About the Caregiving Compendium
This compendium, developed by leading researchers from the George Washington University Milken Institute School of Public Health and the LeadingAge LTSS Center @UMass Boston, responds to the growing interest in family caregiving policy as part of broader LTSS reform efforts. It aims to be a convening tool and resource for policymakers, researchers, and advocates who are interested in policy solutions to better support family caregivers.
Family Caregiving in the LTSS System
Family caregivers are the backbone of the LTSS system.
Their contributions, often unpaid, exceed the value of Medicaid LTSS spending and are essential to how care is delivered across the country. Caregiving exists within an interconnected system shaped by financing, workforce capacity, and family support.
When workforce shortages, financing constraints, demographic changes, or policy limitations occur, responsibility shifts toward families. Caregiving is therefore not separate from LTSS policy; it is central to it.
At the same time, caregiving is also deeply personal and meaningful. Policy must balance recognition of its importance with support that sustains caregivers, families, and the broader system.
Caregiving Compendium Methodology
This compendium captures major federal legislative proposals introduced, but not yet enacted over the past ten years to support unpaid family caregivers.
Approach
The project team conducted:
- Legislative and policy research
- Review of academic and advocacy literature
- Expert consultation
Proposals were organized using a structured framework.
Scope
The focus is on unpaid caregivers supporting older adults and people with disabilities.
Inclusion Criteria
Included proposals:
- Directly address family caregivers
- Provide substantive policy changes
- Proposed within the last 10 years
Exclusion Criteria
Excluded proposals:
- Do not include caregiver-specific provisions
- Focus only on workforce or LTSS broadly
- Reauthorization of a program without a substantive change
- Legislation that Congress has passed
- Legislation that recognizes family caregivers but does not include substantive policy proposals
Explore the Caregiving Proposals
The caregiving proposals in this compendium are organized across five program types, reflecting the range of challenges family caregivers experience and the different strategies proposed to address them.