Family Caregivers on the Job: Moving Beyond ADLs and IADLs

by Carol Levine (Editor)

More than 27 million family caregivers in the United States provide care to seriously ill or disabled family members at home. But for all the increased attention that family caregivers have received in recent years, we still have no good way of fully describing or accurately measuring what family caregivers actually do, what it is that makes their work rewarding or challenging, and what help they might need to continue. Absent this knowledge, we cannot begin to design the educational and support services that might spell the difference between satisfaction and burnout, fulfillment and despair. Instead, we continue to rely on Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs)— tools developed to measure care recipients' functional deficits—to assess the realities of the lives of their family care providers. This volume captures a year's worth of fruitful debate among experts convened from around the country to analyze the limitations of ADLs and IADLs and to explore alternatives.

192 pages, Paperback

First published January 1, 2004

About the author

Carol Levine has taken the “road less traveled” on her career path. As an undergraduate at Cornell University, she studied Russian history, literature (with Vladimir Nabokov), and language. She continued her studies at Columbia University as a Ford Foundation Fellow and received an MA in public law and government. The link to her current position as director of the United Hospital Fund’s Families and Health Care Project is not immediately apparent, but each step along the way honed her skills as a researcher, analyst, and writer.

She was introduced to the world of medical ethics through her 12-year tenure at The Hastings Center, where she edited the Hastings Center Report and is now a Hastings Center Fellow. Much of her work in the 1980s and early 1990s concerned HIV/AIDS and ethics, and in 1993 she was awarded a MacArthur Foundation Fellowship for that work.
She joined the United Hospital Fund in 1996 to work on issues related to family caregiving, a professional interest that grew out of her personal experience as a caregiver to her late husband who was disabled as the result of an automobile accident. That work has been recognized by her designation as a WebMD Health Hero in 2007 and a Civic Ventures Purpose Prize Fellow in 2009. She serves on many advisory boards related to aging, family caregiving, and long-term care. She contributes to the United Hospital Fund's Facebook page Family Caregivers and Better Health Care.

In addition to publishing many professional and consumer articles, she edited Always On Call: When Illness Turns Families into Caregivers (2nd ed., Vanderbilt University Press, 2004), and with Thomas H. Murray, co-edited The Cultures of Caregiving: Conflict and Common Ground among Families, Health Professionals and Policy Maker (Johns Hopkins University Press, 2004).

While working on Planning for Long-Term Care for Dummies (Wiley, 2014), she was also compiling an anthology, Living in the Land of Limbo: Fiction and Poetry about Family Caregiving (Vanderbilt University Press, 2014). This brings her abiding interest in literature full circle.

Carol lives in New York City, surrounded by books and needlepoint and, as often as possible, by children and grandchildren.