States Are on Threshold of a Caregiving Emergency Report Finds

PRINCETON, New Jersey—Nearly half of the states in the U.S. (48%) are on the brink of an unpaid family caregiving emergency, according to findings released from a new study conducted by Columbia University Mailman School of Public Health, sponsored by Otsuka America Pharmaceutical, Inc. (Otsuka). The study shows unpaid family caregiving is either “critical” or at “high risk” in 24 states.

“America’s Unseen Workforce: The State of Family Caregiving”—the latest in a research series sponsored by Otsuka advocating for the visibility and support of family caregivers—analyzed a multitude of factors at the state level to assess how differing demographics, health care infrastructures and economic conditions impact unpaid family caregivers.

In the context of policy changes and budget cuts, state-level decisions are crucial in addressing the caregiver crisis for both the paid and unpaid caregiving workforce. The new report includes an illustrative state-by-state heatmap based on a scorecard of the family caregiving landscape to raise awareness for the value of family caregivers and inform decision-making and political advocacy to support them.

“This report illuminates that at a local level, it is repeatedly the family caregiver who shoulders the immense pressures generated by health care shortages and rising dementia cases,” said John McHugh, lead researcher and adjunct assistant professor of health policy and management at Columbia University Mailman School of Public Health. “Without strategic, state-level initiatives, the strain on our health care system and economy will only intensify. It is important for policymakers to recognize the value of family caregivers and consider the long-term savings that can be achieved by acting now.”

Key Findings

Caregiving is comparable to cornerstone industries: These new data show that in several states, the equivalent value of labor generated by unpaid family caregivers surpasses the economic value generated by cornerstone industries:

• Florida, categorized as “critical” on the scorecard, has a caregiver valuation of $60.6 billion—surpassing the economic impact of Walt Disney World Resort.
• California, categorized as “high-risk” on the scorecard, leads the nation with a state caregiving valuation of $122.3 billion, more than double the state’s $59 billion agriculture industry.
• Texas, categorized as “high-risk” on the scorecard, has a caregiver valuation of $62.4 billion—more than four times the size of the state’s $15.5 billion cattle industry. 

The epidemic of unpaid family caregiving is increasing: Dementia care is driving a significant portion of the national family caregiving valuation, contributing to more than $340 billion of labor, especially those in states with aging and high-risk populations.

• This new analysis found that even a 10% increase in dementia care hours would add another $62 billion in unpaid labor nationwide, highlighting that state legislators need to consider the growing demand for caregiving as dementia diagnoses rise.

Caregiving is especially challenging in states with more rural communities: In the 32 states with predominantly rural populations, unpaid family caregivers contribute more than $375 billion in labor, yet a shortage of health care workers makes it challenging for families to access necessary support.

• Georgia, categorized as “critical” on the scorecard, has one of the largest shortages of home health aides in the country, with only a fraction of the number of home health aides per 1,000 residents over 65 compared to the national average. 

A Call to Action

“Although caregivers don’t have a choice but to continue their vital work, it is essential that policymakers understand the difficult choices being made by families across their state and assist in supporting the valuable contributions of unpaid caregivers,” said Debra Barrett, vice president of corporate affairs at Otsuka. “Progress is being made, but achieving comprehensive change requires strong support and collaboration from both federal and state governments. At Otsuka, our support of this study reflects our broader commitment to advocating for family caregivers everywhere. As we look ahead, we must commit to long-term solutions that uplift and sustain family caregivers, recognizing their critical impact across the country.”

According to the Mailman School of Public Health and Otsuka, the report findings underscore the need to advocate for more support and resources for unpaid family caregivers, such as:  

• In an era of reduced government spending, it’s crucial to establish a consistent and reliable standard of support for unpaid family caregivers at the state level. States must advocate for funding to support programs that provide financial assistance, training and respite care for unpaid family caregivers to meet the growing demand and avoid putting more strain on their local health care systems.
• States with a higher rate of dementia care must urgently implement new solutions for unpaid family caregivers to bridge the workforce gap. To get ahead of the rising demand for managing complex, chronic conditions like dementia—traditionally managed by health care professionals—training and certification programs for family caregivers are essential.
• States with higher rural populations must implement targeted strategies to support the unpaid caregiving workforce. Where there is a shortage of health care workers, states can support family caregivers financially in recognition of their contribution to the health care system.
• Investing in the long-term care workforce at the federal level is crucial. This involves better training, higher wages and finding long-term solutions for staffing challenges for both institutional and community-based care.

To read the full report, including the methodology and heatmap, click here.

Advocating for Visibility & Support of Caregivers

On the heels of this latest research, Otsuka is the lead and founding sponsor of Caregiving, a two-hour documentary for PBS portraying paid and unpaid caregivers navigating the challenges and joys of this work. Intertwining intimate personal stories with the untold history of caregiving, the documentary reveals the state and the stakes of care in America today.

The project, created with executive producer Bradley Cooper, premieres June 24 on PBS and is available to stream on May 27 on PBS.org and the PBS App. It is the next feature film of the WETA award-winning Well Beings campaign, which addresses critical health needs in America. To learn more about Otsuka’s caregiver commitment visit otsuka-us.com/caregiver.