Caregiving Policy in 2025
Caregiving is an essential yet complex role, touching the lives of millions who support aging adults, individuals with chronic illnesses, or those experiencing disabilities. The recent policy webinar hosted by the Coalition to Transform Advanced Care (CTAC) illuminated new priorities and challenges within caregiving under the current political administration. Here are key takeaways relevant for caregivers and the caregiving community.
Prioritizing Caregivers in Health Policy
Tom Kaczompis, co-founder and co-chair of CTAC, emphasized that caregiving initiatives have "never been more important," highlighting five primary areas of focus from the Trump administration:
- Making markets impact health and care through integrated services.
- Preventing chronic disease with a focus on community-based initiatives.
- Serving all people with organized care systems, ensuring no one is left behind.
- Rebuilding the behavioral and mental health system to integrate mental and physical health care.
- Supporting aging in place — helping caregivers and high-needs individuals remain safely at home.
According to Tom Kaczompis, CTAC co-founder, these policy directions create "an obligation for us as leaders to ensure support reaches caregivers and those suffering from chronic illness."
Caregiving's Toll and the Need for Support
The Rosalynn Carter Institute for Caregivers (RCI) highlights what gets missed when we only look at the care recipient's diagnosis. As they noted:
"Our health care system and policies typically categorize caregivers by the diagnosis of the care recipient, with little to no information on the stressors faced by caregivers themselves."
Caregiving can profoundly affect emotional, physical, and financial well-being. Data shows caregivers average 30.8 hours per week in direct care and nearly 3 hours per week researching resources, indicating significant physical and emotional demands. Additionally, approximately 37% of caregivers show signs of depression, while nearly half report negative effects on their health and family life.
Beyond One-Size-Fits-All
Caregiving isn't monolithic. The RCI, in collaboration with Duke University, developed comprehensive caregiver profiles capturing the real variation: managing a new diagnosis is different from years of chronic care, which is different from end-of-life decisions. Each demands different support.
CTAC pushes to integrate these realities into healthcare policy — more personalized resources, better care coordination. The gap between what caregivers need and what they get remains wide.
Innovation and Policy: The Path Forward
CTAC's legislative advisor, Brian Lindberg, underscored the importance of modernizing healthcare delivery, advocating for:
- Expanded advanced care planning coverage without cost-sharing barriers.
- Increased integration of social workers to facilitate patient preference-based care.
- Improved Medicare and Medicaid reimbursement to support caregivers directly through models like Guide, enhancing care coordination and financial relief.
Andrew McPherson, CTAC Senior Policy Advisor, noted, "We can walk and chew gum," emphasizing simultaneous advocacy for protection of existing care programs and proactive pursuit of new bipartisan initiatives to support caregivers.
Practical Steps for Caregivers
Independent patient advocates can ease the burden — handling insurance fights, coordinating appointments, managing the paperwork. They don't replace caregivers; they take pieces off the pile.
GiveCare integrates practical caregiver needs: onboarding, resource management, crisis intervention. We map caregiver journeys and offer support proactively. The goal aligns with CTAC's policy focus: meet caregivers where they are, not where systems wish they were.
Dealing with these policy shifts? Share your experiences at info@givecareapp.com.