Family Caregivers on the Job

More than 27 million family caregivers in the United States provide care to seriously ill or disabled family members at home. Through the efforts of the United Hospital Fund and many other organizations, the issue of family caregiving is making its way onto the national agenda.

But for all the increased attention that the issue has 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. The project was sponsored by the United Hospital Fund, with grant support from The Robert Wood Johnson Foundation.


1. The ADL-IADL Measures from the Caregivers' Perspective
Carol Levine and Andrea Hart
2. The Work of Caregiving: What Do ADLs and IADLs Tell Us?
Susan C. Reinhard
3. Recognizing the Work of Family and Informal Caregivers: The Case for Caregiver Assessment
Lynn Friss Feinberg
4. Beyond ADL-IADL: Recognizing the Full Scope of Family Caregiving
Steven M. Albert
5. You Can't Get There from Here: Dimensions of Caregiving and Dementias of Policymaking
Bruce C. Vladeck
6. Measuring What Matters: Levers for Change
David A. Gould
7. Appendix: Family Caregivers on the Job: Moving beyond ADLs and IADLs

May 26, 2004
Focus Area
Quality and EfficiencyClinical-Community Partnerships
Family Caregiving