Why Do Some Caregivers of Disabled and Frail Elderly Quit?
Boaz, Rachel F., Muller, Charlotte F., Health Care Financing Review
The rapid growth in the number of very old Americans has increased the number of elderly depending on others for the basic daily activities of personal care and household tasks. While living in the community, their main source of help is the informal care provided by relatives and friends, mostly immediate family members. According to Liu, Manton, and Liu (1985), in 1982, 73.9 percent relied solely on unpaid help, 20.6 percent had both paid and unpaid help, and 5.5 percent used paid help only. Stone, Cafferata, and Sangl (1987) show that, of all unpaid caregivers helping the most dependent elderly, 36 percent were spouses and 37 percent were daughters and sons.
By now it is well established that caregiving in the United States is stressful (Zarit, 1989). For example, according to Cantor (1983), whose findings are based on 111 caregivers in New York City, caregiving has a substantial effect on a caregiver's life, epecially on job performance and on the time available for spending with other close relatives and friends or devoting to other leisure activities. Moreover, the closer the bond between caregiver and recipient, the greater the emotional strain for caregivers. Caring for frail and disabled elderly is stressful even in an optimal environment such as that offered in an Israeli kibbutz. The social structure of a kibbutz provides support for both caregiver and recipient and allows each to make choices about the mix of formal and informal care without being subject to exclusionary screening procedures and restrictions on eligibility for formal services, as is the norm in the United States. Next of kin can choose not to be caregivers because formal care is available on demand, and those who choose to be caregivers can receive work credit and other relief. Yet, as Holmes et al. (1989) show, based on a sample of 113 informal and 156 formal helpers in 53 kibbutzim, when informal caregivers feel overburdened, institutionalization is likely. Using the same data, Teresi et al. (1989) show that caregivers' burden and low morale, due mainly to the recipient's mental status and incontinence, increase the risk of institutionalization notwithstanding the availability of paid help in the community.
Some caregivers quit although their care recipients continue to need help, as demonstrated by data from two linked national surveys undertaken by the Department of Health and Human Services in 1982. The National Long-Term Care Survey (NLTCS) is based on a probability sample of the disabled and frail elderly living in the community (Office of the Assistant Secretary for Planning and Evaluation, 1986). Its companion survey, the National Informal Caregiver Survey (NICS), is based on a probability sample of the caregivers who helped these elderly with the basic daily activities of personal care. The average interval between the interviews conducted for both surveys was 3 months. Out of the 1,924 caregivers selected for the NICS sample, 298 who were caregivers at the time of the NLTCS survey had become former caregivers at the time of the NICS survey. Of these, 145 had cared for 85 recipients who died during the interval and 27 had cared for 18 recipients who were reported not to need any more help. These represented approximately 97,000 disabled persons who died and 21,000 who recovered over a 3-month period. The remaining 126 former caregivers had 80 care recipients still needing help; they represented 95,000 disabled persons. The 1,620 current caregivers were helping 1,242 care recipients who represented 1,404,000 disabled persons.
Our study focuses on caregivers' attrition rather than on their stress (the focus of other studies), and it is designed to understand the difference between current and former caregivers. Based on a nationally representative sample, caregivers who dropped out over a 3-month period in 1982 constituted 7.2 percent (126/1,746) of all caregivers whose recipients needed help with basic daily activities of personal care. …