INFORMAL CAREGIVERS

Informal caregivers2 may be relatives, friends, or neighbors who provide assistance related to an underlying physical or mental disability but who are unpaid for those services. The motivation for providing this type of assistance is, most commonly, emotional commitment and personal relationship. Public policy has traditionally viewed informal caregivers’ service as a personal, moral obligation, and not as an extension of the workforce. Partly as a result, research has not provided a systematic accounting of their numbers, qualifications, and competence.

Families and friends of disabled older adults are the predominant providers of long-term care and in general are thought to provide task assistance that is of low cost, high quality, and consistent with older adults’ preferences. In addition to the home setting, many families provide support to older family members in assisted living facilities, nursing homes and low-income senior housing and are key components in helping to manage resident decline (Ball et al., 2004). The vast majority of care recipients report high levels of satisfaction with the assistance received from family and friends (Kasper et al., 2000; McCann and Evans, 2002), and family members have been characterized as being more responsive than paid helpers (Greene, 1983). However, for a number of older adults—such as those who were never married and have no children—informal caregivers are not available. Moreover, for a number of reasons, the overall availability of informal caregivers is decreasing, which has led to calls to increase the support that is provided to them.

While the average informal caregiver provides 20-25 hours of assistance per week (Johnson and Wiener, 2006; National Alliance for Caregiving and AARP, 2004), the intensity of help provided varies by disability level and population subgroup. Spouses, women, co-residents, and caregivers who support patients with dementia and end-of-life stages typically provide help with greater frequency and intensity (Bertrand et al., 2006; Donelan et al., 2002; Schulz et al., 2003b). Nearly 80 percent of adults who receive care at home rely exclusively on unpaid help from family and friends, while less than 10 percent received all of their care from paid workers (ILC-SCSHE Taskforce, 2007). In other words, informal caregivers provide at least some level of support for more than 90 percent of people receiving care at home.

The unpaid services provided by informal caregivers have a substantial economic value when compared against the payment rates that direct-care workers receive. In fact, the value of informal home care vastly exceeds the value of paid home care (AARP, 2007). Overall, the economic value

2

Informal caregivers are also, at times, referred to as family caregivers. For consistency, the term “informal caregivers” is used throughout this report.



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