CAREGIVING BURDEN - MAKING THE CONCEPT SCIENTIFICALLY USEFUL AND POLICY RELEVANT

This article critically examines the burden concept, its lack of clear definition, the inconsistency between its conceptualization and operationalization, its inappropriate use within the stress paradigm, and its marginal policy relevance. A needs-based conceptualization of burden is presented in which burden is defined in terms of frustration of basic needs arising from five characteristics of family care for frail elderly people: awareness of degeneration, unpredictability, time constraints, the caregiver-receiver relationship, and lack of choice. These contributors to burden are called crises of decline to contrast with the experiences normally encountered through child care. The model has received empirical support and represents a reconceptualization that not only accommodates the increasingly popular stress paradigm but also provides a bridge between research that focuses on burden as an individualistic phenomenon and research that links dominant caregiving practices with social injustice.