Types and Amounts of Informal Care

Studies have shown that informal caregivers provide a wide variety of assistance, with emotional support often cited as the most common activity (Horowitz and Dobrof, 1982; Shuval et al., 1982; McKinlay and Tennstedt, 1986; Stone et al., 1987). As displayed in Table 1, caregivers in the NAC/AARP study provided help with many instrumental tasks. Data in Table 2, however, indicate that help with personal care is less frequent. Although sometimes mentioned, generally financial contributions are not an important type of assistance, although out-of-pocket expenses may be incurred in providing care. It appears that families are more inclined to provide services directly than to purchase them for the elder (Horowitz and Dobrof, 1982; McKinlay and Tennstedt, 1986). However, recent data from the NAC/AARP survey (1997) show that caregivers in higher income categories are more likely than those with less income to purchase in-home services.

The type of care provided by a specific caregiver appears related to gender-expected activity. Female caregivers typically provide personal care, housekeeping tasks, and meals, while male caregivers provide assistance with home repairs, transportation, and financial management (Treas, 1977; Horowitz and Dobrof, 1982; Stoller and Earl, 1983).

However, one cannot assume that because women are more likely to provide care, that they also provide larger amounts of care. Only a few studies have explored whether the actual amount of care varies by the caregiver’s gender, and the results of these studies are less consistent (Stoller and Earl, 1983; McKinlay and Tennstedt, 1986; Stone et al., 1987). In our sample (Tennstedt et al., 1993a), we found that male and female spousal caregivers provided similar amounts of care. However, all other female caregivers were found to provide considerably more help than male caregivers. Similar results were found in the National Long Term Care Survey (Stone et al, 1987) and in the National Alliance on Caregiving/AARP Study (1997). However, while observing these gender differences, it should be noted that both groups provide substantial amounts of care. According to the nationwide NAC/AARP Survey (1997), on average caregivers spend 18 hours per week on caregiving, with almost one-fifth (18.6%) of caregivers providing constant care for 40 or more hours per week. The difference in hours may well be a function of the time and frequency of contact required to provide different types of care (e.g., meals vs. home repairs). This underscores the importance of considering both type and amount of care when examining differential impact of helping activities on the caregiver.

Differences in amounts and types of care are directly influenced by the type and extent of the care recipient’s impairment. The care recipient’s profile of need for care can be based on duration (acute vs. chronic) or type of impairment (physical vs. cognitive vs. combined). Most acute situations involve physical conditions and require care provision at potentially high levels for time-limited periods. Sometimes these situations do not even get defined as caregiving by those providing assistance because of the short duration. They are considered similar to care of any illness or injury of a family member of any age. The situations defined as caregiving usually involve chronic conditions necessitating long-term care, including both physical and cognitive impairments. A distinction between dementia care and non-dementia care has been made by researchers recently to study differences in the caregiving experiences. According to NAC/AARP (1997) data, 22% of caregivers report that their care recipients suffer from dementia. As would be expected, dementia caregivers provide more hours of care (19.0 vs. 12.5 hrs), more types of care, and were more likely to help with personal ADLs than were non-dementia caregivers (National Alliance on Caregiving and Alzheimer’s Association, 1999).

The proximity of the caregiver to the care recipient is a critical factor in determining the pattern of care. In particular, if the caregiver and care recipient coreside, there will be greater caregiving involvement and less use of formal services (Chappell, 1991; Diwan, 1997; Tennstedt et al., 1993a), regardless of caregiver relationship (Tennstedt et al., 1993a). Coresidence is more likely for dementia caregivers, especially at later stages of disease, which likely accounts for the greater caregiving involvement when compared to all non-dementia caregivers. Yet, the relationship between coresidence and lower use of selected dementia services has also been reported (Gill et al., 1998). Proximity to the care recipient is less of an issue in the provision of short-term or "crisis" care. Himes and colleagues (1996) have reported no difference in amount of care by those living with or very near the care recipient and by those caregivers more distant when the care was for a time-limited period. This is less relevant for primary caregivers in the care of elders with dementia, underscoring the importance of proximity or coresidence in the provision of care.

The employment status – a competing responsibility – of the caregiver has been related to the level of care provided, but results across studies have been quite inconsistent. However, most studies including the NAC/AARP survey (1997) report that employment has no effect on the amount of care provided. Instead, it appears that employed caregivers make accommodations in their work schedule or arrangements in order to meet caregiving responsibilities.

Ethnic or racial differences in types and amounts of care have also been studied. At the bivariate level, many studies (National Alliance on Caregiving and American Association for Retired Persons, 1997; Hays and Mindel, 1973; Cantor, 1979; Mitchell and Register, 1984; Tennstedt et al., 1998) have reported that minority caregivers provide more care than do White caregivers. Typically, cultural differences (e.g., greater familial reciprocity) have been assumed to account for this. Others assert that the increased disability of minority elders accounts for higher levels of caregiving. In our cross-cultural comparative study, we found that even when controlling for disability, caregivers in the two minority groups provided more care than did White caregivers (Tennstedt and Chang, 1998).

It is commonly thought that the size and composition of the caregiving network influences the organization and provision of care. Larger networks of caregivers, closely related and/or very committed to providing care, are thought to result in sharing of caregiving responsibilities. This would seem particularly relevant in care for elders with dementing illness for whom needs for care are frequently great. The composition of the caregiving network evolves over time, influenced by the age, gender and race of the care recipient, but is generally stable (Peek et al., 1997). Burton and colleagues (1995) have reported that the number of caregivers does not differ by race although others have reported that minority elders have more caregivers due to the involvement of modified extended families (Chatters et al., 1985, 1986; Miller et al., 1994; Hatch, 1991; Cox and Monk, 1990).

Yet in light of these data, it has been reported consistently that the primary caregiver provides most of the care. In a study by Stommel et al. (1995), which included both dementia and non-dementia caregivers, the primary caregiver provided assistance with IADLs almost exclusively, but help with ADLs was shared with others. Data from this study revealed no specific threshold at which secondary caregivers are involved, but involvement was more likely when a high frequency of care was needed. The primary pattern of division of labor was one of supplementation, i.e., that secondary caregivers shared the responsibility for specific tasks with the primary caregiver rather than a splitting up of tasks (or specialization) among the caregivers. Other data reported by these investigators (Stommel et al., 1998) indicate that division of labor is influenced by race. Consistent with the larger caregiving networks of African-Americans, these caregivers are more likely than White caregivers to share care with secondary helpers but again remain involved in most activities.