From Crisis to Opportunity: The Rosalynn Carter Institute Identifies Public Health Approaches to Better Serve Caregiver Health & Well-Being

Action Plan Calls for Robust Strategy to Support 53 Million Americans

AMERICUS, GEORGIA  – The Rosalynn Carter Institute for Caregiving (RCI) today released a detailed report calling for a comprehensive public health approach to caregiver health and well-being. Without robust strategies and systems to support America’s already vulnerable informal caregiver community, the health, strength, and resilience of unpaid family caregivers will remain at great risk, with long-term repercussions for our nation’s health, economy, and stability. 

“This report makes clear the case that caregiver health should be approached with the same sense of urgency and preventive strategies as other critical issues of public health,” said Dr. Jennifer Olsen, Executive Director of the Rosalynn Carter Institute for Caregiving and a trained epidemiologist with deep experience in emerging health threats.  “A successful public health approach will better treat the needs of caregivers before those needs become emergencies. We need to reach, support, and empower caregivers before they reach their breaking point.”

Recalibrating for Caregivers: Recognizing the Public Health Challenge analyzes shifting demographics, economic impact, and caregiver physical and mental health data, and calls for better understanding of how caregiving status affects health. The report makes a case for breaking down siloes across health care, government, and business to create an infrastructure that better supports caregivers.  

In comparison to other issues commonly accepted as public health challenges – such as the 23 million Americans who have been diagnosed with cancer and 34 million who smoke cigarettes – the report points to significantly fewer resources dedicated to awareness and investment in America’s 53 million caregivers. With the lives of so many at risk, the health and well-being of caregivers must be considered a public health concern of equal measure. 

Considered the invisible frontline of our nation’s health care system, family caregivers can reap great joys from caring for a loved one, but many also find caregiving responsibilities complicated, stressful, and isolating. The global COVID-19 pandemic has only compounded the challenges, cutting caregivers off from traditional supports and sources of respite and increasing disparity across income, race and geography.  

RCI recently surveyed more than 400 caregivers across 46 states about how they were faring during the pandemic. The vast majority – 83 percent – reported increased stress related to caregiving since the start of the pandemic. 

“Caregiving is a complex challenge, with countless angles, and will take all of us working together through a holistic approach to address it,” Olsen continued. “Much like health care, education, poverty, and other complex societal challenges, caregiving is a dynamic issue that begins with the caregiver and their care recipient but interacts with every facet of society.”  

As RCI advocates for reorienting to a systems-approach that accounts for the changing dynamics of American life and better understanding, it is committed to: 

  • Building bridges among researchers and program developers, cutting across differences in disease and populations, to orient toward common solutions.  
  • Engaging partners, including the philanthropic community, to rethink how interventions are developed, how grants are awarded, and how outcomes are measured 
  • Convening likeminded allies building a community of existing and new partners to boost and hasten progress for caregivers and, optimally, reduce burdens borne by employers, the health care system, and families. 

“We look forward to engaging more with various partners, especially caregivers, in the coming months,” Olsen concluded. “We must act with urgency to pursue a new systems perspective. Family caregivers are depending on us.”

WHAT THEY’RE SAYING ABOUT Recalibrating for Caregivers 

“Caregivers are increasingly sacrificing their own health and wellbeing because we have not sufficiently invested in them, with dire ripple effects across our nation’s broader economy and state of health. This new report from the Rosalynn Carter Institute makes a timely, thoughtful case for supporting caregivers as a matter of urgent public health – while also importantly acknowledging the intersectional challenges caregivers face. We’re so grateful for RCI’s continued leadership in visibilizing our nation’s 50-million-plus caregivers, and its commitment to addressing the health and wealth disparities that so deeply affect women, women of color, and low-income families as part of an expanded array of solutions.” 
– Ai-Jen Poo, Director, Caring Across Generations 

“From people of color to millennials, caregiving is shaping the health and wellness of millions of Americans and it is essential that our nation’s public health system recognize this reality. RCI’s championship of caregiving as a social determinant of health is the kind of bold leadership we need to improve health outcomes for families shouldering care responsibilities.” 
– Jason Resendez, Executive Director of the UsAgainstAlzheimer’s Center for Brain Health Equity 

“We support RCI as they spearhead this rigorous work to understand the impact of caregiving on individuals and families. At Sesame Workshop, we know from own work with veteran families in caregiving situations – integrated into RCI’s Operation Family Caregiver program – that caregiving families face unique challenges. Understanding how best to support them is so vital right now, when the pandemic is creating unprecedented challenges for every family.” 
– Dr. Jeanette Betancourt, Sesame Workshop’s Senior Vice President, US Social Impact

“RCI has developed a compelling analysis of the increasingly dire situation facing family caregivers and the compound negative impact of unmet needs on financial, social, physical and mental health. They have built a case for a comprehensive preventive Public Health approach that we at the Coalition to Transform Advanced Care welcome as long overdue. Caregivers of people with serious and advanced illness are among the most stressed. They have multi-dimensional interlocking needs for non-health care services to address the well-being of their loved one and of themselves. We are pleased to partner with RCI to examine the key questions outlined in this report and help develop a critical systems approach to tackle this pressing need.” 
– Jon Broyles, Executive Director, Coalition to Transform Advanced Care (C-TAC)  

Recalibrating for Caregivers sets the stage for an essential shift in caring for those who care for others. As our nation ages and increasingly manages long term, chronic disease, we must shift from a safety net approach for family caregivers to a comprehensive public health approach.  
– Meg Kabat, Senior Director, Atlas Research, Former Director, VA Caregiver Support Program