(Spillman and Pezzin, 2000). Another study found that in 1999 just 28 percent of primary caregivers received assistance from other family members and friends, a decline from 39 percent in 1989 (Wolff and Kasper, 2006). A number of studies found that during the decade ending in 1994, chronically disabled older adults increasingly relied on paid care (Liu et al., 2000). In many cases, however, primary caregivers simply “go it alone.” In 1999, 53 percent of primary caregivers were the exclusive source of assistance, compared to just 35 percent of primary caregivers in 1989 (Wolff and Kasper, 2006). Primary caregivers with no secondary caregiver involvement were most likely to be caring for the least impaired recipients and least likely to be caring for the most disabled.
Informal caregivers assume many different responsibilities in providing care support for older adults (Table 6-2). In performing these functions, they in effect take on the roles of both patient and provider. On the one hand, they take responsibility for much of the patient’s role with respect to logistics, care management, and medical decision-making. For example, they often schedule medical appointments for older adults, provide transportation, and handle billing questions. They assume greater responsibility in presenting the patient’s history and listening to the clinicians’ assessments and instructions. They frequently make, or influence, decisions regarding the appropriate course of treatment. They also take on a health status monitoring function, as envisioned under the self-management paradigm described previously. On the other hand, caregivers also take on the role of health care provider, performing many of the functions that direct-care workers perform on a paid basis, including support with ADLs and IADLs. The sections below detail several of these roles.
Informal caregivers provide older adults with help in performing ADLs—typically bathing, dressing, eating, toileting, and transferring—and IADLs, such as shopping, meal preparation, money management, light housework, and laundry. Data from the NLTCS and its Informal Caregivers Survey indicate that caregivers commonly assist with the full range of these tasks. In one study, large percentages of primary caregivers reported helping chronically disabled older adults with shopping and/or transportation (85.3 percent), household tasks (77.7 percent), finances (49.4 percent), personal care and nursing (48.5 percent), and indoor mobility (35.1 percent) (Wolff and Kasper, 2006). A substantial portion of informal caregivers (43-53 per-