Recognizing and Supporting Informal Caregivers: A Key to a More Sustainable Health System
By Hope Glassberg, President of Decipher Health Strategies, Shira Hollander, Partner at Tripp Hollander Advisors, and Kate Freeman, Director at Coral Health Advisors
As the U.S. population ages rapidly, with 82 million Americans projected to be over 65 by 2050, the demand for long-term services and supports (LTSS) is growing. Yet, the formal caregiving workforce alone can't meet this need. Increasingly, family members and friends are stepping in to serve as informal caregivers to help older adults remain in their homes and communities. These unpaid caregivers contribute an estimated $600 billion in value to the health care system annually, according to AARP.
These informal caregivers face unique challenges: high stress levels, financial insecurity, and limited access to training and resources. As policymakers seek cost-effective health care solutions that prioritize consumer choice, supporting informal caregivers emerges as a bipartisan opportunity to enhance home and community-based care options.
1. Financial Support Matters
Many caregivers reduce work hours or leave the workforce altogether. Existing Medicaid consumer-directed programs in states like Florida and Connecticut allow individuals to pay family caregivers, but access is uneven. Federal tax proposals like the Credit for Caring Act, which offers a credit of up to $5,000, aim to address this gap.
More broadly, Medicare could pilot a demonstration to compensate family caregivers delivering care to beneficiaries with complex needs. Coupled with caregiver tax credits, paid leave, and flexible work arrangements, these efforts could stabilize families and retain caregivers in the workforce.
2. Training and Wraparound Supports Are Essential
Unlike professional caregivers, informal caregivers often receive no training or guidance yet manage medications, support daily living needs, and navigate complex health systems. A national Caregiver Support Network could provide standardized training, peer support, respite coordination, and condition-specific resources, building on proven models like the REACH program and the CMS GUIDE model.
These wraparound supports don’t just benefit caregivers; they also improve outcomes for care recipients and reduce institutional care needs.
3. Include Caregivers in the Care Team
Informal caregivers are rarely included in formal care planning even though they know the patient best. Innovations in care delivery like Hospital at Home and the GUIDE dementia program show the power of formally integrating caregivers into care teams and fostering better coordination between caregivers and the care team.
Policies should require the inclusion of caregivers in care planning meetings at the patient's request and ensure their input is documented in health records. These actions both respect caregivers’ roles and improve care continuity.
The Bottom Line
Informal caregivers are a vital but under-supported pillar of the health care system. Strengthening financial supports, training, and formal care integration can unlock better outcomes for families and reduce system-wide costs. As we move toward a more community-oriented and person-centered care future, investing in caregivers isn't optional, it’s essential.