Data Hub
Motivation for Dementia HCBS Data Hub
The Dementia HCBS Data Hub (DH 2) provides a data infrastructure to researchers, providers, and policymakers on datasets, measures, and methods to advance dementia home- and community-based services (HCBS). Structural, process, and outcome measures of HCBS are fragmented by setting, service, and payer and are not specific to dementia. The complex nature of HCBS types and care settings impedes the ability to examine improvements or decrements in dementia HCBS over time. Also, existing efforts to measure the quality of Medicaid HCBS do not mention dementia specifically so that the financing, delivery, and outcomes of HCBS care for persons living with dementia is largely understudied. CaN-D’s Data Hub serves as a clearinghouse with the goal to improve the access, financing, delivery, and quality monitoring of dementia HCBS.
Dementia HCBS Data Hub Resources
Dementia HCBS Data Matrix - Download here
This matrix provides an overview of observational and claims data available for research on dementia home- and community-based. It includes all on-going U.S. observational studies and claims-based data that include dementia measures and at least one measure of HCBS or paid care. The matrix reports metadata for each data source (e.g., formal care, family caregiving, population, timeframe, mode of data collection), details about data access and cost, an overview of relevant variables, and examples of published studies.
Accessing the NIA Data LINKAGE Program
The NIA Data LINKAGE Program (LINKAGE) provides access to Medicare and Medicaid data linked to NIA-supported datasets, and facilitates access via a federally secure and virtual platform for data analysis.
Dementia HCBS Reading List - Download here
A list of journal articles and reports on dementia HCBS and/or LTSS measures.
Dementia HCBS Journal List – Download here
A list of peer-reviewed journals that have recently published dementia HCBS and/or LTSS articles.
Guidance on adding dementia or HCBS measures to existing datasets
Coming Soon!
Dementia HCBS Data Hub Advisors
- Yue Li, Professor, Department of Public Health Sciences, University of Rochester Medical Center
- Tetyana Shippee, Professor, Division of Health Policy and Management, University of Minnesota School of Public Health
- Verena Cimarolli, Director, Health Services Research and Partnerships, Leading Age LTSSCenter @ UMass
- Jeffrey Klein, President/CEO, Nevada Senior Services
- Cara Stepanczuk, Researcher, Health Unit. Mathematica