medicare. It will inform an R01 proposal to improve screening, diagnosis and care for person living with dementia.

Priority Research Areas: Cognitive Aging and the Demography of Dementia