The caregiver in neurodegenerative diseases: myths or realities?

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If our health system were a plant, caregivers or natural caregivers would be its very vital but fragile and invisible roots. According to figures provided by the OECD, the percentage of informal caregivers differs greatly from one country to another, varying between 8 and 16% of the national population. The contribution of family caregivers, especially in the field of neurodegenerative diseases that strongly impact the autonomy of patients, is in reality the invisible support that allowsour health system to avoid breaks in the care process through the deinstitutionalization of patients. '' part of the care through the logic of close assistance. However, we note that our health systems are not yet predisposed to institutionalize the role of caregivers in supporting dependent patients suffering from a neurodegenerative disease in its final stages. In this perspective, fits our reflection which aims to explore this unbalanced relationship between these two actors, visible (caresystems) and invisible (natural caregivers or informal caregivers) whose roles are complementary and compatible on the one hand. , and analyze the ethical issues arising from it on the other hand. The methodological approach adopted to try to answer the various questions around the concept of "caregiver" is based on the conceptualization of a framework for analyzing the values involved in caregiving in relation to the management of neurodegenerative diseases. .