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Valuing the Invaluable 2019 Update: Charting a Path Forward

by Susan Reinhard, Lynn Friss Feinberg, Ari Houser, Rita Choula, Molly Evans, Public Policy Institute, November 14, 2019

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With the complexity of care increasing and other factors putting ever-more pressure on family caregivers, the demands of family caregiving are becoming unsustainable for people to manage alone. As a result, ensuring better recognition of and support for family caregivers has become a health, economic, and social imperative.

Part of the Valuing the Invaluable series on the economic value of family caregiving, this report updates national and individual state estimates of the economic value of family caregiving using the most current data available. It found that in 2017, about 41 million family caregivers in the U.S. provided an estimated 34 billion hours of care to an adult with limitations in daily activities. The estimated economic value of their unpaid contributions was approximately $470 billion.  

Additional key findings from this report include:

Today’s Family Caregivers  

  • Today’s family caregivers have an array of responsibilities, including advocating for their relatives’ preferences and interests, dealing with health insurance claims, communicating and coordinating care with various health care and social service providers and care settings, and providing transportation to medical appointments. They also hire and supervise direct care workers when the individual or family can afford some paid help.
  • In addition to helping with self-care and other everyday activities and providing emotional and social support, family caregivers perform complex medical and nursing tasks (such as performing wound care, giving injections, and handling medical equipment) in the home. 
  • Most family caregivers receive little instruction or support in taking on complex medical and nursing tasks historically provided by trained home health care professionals in hospitals and nursing homes. 
  • While family caregivers often experience positive effects and feelings of satisfaction and meaning, they nevertheless typically feel highly strained and overwhelmed and are at increased risk for chronic loneliness. 

Trends in Family Caregiving

  • Today’s family caregivers come from every age, racial, and socioeconomic group, and include both men and women. 
  • Family caregivers are increasing in diversity. Nearly one in four (24 percent) is a millennial, 40 percent are men, and about 40 percent represent multicultural communities. 
  • Family caregivers are increasingly involved in performing a range of complex care tasks, such as providing pain management, changing dressings, and managing medications—tasks that go beyond helping with traditional activities of daily living (like bathing or dressing) and independent activities of daily living (such as paying bills or doing housework). 
  • Most family caregivers (60 percent) are juggling paid work and caregiving, and trends suggest that with the aging of the baby boomers, an increasing share of family caregivers will be in the labor force in the future.  
  • Without workplace benefits to support family caregivers, employed family caregivers can experience heightened financial and emotional strain. 
  • Family caregivers who disrupt their careers or leave the labor force entirely to meet caregiving demands can face substantial economic risk and both short- and long-term financial difficulties.
  • Most family caregivers incur steep out-of-pocket costs related to caregiving, spending $7,000 on average in 2016. 
  • Rising demand and shrinking families will increasingly strain family caregivers and those they care for. In 2010, there were 7.1 potential family caregivers for every person age 80+. By 2030, there may be only 4.1 potential caregivers for every person 80+.

Policy and Practice: Change is Accelerating
Significant federal and state policy developments and meaningful steps, both in the public and private sectors, have taken place since the release of the 2015 Valuing the Invaluable report. 

Federal Highlights: 

  • With the enactment of the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, a national family caregiver support strategy across the lifespan is on the horizon. 
  • The Medicare and Medicaid programs continue to better identify and support family caregivers in health care and LTSS. 
  • Policy and training initiatives continue to evolve toward adopting person- and family-centered care, as well as toward strengthening the ability of health care and social service providers to recognize and engage family caregivers.

State Highlights: 

  • The Caregiver Advise, Record, Enable (CARE) Act has been enacted in 43 states and territories. 
  • There’s growing momentum and support for paid family leave in the workplace.
  • Some states are beginning to provide financial relief for family caregivers. 

More Action Is Needed to Help Caregiving Families

  • While significant federal and state policy changes since 2015 have strengthened support of family caregivers, more crucial work remains. 
  • The aging of the population and its impact on families can no longer be viewed as a private, family-only issue.
  • America’s public policies have not kept pace with changing demographic and social trends.
  • Investments in family caregiving supports now will build a more caring society for our families and ourselves tomorrow.

Suggested citation: 

Reinhard, Susan C. Lynn Friss Feinberg, Ari Houser, Rita Choula, and Molly Evans. Valuing the Invaluable: 2019 Update – Charting a Path Forward. Washington, DC: AARP Public Policy Institute. November 2019. https://doi.org/10.26419/ppi.00082.001

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