Long-term care: Support for
family caregivers
GEORGETOWN UNIVERSITY
Long-Term Care Financing Project
ltc.georgetown.edu issue brief
March 2004
Lee Thompson is a Senior Research Associate at the Health Policy Institute, Georgetown University.
Family members are the predominant providers of long-term care—that is, personal assistance with essential, everyday activities—for people with disabilities. Family and other informal caregivers per-
form a range of tasks and invest varied amounts of time. But many care-
givers assist people with severe disabilities for a major portion of time
each week, often over a period of years. Although caregivers and care
recipients value their relationships, caregiving often comes at significant
cost—in health, resources, and opportunities foregone. By reducing
this cost—through assistance and financial support—public policy can
strengthen the ability of family caregivers to provide care.
The role of family caregivers
Long-term care consists of the assistance and services provided to
people who, because of disabling illnesses or conditions, are limited in
their ability to perform basic activities such as bathing and preparing
meals. These activities are often referred to as activities of daily living
(ADLs)—fundamental routine tasks such as bathing, dressing, getting in
and out of bed or chairs, using the toilet, and eating—and instrumental
activities of daily living (IADLs)—additional activities necessary for inde-
pendence such as shopping
for groceries and necessities,
preparing meals, manag-
ing medications, getting to
places outside of walking
distance, and doing light
housework.
Over three-quarters—78
percent—of adults receiv-
ing long-term care at home
rely exclusively on assis-
tance from family members,
friends, and volunteers,
referred to as informal care
(see Figure 1). The other 22
percent receive assistance
Lee Thompson
Figure 1

Issue brief, Long-term care: Support for family caregivers, March 2004
Georgetown University Long-Term Care Financing Project 2
from paid providers such as personal assistants and home care aides; 14
percent use this formal care in conjunction with informal care and 8 per-
cent depend on formal care alone. Even among adults in the community
with substantial disabilities—limitations in three or more ADLs—two-
thirds rely exclusively on informal care.1 Family caregivers also provide
hands-on assistance, such as help with bathing and eating, to persons
in nursing homes and other residential settings.2 In addition, caregivers
may also help their family member or friend learn about his or her medi-
cal and long-term care needs and arrange for appropriate services.
Who are the family caregivers?
Based on an analysis of the U.S. Census Bureau’s Survey of Income
and Program Participation (SIPP) by Alecxih and colleagues, about 9.4
million individuals were providing assistance to a relative or friend with
a disability or chronic health problem in 1998.3 The majority of informal
caregivers are relatives of those with care needs (see Figure 2). Spouses
and children represent similar proportions, and together account for
almost one-third of caregivers. One-quarter of caregivers are parents,
and about one-fifth are other relatives, including children-in-law. About
8 percent of caregivers reported that they are not related to the care re-
cipient, and another 15 percent did not specify their relationship to the
recipient.
Figure 2