The United States Cost of Dementia Model: Quantifying Current and Future Impacts of Alzheimer’s Disease and Related Dementias

Project Summary Reliable, reproducible estimates of the costs of Alzheimer’s disease (AD) and AD related dementias (ADRD) are critical for stakeholders and decision makers to fully understand the size of the economic and financial disease burden and to inform priority setting. Dementia cost estimates typically include medical costs and the cost of long term services and support and some indirect costs such as the value of the time of unpaid caregivers for persons living with dementia. Yet, dementia cost magnitude, when based on a limited set of costs, is likely a significant underestimate of costs, particularly as it relates to costs associated with unpaid care provided by family and friends. Time spent caregiving may result in productivity losses and future income and wealth losses. Caregivers may experience health and quality of life impacts and medical costs associated with the challenges of caregiving. Additionally, participation in interventions or clinical trials may impose costs to both persons living with dementia (PLWD) and their care partners and caregivers. Vulnerability to financial and physical abuse is more common among persons living with dementia than for persons without dementia, with important financial and non-financial costs associated with both. We propose to provide national, annual, comprehensive cost estimates of dementia from the societal perspective. Concurrently, we will build the infrastructure to greatly increase national research capacity for generating reliable, reproducible cost estimates and for utilizing innovative methods for analyzing what impacts these costs, how and for whom. We have brought together dementia experts from across the nation and the experience in convening lived experience panels through partnership with the Alzheimer’s Association. We will draw on the significant expertise of our multidisciplinary team in dementia cost estimation using nationally representative survey and administrative data sources. We will build upon decades of investment in validated and sophisticated dynamic microsimulations models for estimates and projections of population health and spending, the Future Elderly Model (FEM) for middle age and older US adults and the ADRD FEM for dementia estimates, and Future Adult Model (FAM) for young to middle- aged adults. We will innovate on these models to build the U.S. Costs of Dementia Model (USCDM) that will fill gaps in cost estimates and facilitate reproducibility and use by the research community. Utilizing accessible platforms for data and code sharing, and a comprehensive pilot program with innovative mentoring, we will expand the capacity of the research community to produce comprehensive, robust and replicable estimates of the costs of dementia in the US over time, and to use dynamic microsimulation and modeling tools to quantify how changes in population health, demographics, care models and systems, public and workplace policies, and new treatments impact costs of dementia today and in the future.