L'engagement des aidants dans le traitement pharmacologique de la maladie d'Alzheimer: une experience construite sur laresponsabilite morale a l'egard de leur proche.

摘要

Problem statement: The burden of caregivers may be partially explained by ethical issues involved in the experience of caring. Among these issues is the pharmacologic treatment of Alzheimer's disease, although this is seldom covered in the literature and barely addressed by provincial policy with respect to people with Alzheimer's. Pharmacologic treatment appears to improve cognitive functions, functional capability and behaviour in those suffering from Alzheimer's', reduce the time required daily for care and delay placement. However, this treatment has little impact on the burden and the quality of life of caregivers.;Theoretical Framework and Methods: This constructivist study uses Levinas's ideas of the Other and Mead's symbolic interaction as a conceptual framework. Semi structured interviews conducted from a grounded theory perspective with twenty caregivers have brought to light two closely-related theoretical models which explain the construction of moral responsibility in the caregiver with respect to the pharmacologic treatment of a loved one with Alzheimer's.;Results: Pharmacologic treatment is not seen as something separate, a "third party" that the caregiver turns to in order to abdicate responsibility for the loved one. On the contrary, the commitment of caregivers to the treatment rests essentially on the moral basis of their responsibility to the loved one. In this, the parameters of the relationship of caregiver to care-receiver are pivotal.;Discussion: The data collected tentatively suggest that there are new determinants in the burden of caregivers. We refer here to an overly great reciprocity and too strong a resilience, which reinforce the call to take responsibility. In a follow-up to our study, exhaustion may be found to be the consequence of the gradual process of responding to the call to take responsibility in order to preserve the parameters of the relationship. The importance of the type of relationship also involves commitment to the treatment. Participants perceived the treatment as a holistic. For them, treatment serves to maintain functional capabilities as much as to control disruptive behaviour, so that it involves other medications and even attitudes towards the loved one. Thus defined, treatment no longer belongs to the medical world, but takes its place in the social, environmental and interpersonal world of the loved one, of which the caregiver is an integral part. This broader definition of treatment contributes to elevating this role into one of moral responsibility, instead of being merely a task to accomplish.;Key words: Caregiver, Alzheimer, moral responsibility, grounded theory, pharmacologic treatment.