Caregiving Compendium Additional Reading
The resources below provide additional context to support a deeper understanding of family caregiving policy, research, and lived experience.
Organized by key topic areas reflected in the compendium, these materials highlight the breadth of evidence shaping federal and state approaches to caregiving—including program design, financial impacts, workplace policies, and national frameworks. Together, they offer insights into how caregiving functions across systems, how policies influence real-world experiences, and where opportunities exist to strengthen support for family caregivers.
Note: These resources are supplementary and do not duplicate reports included in the Policy and Advocacy analyses.
Expand/Enhance Caregiver Programs
- Burns, A., et al. How do Medicaid Home Care Programs Support Family Caregivers? Kaiser Family Foundation. 2025.
- Friedman, F. M. and Tong, P.K. A Framework for Integrating Family Caregivers into the Health Care Team. RAND. November 2020.
- Flinn, B. Medicaid Provides Critical Health Care Coverage to Family Caregivers. AARP Public Policy Institute. 2020.
- Kaye, N and Teshale, S. Medicaid Supports for Family Caregivers. National Academy for State Health Policy (NASHP). October 2020.
- Miller, K.E., et al. The Landscape of State Policies Supporting Family Caregivers as Aligned With the National Academy of Medicine Recommendations. The Milbank Quarterly, Vol. 100, No. 3, pp. 854-878. 2022.
- National Alliance for Caregiving, Act on RAISE.
Policy Brief: The Role of Medicaid in Supporting Family Caregivers. February 2025. - Reinhard, S., et al. Family Caregivers & Managed Long-Term Services and Supports. AARP. July 2016.
- Stein, JA. and Lipschutz, DA. Medicare and Family Caregivers. Center for Medicare Advocacy. June 2020.
Financial Supports for Family Caregivers and Macroeconomic Consequences of Family Caregiving
- Houser, A. Valuing the Invaluable 2026: Family Caregivers’ Contribution Reaches $1 Trillion. AARP Public Policy Institute. 2026.
- Johnson, R., et al. Lifetime Employment-Related Costs to Women of Providing Family Care Urban Institute. 2023.
- Nadash, P., et al. What do Family Caregivers Want? Payment for Providing Care. J Aging Soc Policy. 2024 Jul 3;36(4):547-561
- Society of Actuaries. Informal Caregiving: Measuring the Cost and Reducing the Burden. April 2023.
- The Century Foundation. The Care Imperative: Why Investing in Care Grows America’s Economy. 2023.
- Urban Institute. Unpaid Family Care Continues to Suppress Women’s Earnings. 2022.
- Urban Institute. Economic Impacts of Programs to Support Caregivers. 2020.
Workplace Supports
- Arora, K. and Wolf, D. Does Paid Family Leave Reduce Nursing Home Use? The California Experience. Journal of Policy Analysis and Management. Vol 37 (1). 2017.
- Donovan, S. Paid Family and Medical Leave in the United States. Congressional Research Service. March 2025.
- Ty, D. and Shah, P. Supporting Family Caregiving: How Employers Can Lead. Milken Institute. 2025.
- Nadash, P., et al. Policies to Sustain Employment Among Family Caregivers: The Family Caregiver Perspective. Journal of Applied Gerontology, 42(1), 3-11. 2022.
- Society for Human Resource Management (SHRM). The Caregiving Imperative: Organizational Solutions for Supporting Caregivers and Elevating Business Performance. 2025 and Care and Careers: Navigating Caregiving and Work Responsibilities. 2025.
- Urban Institute. Paid Family Leave: Challenges and Experiences of Family Caregivers of Older Adults. 2021.
- U.S. Chamber of Commerce Foundation. Building Resilience for Caregivers: How Employers Can Support the Sandwich Generation. 2025.
Foundational and National Frameworks on Family Caregiving
- Barkoff, A. Reflections on Caregiving Policy: Progress, Challenges, and Opportunities. Health Affairs. 2025.
- Nadash, P., et. al. Analysis of Public Comments on the National Strategy to Support Family Caregivers Perspectives and Priorities. LeadingAge LTSS Center @UMass Boston. 2023.
- National Academies of Sciences, Engineering, and Medicine (NASEM). Families Caring for an Aging America. 2016.
- National Academies of Sciences, Engineering, and Medicine (NASEM). Supporting Family Caregivers in STEMM: A Call to Action. 2024.
- U.S. Administration on Community Living. Progress Report on Federal Implementation of the National Strategy to Support Family Caregivers. 2024.
- U.S. Administration on Community Living. 2022 National Strategy to Support Family Caregivers. 2022.
- U.S. Administration on Community Living. 2022 National Strategy to Support Family Caregivers: Actions for States, Communities, and Others. 2022.
Public Opinion, Caregiver Voices and Lived Experience
- The SCAN Foundation. Amplifying the Voices of Older Adults. 2026.
- Tell, EJ., et. al. In Their Own Words – Family Caregiver Priorities and Recommendations: Results from a Request for Information. LeadingAge LTSS Center@UMass Boston. 2021.
- Tell, EJ., et al. Building a National Strategy to Support Family Caregivers Findings from Key Informant Interviews and Stakeholder Listening Sessions. LeadingAge LTSS Center @UMass Boston. 2022.
Direct Care Workforce and Relationship to Family Caregiving
Bipartisan Policy Center. Addressing the Direct Care Workforce Shortage: A Bipartisan Call to Action. 2023.
Houser, A. Long-Term Services and Supports Are Becoming Even More Unaffordable for Middle-Class Americans. AARP Public Policy Institute. 2026. AARP. National 50+ Voter Survey on Family Caregiving and Long-Term Services and Supports. 2021.
LeadingAge. Feeling Valued, But Not Seen: Home Care Workers in the U.S. 2022.