Family Caregivers on the Job: Moving beyond ADLs and IADLs

How to convey the range and complexity of the tasks required? Ask any professional in the field of aging what family caregivcrs do and the answer is likely to be, they help an elderly or ill person with ADLS and IADLS. In the prevailing paradigm, the caregiver's assistance compensates for the care recipient's difficulty performing one or more of the of daily living, a term used to refer to such basic endeavors as bathing or using the toilet, or the instrumental activities of daily living, referring to shopping, transportation, and the like. What the family caregiver does is assumed, at least implicitly, to be die mirror image of the care recipient's limitations. According to Feldman and Kanc (2003), ADLS are probably the single most important research-based concept underpinning [long-term care] ... in many respects equivalent to Freud's work in establishing a conceptual framework in psychiatry (pp. 184-5). It is daunting to challenge, however humbly, the concept that in the world of long-term care is the equivalent of the Freudian fundamentals. Nevertheless, we believe that in today's world, measures of ADLS and IADLS, which were designed to describe care recipients' limitations, do not convey die full spectrum or degree of complexity of die family caregivcr's responsibi l itics. Yet, because ADL and IADL needs are often used or proposed as thresholds for benefits and services, standards of incorporating them have significant implications for families and for public policy. And although several researchers have described caregiving much more broadly, their contributions have not been incorporated into usual practice or policy. THE EVOLUTION OF ADLs AND IADLs Measurement of ADLS was developed in die late 19505 to describe functioning-and functional limitations -of ill or disabled older adults. Katz and colleagues (1963) developed a measure of six ADLS (bathing, dressing, using the toilet, transferring [from bed to chair, for example], continence, and feeding) to study results of treatment and prognosis in older adults hospitalized with hip fractures (and, later, other diagnoses like cerebral infarction and multiple sclerosis). To supplement measurement of ADLS, Lawton and Brody (1969) created a measure of eight instrumental activities of daily living or IADLS. Many older adults might be independent in all ADLS but not able to function independently in die community because they cannot shop, cook meals, perform housework, do laundry, handle money, manage transportation, use die telephone, or take medications on their own. Lawton and Brod/s IADL measure was designed to assist in developing a care plan and aid in teaching and training helping professionals. Since die 19705 more titan forty ADL and IADL measurement instruments have been developed (Feinstein, Josephy, and Wells, 1986); Robert Kane and Rosalie Kanc (2000) provide reviews of the most commonly used. Despite almost universal acceptance of diese instruments, measurement errors and difficulties in comparability arise with their use, even among the population for which they were originally intended (Weiner et al., 1990; Matiiiowetz and Lair, 1994). While in die literature researchers specify which measures they use, in policy forums diese distinctions are usually lost, and ADL and IADL measures are conflated into die simplest version. Use of ADL and IADL measures moved from research on older adults to research 011 family carcgiving in die 19805 and 19905 (Farran, 2001). Early studies focused on die burden tiiat families experience in caring for an ill or disabled family member (see Gaugler, Kane, and Laiiglois, 2000 for a current review of instruments to measure burden). Perhaps die most influential work linking ADLS and IADLS to family caregiving comes from the conceptualization of family caregiving as a stressful experience by Pearlin and colleagues (1990). These authors hypothesized diat the care recipient's need for help with ADLS and IADLS is one of die primary objective Stressors (or care demands) tiiat lead to such effects on caregivers as depression, feelings of burden, and declines in physical healdi. …