In search of personal care

Abstract

In addition to medical and bodily needs, personali(ized) care involves the biographical and social identity of the recipient. Care-work always requires some adaptation to individual preferences and responses. But typically this is either an implicit or a secondary feature of care. However, with chronic, cognitive illnesses such as Alzheimer's disease, the very capacity for maintaining self (e.g. memory and language facility) is threatened, and so the extent to which care addresses the person qua person becomes especially significant: For the afflicted, personalized care is identity care. Our analysis is based on paid work and field research in "quasi-institutional" residential care settings for the elderly; such settings claim to support collaboration between formal (paid) and informal (family) care-givers. We find that, despite its sentimental folk meaning, there is no simple consensus regarding the meaning or practices of personal care. We first develop a conceptual and empirically grounded definition; we then discuss its diverse meanings for the various groups involved in paid elder care and reflect on their practical implications for the fulfillment of the ideal. Our research shows that obstacles to personal-as-identity care are not confined to large bureaucratic or medicalized institutions. Among the obstacles we find in residential care are instrumental definitions of care among paid workers and the public at large; a "familial" division of labor lacking specific provision for such care; and emotional demands of the care, from which families seek relief. Even when those concerned do orient care to preserving identity, there is tension regarding whether to treat identity as object(ive) or as process.