New Book Explores Fresh Ways to Measure Tasks of Family Caregivers
More than 27 million family caregivers in the United States provide care to seriously ill or disabled family members at home, yet there is no accurate tool to measure or describe what family caregivers actually do, or to assess what educational and support services are necessary to assist them. These complex but vital issues are the focus of an important new book by the United Hospital Fund titled, Family Caregivers on the Job: Moving Beyond ADLs and IADLs.
The healthcare system continues to rely on Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs) — tools originally developed in the 1950s to measure care recipients' functional deficits — to assess caregivers' lives, determine eligibility for public and private benefits, and to design educational and support services for them. Family Caregivers on the Job: Moving Beyond ADLs and IADLs analyzes the limitations of ADLs and IADLs and explores more realistic alternatives.
Edited by Carol Levine, director of the United Hospital Fund's Families and Health Care Project and a caregiver herself, the book shows that recent changes in health care financing, medical care, and demographics have made ADLs and IADLs seriously inadequate as tools for today's policy makers, researchers, and other professionals.
“ADLs and IADLs are alien concepts to most caregivers, yet these tools developed in a less complicated era measure and define our lives,” Ms. Levine said. “ADLs and IADLs present an overly simplified and unrealistic description of the complex web of emotional, managerial, and cognitive tasks that confront care providers every day. Based on a year-long discussion among national experts, this book takes a fresh look at the issue and provides the groundwork for developing a coherent long-term care policy that will address the future needs of the nation's caregivers.”
- In chapter 1, "Doing Whatever Needs to Be Done," Ms. Levine and Andrea Hart demonstrate the limitations of ADLs and IADLs from the caregiver's perspective, noting that the measures fail to capture the range and difficulty of specific caregiving tasks. For instance, bathing -- a basic ADL -- becomes challenging and even dangerous when the care recipient is immobile or demented. Many “routine” activities, such as pain management, providing high-tech medical care at home, negotiating the health care system, managing paid home care aides, and providing emotional support are not covered by these measurement tools.
- "The Work of Caregiving: What Do ADLs and IADLs Tell Us," by Susan C. Reinhard, Center for Studies in Health Policy at Rutgers University, traces the development of the ADL-IADL measures from the their original purpose to their current all-purpose use in caregiver policy. She cautions that ADLs and IADLs fail to consider many aspects of caregiving and that the practical consequences are enormous. For example, eligibility for both private and public benefits for older adults is often based on ADLs. Most long-term care insurance policies use limitations in ADLs as a threshold, as do tax credit proposals. ADL limitations often also define nursing home eligibility under Medicaid.
- In "Recognizing the Work of Family and Informal Caregivers: The Case for Caregiver Assessment," Lynn Friss Feinberg, Family Caregiver Alliance, San Francisco, analyzes the important, but inconsistent and infrequent, use of caregiver assessment. Finding consensus on how to assess family care and developing a comprehensive caregiver assessment tool should be high priorities.
- Steven M. Albert, Sergievsky Center, Columbia University, "Beyond ADL-IADL: Recognizing the Full Scope of Family Caregiving," proposes a new framework for describing caregiving – one that takes into account not just what the care recipient needs but also the environment in which caregiving takes place, and the cooperation or lack thereof from the care recipient.
- In "You Can't Get There from Here: Dimensions of Caregiving and Dementias of Policymaking," Bruce C. Vladeck, Center for Medicare Studies, Mount Sinai Medical Center, poses some basic but important questions that must be answered to develop long-term policy and gauge the full dimensions of caregiver needs: Which caregivers should receive help? What kind of help should they receive? Should support for caregivers be universal or highly targeted or somewhere in between?
He also sets forth an aggressive agenda for caregiver needs assessment and recommends a number of important short-term policy changes, including:
- Paid providers of formal in-home services should be required to consult regularly with informal caregivers about the caregiver's resources and needs, as well as those of the patient.
- Medicare- and Medicaid-paid home care services, for which formal patient assessments are already required, should strengthen and expand the assessment of caregiver capabilities and needs.
- Caregiver assessments should be a mandatory part of the patient assessment process for Medicaid home- and community-based waivers.
- Medicare and JCAHO (Joint Commission for the Accreditation of Healthcare Organizations) standards for hospital discharge planning should be strengthened to require caregiver assessment, using a standard instrument, and the results incorporated into the discharge plan.
In the final chapter, David A. Gould, senior vice president for program at the United Hospital Fund, offers realizable next steps in "Measuring What Matters: Levers for Change." Reframing the way caregiving is defined and understood, he writes, will allow the health care system to move forward with the hard work of designing more responsive services, education programs, and public policies. He recommends practical and realizable steps, and outlines four areas that demand further exploration and experiments: research; professional education; public education; and public policy.
Family Caregivers on the Job is an essential tool for social workers, health professionals, discharge planners and health policy makers. The book provides a road map for developing realistic and practical assessment tools to accurately measure what family caregivers do. In turn, developing a more effective and practical support system will be a more achievable goal. The project was sponsored by the United Hospital Fund, with grant support from The Robert Wood Johnson Foundation.
Family Caregivers on the Job: Moving Beyond ADLs and IADLs is available for $20 per copy, plus $3.50 per order for shipping and handling, by calling toll-free (888) 291-4161 or by visiting the United Hospital Fund's website www.uhfnyc.org. For further information and for bulk discounts, please call the Fund's Communications Division at (212) 494 0734.
Note: Editors/book reviewers may request free review copies by calling (212) 494-0732 or (212) 575-4545.
ABOUT CAROL LEVINE: Carol Levine is the director of the United Hospital Fund's Families and Health Care Project. She also directs The Orphan Project: Families and Children in the HIV Epidemic, which she founded in 1991. She was director of the Citizens Commission on AIDS in New York City from 1987 to 1991. As senior staff associate of The Hastings Center, she edited The Hastings Center Report. In 1993 she was awarded a MacArthur Foundation Fellowship for her work in AIDS policy and ethics. She lives in New York City and serves as caregiver to her husband.
ABOUT THE UNITED HOSPITAL FUND: The United Hospital Fund is a health services research and philanthropic organization that addresses critical issues affecting hospitals and health care in New York City and the nation. The Fund's Families and Health Care Project aims to advance public and professional understanding of the crucial role of family caregivers in the health care system, and to stimulate the development of sound policies and programs that support their needs for education and training, emotional support, and information and communication.
Resources for family caregivers and health care providers are available at our Next Step in Care website.