Informal care: Burden or significant experience?

A review of the scientific literature devoted to informal care of demented people has shown two ways of conceiving this form of help. The oldest and dominant one sees caregiving as a burden; the more recent and less frequently reported perceives caregiving as a significant experience for the caregiver but also for the care receiver. This paper will focus on this second perspective, and describe some of the meanings that the care experience can have. On an affective level, caregiving is situated in the context of the relationship history, caregiving being the occasion to foster intimacy. From a cognitive perspective, caregiving plays an important invisible part, which consists in interpreting the care receiver’s behaviour, of reflecting on the best way to adjust to it and defining care objectives. Reciprocity will be the last meaning explored, caregiving is seen as a way to give back all what the caregiver has received in the past, a way to continue the exchange with the care receiver. Some conditions must be met for caregiving to be a significant experience, providing the caregiver with the choice of giving without being exhausted by the amount of help required. This posits to recognize the “dependence work” allocation as a political question: far from being the exclusive responsibility of the family, help must be shared between formal and informal carers. Together, they will develop a “reflective practice”, recognizing each partner’s specific area of expertise. This will enable families to be able to receive professional help in a way that is more supportive than intrusive. Therefore, the way we look at informal help engenders not only anthropological and ethical questions, but also political challenges.