ACCompagnant de MAlades DIagnosés Alzheimer

The ACCMADIAL (for ACCompagnants des MAlades DIagnostiqués ALzheimer) research project, initiated in 2016, sets out to study the experiences of caregivers[1], how they see themselves, but also how they experience the illness of their loved one with Alzheimer's.

This project, anchored in Western France (notably Brittany and Pays de la Loire), operates through a partnership with civil society and institutional players. This research project is thus based on interviews with volunteer carers spaced 6 months apart; the study is based on their own putting into words to understand their experience as an individual reality co-constructed from the social gaze, to identify their strengths and weaknesses and, finally, to intervene on this socio-health reality.

As an object of research, the Alzheimer's caregiver raises a wide range of questions, from the ethical (the question of dignity for the caregiver and for the patient), to the social (caregivers who have difficulty recognizing themselves under this designation, the difficulty of talking about this status to people who are not confronted with the disease..), societal (the need to take care of one's spouse or parent, the lack of support for caregivers in the workplace...) and medical (the caregiver's health is sometimes neglected in order to stay at the patient's side...). If we turn to the more micro consequences, this questioning also focuses on the role of the interview with the caregiver (and the discourse produced by the caregiver), on its various interrogations: how do caregivers define themselves? How do they experience their loved one's illness? How do they put into words their emotions, their awareness of the bond (social, family, friendship...)? How do caregivers deal with the issue of the patient's dignity? How do caregivers forge affective and social bonds likely to bring comfort and pleasure to the sick person when they themselves are suffering?

[1] The project presentation can be accessed at the following link: https://vimeo.com/671328529. The research project website can be accessed at the following link: https://www-aidant-alzheimer.univ-ubs.fr.