The Changing Landscape of Caregiving

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:

1. Making markets impact health and care through integrated services.
2. Preventing chronic disease with a focus on community-based initiatives.
3. Serving all people with organized care systems, ensuring no one is left behind.
4. Rebuilding the behavioral and mental health system to integrate mental and physical health care.
5. Supporting aging in place, crucially assisting caregivers and high-needs individuals to 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 the importance of recognizing caregiving's nuanced impacts beyond merely the diagnosis of the care recipient. 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.

A Nuanced Approach to Caregiver Experiences

Understanding the nuances of caregiving is vital to providing tailored support. The RCI, in collaboration with Duke University, developed comprehensive caregiver profiles capturing varying caregiving experiences. For instance, caregivers may face challenges such as managing new diagnoses, coping with ongoing chronic conditions, or navigating end-of-life decisions.

CTAC emphasizes integrating these nuanced experiences into healthcare policy, advocating for increased access to personalized resources and improved care coordination, crucial for sustaining caregiver well-being.

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 play a crucial role in alleviating caregiver burdens by facilitating communication, coordinating care, and protecting client rights. Their role complements caregiving by navigating healthcare complexities such as insurance negotiations, medical appointments, and financial management, directly easing caregiver strain.

The GiveCare app integrates practical caregiver needs, from onboarding and resource management to crisis intervention, providing tailored guidance. By mapping caregiver journeys, the app proactively offers personalized support and tools, aligning closely with the caregiving policy focus articulated by CTAC.

Are you a caregiver navigating this changing landscape? Share your experiences and resources at [email protected].