Informal Caregiving to Aging Family Members: A Critical Review

Abstract

Since the early 1980s, there has been an explosion of literature on caregiving to aging family members. This work appears in a variety of outlets, but mostly in gerontological journals, and somewhat peripherally in journals specifically focused on families. Within the family caregiving literature, there is great ambiguity around three significant questions: (a) What is caregiving? (b) What are the negative and positive outcomes of caregiving for caregivers? and (c) What is the relation between family or informal caregiving and paid or formal caregiving? Confusion in these three areas makes it difficult to compare findings across studies and to draw reliable implications for practice. Thus, we examine the literature on caregiving to aging family members with particular attention to the family aspect of caregiving, addressing these three central questions. Throughout this review, we note assumptions and empirical gaps in the literature, as well as the implications of this literature for researchers and for practitioners who work with family members, particularly the caregivers. WHAT IS CAREGIVING? Most commonly, family caregiving has been conceptualized as occurring when one or more family members give aid or assistance to other family members beyond that required as part of normal everyday life. Generally, family caregiving begins when aging family members require assistance due to debilitating chronic conditions or diseases, such as severe arthritis, significant sensory loss, Parkinson's Disease, Alzheimer's Disease, or when they are otherwise frail. A review of the family caregiving literature, however, reveals that a clear and precise definition, which is essential for researchers and for professionals who work with family caregivers, is 1 missing (Barer & Johnson, 1990; Cantor, 1991; MaloneBeach & Zarit, 1991). Caregiving Versus Aid Caregiving is not always easily distinguished from aid given as a part of the normal exchange in family relationships. Some of the difficulty in defining family caregiving rests in the history and nature of the connection between the caregiver and the care receiver. Even when care receivers have similar levels of dependence, the help provided by family caregivers differs by gender and by generation (Dwyer & Seccombe, 1991). For example, using data from the 1982 National Long-Term Care Survey and the associated National Survey of Informal Caregivers, Dwyer and Seccombe (1991) found that caregiving husbands reported giving more care than wives. The authors suggested that caregivers report activities that are not ordinary for them or that are not part of their normal responsibilities. As wives and/or mothers, women perform many tasks, such as laundry, meal preparation, house cleaning, and so on, that are included in measures of instrumental activities of daily living (IADLs; e.g., laundry, meal preparation). Because IADLs are consistent with everyday household work (Sankar, 1993), wives may not consider such tasks to be caregiving activities, but husbands, who are less often involved in household work, and who take on these tasks primarily because their wives are unable to do them, see dusting and vacuuming as caregiving. In the same way, daughters may distinguish the tasks they do in their own households from those they do in the homes of their mothers and fathers. Cleaning house is typically a responsibility of wives in their own homes, but having to do so in another house is caregiving. Similarly, in the National Health Interview Survey, men aged 75 and above were less likely than women to report needing assistance with IADLs, but equally likely to report needing assistance with activities of daily living (ADLs), such as bathing and walking (Pratt, Sasser-Coen, & Acock, 1993). Perhaps older men did not see in themselves a need for IADL assistance because someone had always done these tasks for them, but help with grooming, bathing, and dressing was recognized as aid. …