Last month, at the National Kidney Foundation Patient (NKFP) Summit, caregiving took center stage as a critical yet often underrecognized part of kidney disease and transplant care.
Melina Piñeyro, Senior Manager of Health Programs at the National Alliance for Caregiving (NAC), shared insights from NAC’s research alongside her own personal caregiving experiences, highlighting both the scale of caregiving in the United States and the urgent need for stronger support systems.
Today, more than 63 million Americans are caring for a loved one—nearly one in four adults. As medical care continues to shift from hospitals into the home, caregiving is not only growing in size, but also in complexity. Family caregivers are increasingly responsible for managing medications, monitoring symptoms, coordinating care across multiple providers, and navigating insurance systems—often without adequate preparation. Despite taking on these medical and nursing tasks, only 22% of caregivers report receiving any formal training—most often relying on guidance from medical professionals or personal relationships—leaving many to navigate complex care responsibilities without consistent or sufficient support.
NAC research shows that caregivers frequently feel unprepared for their role, receive inconsistent information from healthcare providers, and struggle to navigate complex medical and insurance systems. Many also report feeling invisible in care processes and decision-making, despite being essential to patient outcomes. The impact is significant: nearly half of caregivers experience financial strain, alongside emotional stress and physical health challenges.
These gaps become even more pronounced in transplant care. In many transplant centers, having a caregiver is a requirement for eligibility, yet structured training and support for caregivers remain limited. Families are expected to manage highly specialized care—before, during, and long after transplant—often without clear guidance.
Drawing from her own experience supporting her mother before transplant and through transplant evaluation as well as her mother-in-law through kidney failure and dialysis, Pineyro underscored how overwhelming these journeys can be. In both cases, much of the caregiving role had to be learned in real time—piecing together information, navigating appointments, and adapting to changing medical needs without consistent or accessible guidance. This is reflected in the scope of responsibilities caregivers take on: 70% monitor their care recipient’s health conditions, 64% communicate with providers, and 58% advocate for their loved one’s needs across healthcare, community services, and government systems. Language barriers and limited culturally relevant resources further compound these challenges.
Throughout the session at the NKFP summit, caregivers echoed similar experiences. Many described navigating healthcare systems “blindly,” learning through trial and error while simultaneously providing care. Participants emphasized the need for earlier education in the disease process, stronger communication from providers, and better access to resources such as nutrition counseling, mental health support, and community-based services.
At the same time, the discussion highlighted opportunities for meaningful change. Strengthening primary care systems, expanding access to early education and nutrition support, and integrating caregivers into care teams from the point of diagnosis can significantly improve outcomes. Policy advancements such as the adoption of caregiver training services also signal growing recognition of caregivers within healthcare systems.
A powerful reminder of caregiving’s impact came through shared stories, including that of Khalen Saunders and his mother, whose family’s experience navigating kidney disease underscored the resilience and complexity of caregiving relationships.
The key takeaway from the session was clear: caregivers are not a secondary part of the healthcare system; they are essential partners in care. Yet too often, they are asked to manage complex responsibilities without the training, information, or support they need.
Investing in caregivers through earlier education, stronger healthcare infrastructure, expanded community resources, and supportive policies is not just beneficial– it is necessary. By recognizing and supporting caregivers as integral members of the care team, we can improve outcomes for patients, families, and the healthcare system as a whole.
To learn more and/or to access our transplant resources: https://www.caregiving.org/transplant-caregiving/
Learn more about the HOLD Act: https://www.caregiving.org/wp-content/uploads/2026/04/Support-for-Understanding-the-HOLD-Act-for-Transplant-Caregivers_April-2026.pdf
