The nature and extent of social relationships can have a significant influence on health and well-being (Cohen and Syme, 1985; House et al., 1988). Supportive relationships contribute to improved health outcomes, and inadequate social support has been identified as a major risk factor for premature mortality (Berkman and Syme, 1979; House et al., 1982). Social relationships provide both instrumental and emotional support. For community-resident older women with functional limitations and disability, the presence and availability of assistance from both informal and formal care providers have important implications for their continued maintenance in the community. Adequacy of emotional support is also meaningful as it can affect life quality and influence mental health (Berkman and Syme, 1979; Cohen and Syme, 1985).
The Women's Health and Aging Study (WHAS) obtained information on various aspects of social relationships. This chapter focuses on instrumental and emotional support according to age group and disability level. Instrumental support encompasses the presence and source of assistance with a variety of tasks: basic self-care activities of daily living (ADLs) including bathing, dressing, getting in and out of bed or chairs, eating, and using the toilet; and instrumental activities of daily living (IADLs) such as meal preparation, housework, shopping, using the telephone, taking medications, and managing money. Emotional support comprises the presence of a confidant and the confidant's relationship to the participant, as well as perceived adequacy of emotional support.
Table 7.1 describes the number and characteristics of persons who provided help with ADLs and/or IADLs. About 15 percent of older disabled women reported receiving no assistance from others in either self-care or other routine activities. Forty percent identified one helper, and the remaining 46 percent named two or more. The likelihood of receiving help and the number of helpers varied by age. Women age 85 years and older had the highest percentage of multiple helpers. More than 60 percent of women in this age group had two or more helpers, and 10 percent reported four or more. Women receiving help with at least one ADL were more likely to have multiple helpers than less severely disabled women. Close to one-quarter had three helpers, and another 17 percent had four or more. Sizable percentages of women with moderate disability (80 percent) and those with ADL difficulty who did not receive ADL help (85 percent) received assistance with tasks other than ADLs that are important for community living. Of these women, those with ADL difficulty were more likely to have multiple helpers than the moderately disabled.
Typically, family and friends are the primary providers of assistance with ADLs and other routine activities of daily living (Cantor, 1980; Doty, 1986; Jette et al., 1992; Stone et al., 1987). In this population of functionally limited to severely disabled older women, 22 percent reported receiving help from their spouse, close to 40 percent from a daughter or daughter-in-law, and 22 percent from a son or son-in-law. A substantial percentage (29 percent) also reported receiving assistance from some other relative, including siblings. In contrast to younger women, those age 85 years and older were much less likely to receive assistance from a spouse (less than 5 percent), although mention of help from relatives other than a spouse remained fairly consistent across age groups. Daughters and daughters-in-law played relatively prominent roles in providing help. Their role increased in importance with increasing severity of participant disability: 36 percent of the moderately disabled reported help from daughters and/or daughters-in-law compared with almost 50 percent of those receiving ADL help.
Paid helpers were used by nearly 40 percent of these women, although they were rarely the sole source of assistance. The percentage of women receiving help from paid providers only was 15 percent. The proportion using paid assistance rose with increasing age, with 25 percent of the youngest women having any paid helpers and 57 percent of the oldest women using paid help solely or in addition to unpaid assistance. The proportion using paid help also increased with increasing severity of disability. About one-third of moderately disabled women had paid assistance, whereas over half of women receiving ADL help had at least one paid helper. Sole use of paid help, however, was lower among the oldest women than those age 75 to 84 years, and among the most severely disabled women in contrast to the less disabled women. This suggests that paid help is used to supplement unpaid assistance in the more disabled subgroups.
While older disabled women often reside with their care providers, many do not, even among those who require assistance with ADLs. Overall about 30 percent of the women received all their help from persons who lived with them. The percentage was highest for women age 65 to 74 years, many of whom had only one or two helpers, often a spouse or another member of the immediate family. The oldest women were least likely to live with any of their helpers (64 percent), which is consistent with the high percentage of women in this age group who lived alone (see Chapter 5, Table 5.1). This residence status may also contribute to their considerable use of paid help. In contrast, a substantial majority of women who received help with ADLs lived with at least one of their helpers (68 percent), yet nearly one-third lived independent from any helper. Over one-third of the most severely disabled had some helpers who lived with them and some who did not; this is consistent with their reliance on a combination of paid and unpaid help. Women with ADL difficulty who reported receiving help were asked to identify a primary caregiver. When more than one person helped with ADLs, the recipient was asked who they "relied on the most for help." Table 7.2 presents the characteristics of these caregivers. About 22 percent of these women named their spouse as their primary helper. Since 29 percent of women receiving ADL help were married (see Chapter 2, Table 2.1), it appears that most married women in the most disabled group relied on their spouse as their primary caregiver.
Over one-quarter of women receiving ADL help named a daughter or daughter-in-law as their primary helper. The major role of daughters and daughters-in-law in providing assistance with long-term care needs of older people has been documented previously (Stone et al., 1987). Reliance on daughters and/or daughters-in-law increased with the age of the participant, from 27 percent in women age 65 to 74 years to 37 percent of the oldest old, mirroring the decrease in reliance on a spouse. Twenty-two percent of the most disabled women named a nurse or nurse's aide as their primary caregiver; this proportion rose with increasing participant age, from 17 percent among those age 65 to 74 years to 32 percent among those age 85 years and older. The percentage of primary helpers who were paid was somewhat higher, especially for the oldest women (44 percent). These additional paid helpers could be drawn from both relatives and non-relatives. Given the downward trend in reliance on spouses with increasing participant age, and the increasing importance of daughters and daughters-in-law, nurses, and nurse's aides, it is not surprising that women predominated as primary caregivers. Women accounted for about two-thirds of the primary caregivers, with the oldest participants most likely to mention a woman in this role (86 percent).
Table 7.2 also presents the residential status of the primary caregiver and the activities for which he or she provided help. Among women who received ADL help, those age 65 to 74 years were more likely to live with their primary helper than were the oldest participants, 63 and 40 percent, respectively. This is primarily a function of marital status and reflects the much higher proportion of spouses among primary caregivers for women age 65 to 74 years. Among women age 85 years and older, spouses represented only 1 percent of primary helpers, while nearly 44 percent were paid helpers. Overall, about 80 percent of primary helpers assisted with one or two ADLs, and the remaining 18 percent assisted with three to five ADLs. This distribution varied somewhat by age, with 15 percent of helpers assisting with three to five ADLs for women age 65 to 74 years and 25 percent for women age 85 years and older. Eighty-seven percent of the primary ADL care providers also assisted with at least one IADL.
Providing assistance to persons with functional limitations can encompass a broad range of activities. Table 7.3 gives the percentage who received personal assistance for each of five ADLs and seven IADLs. For each task, participants were asked if they received any help whether or not they reported difficulty with the task (see Chapter 4). Among the ADLs, help was most often provided with bathing, followed by dressing. This same hierarchy has been observed in representative national samples of older persons (Prohaska et al., 1993). For the IADLs, over 70 percent of women received help with heavy housework, more than half with shopping for personal items, more than one-third with both light housework and money management, and more than one-fifth with meal preparation. The percentage of women receiving assistance across tasks increased with age and severity of disability for nearly all tasks. Variation by age in the percentage who received assistance was less dramatic for the ADLs, particularly getting in and out of bed or chairs, eating, and using the toilet, all of which had low overall prevalence of help received. Substantial percentages of women age 85 years and older and even higher percentages of those receiving ADL help received assistance across all tasks.
Emotional support, typically operationalized as the presence of one or more persons with whom thoughts and feelings can be shared, has been identified as an important determinant of general health and well-being (Cohen and Syme, 1985). Table 7.4 presents data on the presence and type of confidant. Over 90 percent of these disabled older women reported having a person with whom they could share feelings or on whom they could depend. A child, other relatives, friends, or neighbors were most frequently mentioned. Although 24 percent of these women were married (see Chapter 2, Table 2.1), only 5 percent identified a spouse as their confidant. This may indicate that most of the married women interpreted this question to mean someone other than a spouse or, as at least one other study has found, spouses were not the first choice of confidant among older women (Connidis and Davies, 1992). Although most women indicated they had someone to confide in, almost one-third reported they could have used more emotional support in the previous year. This percentage was higher (36 percent) among those age 65 to 74 years than among those age 85 years and older (25 percent). Over 45 percent of the most severely disabled women reported they could have used more emotional support, compared with less than 30 percent of less severely disabled women. Women who felt they needed more emotional support were about equally divided in terms of whether they needed a lot, some, or a little more support, except for those age 85 years and older, who rarely reported that they needed a lot more support.
Support from family and friends and assistance in daily activities are vitally important influences on the lives of older disabled women in areas ranging from functional status to life satisfaction. In this chapter, the nature of caregivers and the tasks for which they provided help, including both instrumental and emotional support, were examined. Characteristics of people providing assistance in basic daily tasks varied with the age of the WHAS participant: the younger women were more likely to rely on spouses than the older women, who were more likely to rely on their daughters and/or daughters-in-law. Older and more profoundly disabled women tended to have a larger network of helpers which often included paid providers. Additional information on caregiving relationships is being collected in a separate study of caregivers to the WHAS population under a grant supported by The Commonwealth Fund.
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