New Report Underscores Urgent Need to Support Millions of Struggling Caregivers

The demand for family caregivers for adults who are 65 or older is increasing significantly, and family caregivers need more recognition, information and support to fulfill their responsibilities and maintain their own health, financial security and well-being, says a new report from the National Academies of Sciences, Engineering, and Medicine.

Although caregivers’ individual circumstances vary, family caregiving can negatively affect caregivers’ mental and physical health as well as cause economic harm, including loss of income and career opportunities. The report calls for health care delivery system reform that elevates family-centered care alongside person-centered care to better account for the roles of family caregivers and support their involvement in the care delivery process. 

The committee, which included Maria Aranda, associate professor at the USC Suzanne Dworak-Peck School of Social Work, found that by 2030, 72.8 million U.S. residents – more than 1 in 5 – will be 65 or older.  According to the National Survey of Caregivers, in 2011, 17.7 million people – or approximately 7.7 percent of the total U.S. population aged 20 and older – were caregivers of an older adult because of health problems or functional impairments. This estimate does not include caregivers of nursing home residents. Furthermore, for most family caregivers, caregiving is not a short-term obligation. The median number of years of family care for older adults with high needs is five years. The proportion of older adults who are most likely to need intensive support from family caregivers – those in their 80s and beyond – is projected to climb from 27 percent in 2012 to 37 percent in 2050. Little action has been taken to prepare the health care and social service systems for this demographic shift, the committee said.

While the need for caregiving is rapidly increasing, the number of potential family caregivers is shrinking. Current trends in family patterns – including lower fertility, higher rates of childlessness, and increases in divorced and never-married statuses – suggest a shrinking pool of potential caregivers in the near future. Unlike in the past, older adults will have fewer family members to rely on, more likely will be unmarried or divorced and living alone, and may be geographically more distant from their children.

The committee found that family caregivers typically provide health and medical care at home, navigate complicated and fragmented health care and long-term services and support systems, and serve as surrogate decision makers. Although family caregivers play an integral role in the care of older adults with disabilities and complex health needs, they are often marginalized or ignored in the delivery of health care and long-term services and supports. They also may be excluded from treatment decisions and care planning, while providers assume their availability to perform the wide range of tasks prescribed by the older adult’s care plan. For example, Medicare and other payers' financial incentives encourage shorter hospital stays with the implicit expectation that family members can support the older adult at home and manage the transition from hospital to home. In addition, providers expect family caregivers with little or no training to handle technical procedures and equipment – such as feeding and drainage tubes, catheters and tracheostomies – and to manage and monitor an elder’s condition. Family caregivers describe learning by trial and error and fearing that they will make a life-threatening mistake. Furthermore, family caregivers are typically provided little, if any, information and training to carry out the personal care and care coordination they are expected to deliver. 

“Ignoring family caregivers leaves them unprepared for the tasks they are expected to perform, carrying significant economic and personal burdens,” said Richard Schulz, committee chair and Distinguished Service Professor of Psychiatry at the University of Pittsburgh. “Caregivers are potentially at increased risk for adverse effects in virtually every aspect of their lives – from their health and quality of life to their relationships and economic security. If the needs of the caregivers are not addressed, we as a society are compromising the well-being of elders. Supporting family caregivers should be an integral part of the nation’s collective responsibility for caring for its older adult population.”

Family caregivers have higher rates of depressive symptoms, anxiety, stress and emotional difficulties, the committee found. Evidence also suggests that caregivers experience lower physical well-being, elevated levels of stress hormones, higher rates of chronic disease and impaired preventive health behaviors. Family caregivers of significantly impaired older adults are at the greatest risk of economic harm, in part because of the many hours of care and supervision devoted to these family members. Moreover, the longer family members are engaged in caregiving, the more likely they are to suffer negative consequences – such as anxiety, depression, social isolation and financial losses. However, the actual consequences for individual caregivers vary depending on a host of individual and contextual characteristics. Despite the array of negative consequences, caregivers also report positive outcomes. For some, caregiving instills confidence, provides lessons on dealing with difficult situations, brings them closer to the care recipient and assures them the care recipient is receiving good care.

In today’s world, family caregivers should not be expected to provide an array of complex care and support on their own, the committee said, and the emphasis on person-centered care needs to evolve into a focus on both person- and family-centered care. The report recommends that the next presidential administration take immediate steps to address the health, economic and social issues facing family caregivers of older Americans. The secretary of the U.S. Department of Health and Human Services, in collaboration with other federal agencies and private-sector organizations, should develop and execute a National Family Caregiver Strategy that recognizes the essential role of family caregivers to the well-being of older adults. 

This national strategy should include measures to adapt the nation’s systems for health care, workplaces, and long-term services and supports to engage family caregivers and support their health, values, and social and economic well-being, as well as address the needs of the increasingly culturally and ethnically diverse caregiver population. Specifically, the strategy should develop, test and implement effective mechanisms within Medicare, Medicaid and the U.S. Department of Veterans Affairs to ensure that family caregivers of older adults are routinely identified, assessed and supported.  It should also direct the Centers for Medicare & Medicaid Services to develop, test and implement provider payment reforms that motivate providers to engage family caregivers in delivery processes, across all modes of payment and models of care. In addition, the strategy should explore, evaluate and adopt federal policies that provide economic support for working caregivers. 

The committee also recognized that most state governments have yet to address the health, economic and social challenges of caregiving for older adults, and it recommended that state governments should learn from the experience of states with caregiver supports and implement similar programs. The public’s investment in family caregiving for older adults should be carefully considered, and public dollars should be shepherded responsibly, the committee noted. As federal and state agencies move to develop new programs and supports to address the needs of family caregivers, it will be important to prioritize the needs of the most vulnerable caregivers and tailor eligibility appropriately.

The study was sponsored by the Alliance for Aging Research, Alzheimer’s Association, an anonymous donor, Archstone Foundation, California HealthCare Foundation, The Commonwealth Fund, U.S. Department of Veterans Affairs, The Fan Fox and Leslie R. Samuels Foundation, Health Foundation for Western and Central New York, The John A. Hartford Foundation, May and Stanley Smith Charitable Trust, The Retirement Research Foundation, The Rosalinde and Arthur Gilbert Foundation, Santa Barbara Foundation, and Tufts Health Plan Foundation. The National Academies of Sciences, Engineering, and Medicine are private, nonprofit institutions that provide independent, objective analysis and advice to the nation to solve complex problems and inform public policy decisions related to science, technology and medicine. The Academies operate under an 1863 congressional charter to the National Academy of Sciences signed by President Lincoln. For more information, visit http://national-academies.org

Copies of "Families Caring for an Aging America" are available from the National Academies Press on the Internet at http://www.nap.edu or by calling 202-334-3313 or 1-800-624-6242.