Caregiving, Formal & Informal

This report outlines a feasibility study focused on obtaining identifiers for self-directed Home and Community-Based Services (HCBS) users within Medicaid claims data. Financial Management Services (FMS) entities assist individuals in managing the financial aspects of self-directed care, including payroll and billing.

Increasing availability of linked child welfare and Medicaid data can advance research on the intersections of child welfare and Medicaid. The project, Child and Caregiver Outcomes Using Linked Data (CCOULD), developed a research-use dataset combining child welfare records and Medicaid claims for children and families involved in child welfare systems in Florida and Kentucky.

As the United States population ages, a larger proportion of individuals will likely need and use long-term services and supports (LTSS). Much of this support is provided by informal (i.e., unpaid) caregivers. For those that need paid LTSS, most Americans pay out-of-pocket. Some may do so until their personal resources are exhausted, and then rely on the Medicaid safety net.

This Brief presents information about the risk of needing care and associated costs to provide content for policymakers and others considering long-term care financing proposals. It revises a brief that was written in October 2020.

The National Alzheimer’s Project Act (NAPA) requires “the inclusion of ethnic and racial populations at higher risk for Alzheimer's or least likely to receive care, in clinical, research, and service efforts with the purpose of decreasing health disparities in Alzheimer's”.1 In order to meet this requirement, in 2020 the Advisory Council on Alzheimer’s Research, Care, and Services recommended t

Link to Printer Friendly Version in PDF Format (5 PDF pages)

Informal Caregiver Supply and Demographic Changes: Review of the Literature Brenda C. Spillman, Eva H.

Family Structures and Support Strategies in the Older Population: Implications for Baby Boomers

October 2020 Printer Friendly Version in PDF Format (45 PDF pages)

This is the PDF version of the 12 Recommendation Themes from National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers: Report to the National Advisory Council on Alzheimer's Research, Care, and Service.