Who Provides Care

Families have always been and continue to be the primary source of help to disabled elders. It is estimated nationally that family and friends are the sole source of assistance for nearly three-quarters of impaired older adults in the community (Doty, 1986). They are also the preferred source of help for most elders (Shanas et al., 1968; Comptroller General of the U.S., 1977; Eggert et al., 1977; U.S. DHEW, 1978; Cantor and Johnson, 1978; Community Council of N.Y., 1978; Branch and Jette, 1983; McAuley and Arling, 1984; McKinlay and Tennstedt, 1986; Stone et al., 1987).

In 1996, the National Alliance for Caregiving and AARP conducted a nationwide telephone survey to identify and profile the experiences of caregiving (National Alliance for Caregiving and American Association for Retired Persons, 1997). This survey provides the most recent national data on a random sample of households in the U.S. The sampling strategies ensured the inclusion of minorities and enabled the identification of caregivers for persons age 50 and over with a variety of disabling conditions. This data set provides our most current prevalence estimates of caregiving – the experiences and impacts. Based on results of this survey, nearly one in four U.S. households with a telephone contained at least one caregiver (defined as currently or previously providing care within the last 12 months to a relative or friend at least 50 years old). This translates into 22.4 million caregiving households nationwide during the 12-month period of study.

The findings of the NAC/AARP study are overwhelmingly consistent with data from earlier studies. The majority of caregivers are women. The NAC/AARP study reports that 72.5% of the national sample of caregivers were female. Any small differences in gender in other studies is likely related to the age inclusion criterion for the care recipient. Average age of caregivers is similarly influenced by the age of care recipients – the older the care recipient, the older the caregiver.

Consistently across all studies of caregiving and as has been reported in the NAC/AARP study, spouses are the first source of caregiving assistance. Likely related to the nature of the marital relationship, spouses are often the sole caregiver (Stone, Cafferata and Sangl, 1987; Tennstedt, McKinlay and Sullivan, 1989) and provide the most extensive and comprehensive care (Cantor, 1983; Horowitz, 1985; Johnson, 1983; McKinlay and Tennstedt, 1986; Shanas 1979; Soldo and Myllyuoma, 1983; Stephens and Christianson, 1986; Stone, Cafferata and Sangl, 1987). This holds true for caregivers of elders with dementia or with functional disabilities only. Offspring are usually the next source of informal care, also for both groups, with daughters more likely than sons to be in this role. Friends and neighbors are mobilized in the absence of family caregivers, or as supplemental sources of assistance (Cantor and Johnson, 1978; Sherwood et al., 1981; Shuval et al., 1982; Stoller and Earl, 1983; McKinlay and Tennstedt, 1986). However, caregiving for elders with dementia is less frequent among extended kin or non-kin, likely because of the greater commitment and involvement required.

An important point about gender and relationship of caregivers. While females predominate in the role, our longitudinal study in Massachusetts has reported that spousal caregivers are just as likely to be male as female (Tennstedt et al., 1993a). Further, these men were more likely to be the sole caregiver, with no assistance from others (Tennstedt et al., 1989). That is, male spousal caregivers are similar to female spousal caregivers.

Data have shown that generally caregiving is not a shared activity. Consistent with several other studies (Horowitz, 1978; Frankfather, Smith and Caro, 1981; Horowitz and Dobrof, 1982; Johnson, 1983; Stoller and Earl, 1983; National Alliance for Caregiving and American Association for Retired Persons, 1997), we found that one person tends to provide the majority of informal care. Secondary caregivers are often few in number and provide much less care, and then on an intermittent basis. Further, our data indicate that women – usually daughters – caregivers are more likely than men to receive assistance from others in caring for the older person and that these secondary caregivers are often the caregiver’s spouse and children (Tennstedt et al., 1989). This focusing of caregiving responsibilities on a nuclear family unit has obvious implications for potential negative impact, which may, in turn, contribute to increased risk of institutionalization of the elder.

Caregivers typically live in close proximity to the care recipient. The NAC/AARP survey (1997) reports that 20% share a household and another 55% live less than 20 minutes from the care recipient. This proximity clearly facilitates the provision of care. A decision to coreside is often related to the elder’s need for care. However, residential proximity likely also influences who in an extended family assumes the primary caregiving role. If there is a choice, the adult child who lives close by and has few competing responsibilities (not employed, not married, few or no children) is the likely candidate.

In the last 10 years, there has been increasing attention to differences in caregiving across ethnic groups. The early comparative studies focused primarily on comparisons of African-Americans and Whites. More recently, researchers have studied Hispanic and Asian subgroups as well. The NAC/AARP survey (1997) included Whites, Blacks, Hispanics, and Asians. They reported higher incidence of caregiving among Asian-American (31.7%), African-American (29.4%) and Hispanic (26.8%) households than in the general population. The larger and modified extended families of African-Americans and Hispanics are thought to increase the informal care resources of older persons in these two groups (Chatters et al., 1985, 1986; Montgomery and Hirshorn, 1990; Delgado and Humm, 1982). In fact, caregivers in these three minority groups are more likely than in the general population to provide care for more than one person. They were also more likely than White caregivers to live with the care recipient and to have help from other persons (National Alliance for Caregiving, 1998).