The Dementia DataHub is created by NORC at the University of Chicago, in cooperation with the Milken Institute School of Public Health at the George Washington University and KPMG LLP. The Datahub provides the first-ever publicly available counts and rates of diagnosed dementia by state and county in the United States.
The Dementia DataHub is designed to help health professionals, researchers, policymakers, and the public understand who in Medicare is currently diagnosed with Dementia and where they live. The system contains three levels of dementia case definitions based on our confidence of dementia identification.
The system’s current case definitions are provisional and subject to change in future years. We intend to develop and refine the Dementia DataHub over time based on the input and needs of users.
The Goals of the System
1.
Identify Cases
Create case definitions to identify dementia in administrative data.
2.
Validate & Improve
Validate and improve the dementia case definitions over time using AD/ADRD assessments found in survey and other data sources.
3.
Estimate Dementia
Analyze administrative health care data to estimate dementia: prevalence, incidence, mortality, COVID-19 infections, all cause expenditures among dementia patients, and additional outcomes as suggested by our users
4.
Refine the System
Disseminate system information, evaluate system quality, engage stakeholders, and respond to feedback to continually improve the quality and utility of the system.
Project Support
This project is supported by the National Institute on Aging, one of the National Institutes of Health, under Grant R01 AG075730, “Developing and Evaluating a Surveillance System for Alzheimer’s Dementia in the United States.” The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by NIA/NIH, or the U.S. Government.
Project Collaborators
