Families Caring for an Aging America

This introductory chapter describes the background for the study, the scope of the inquiry, and the committee’s methods and vision for the future. It also reviews current federal programs that provide direct support to family caregivers. The committee’s charge was to develop recommendations to support the nation’s family caregivers so that they can effectively advocate and care for older adults without harm to themselves. The report examines what is known about the characteristics of caregivers and the older adults they care for, the evolving role of caregivers and the impact of caregiving on their health and well-being, the economic impact of caregiving especially on those caregivers who are employed, the evidence on the effectiveness of existing caregiver programs and interventions, and the challenges that caregivers face in health care and long-term care systems. Millions of Americans are providing care and support to an older parent, spouse, friend, or neighbor who needs help because of a limitation in their physical, mental, or cognitive functioning. For decades, demographers, gerontologists, health researchers and providers, economists, and other experts have raised concerns about the rapid aging of our population and its implications for the health care system, Social Security, and local, state, and federal resources (Brody, 1966; IOM, 1991, 2008, 2012; MedPAC, 2015; NRC, 1988, 1994, 2003, 2012). Billions of public dollars are being invested in much needed research and development to find ways to improve the value and quality of the U.S. health care system (CMS, 2016a, b). Far less attention has been given to family caregivers who provide the lion’s share of long-term services and supports (LTSS) to our older adult population. Many are unaware that, today, family caregivers are also expected to provide complex health care services once only delivered by licensed health care personnel in a hospital or other institutional setting. In 2014, 13 private foundations, the U.S. Department of Veterans Affairs (VA), and an anonymous donor came together to ask the National Academies of Sciences, Engineering, and Medicine to develop a report with recommendations for family caregiving of older adults (see Box 1-1). The committee’s charge is presented in Box 1-2. This study has three principal objectives: (1) to assess the prevalence and nature of family caregiving of older adults as well as the impact of caregiving on caregivers’ health, employment, and overall well-being; (2) to examine available evidence on the effectiveness of programs, supports, and other services designed to support family caregivers; and (3) to assess and recommend policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults. 1 Long-term services and supports (LTSS), sometimes referred to as long-term care, include the array of paid and unpaid personal care, health care and social services generally provided over a sustained period of time. Services can include personal care (such as bathing or dressing), help with medication management, paying bills, transportation, meal preparation, and health maintenance tasks. Services can be provided in a variety of settings such as nursing homes, residential care facilities, and individual homes.