France Alzheimer 37 has been associated with the ISAMA project since 2018, conducted in Val d’Amboise on caregivers of people with Alzheimer’s. Its president, Dominique Beauchamp, describes a research with families – and what the field says about exhaustion.
You’ve been involved from the beginning. Why?
Dominique Beauchamp, president of France Alzheimer 37: “Clarisse Dibao contacted me for this research project. I attended the first meetings, I participated in the project from the start. I was involved in the questionnaire to see if it was understood by the caregivers. Doctors, when they do their research, tend to forget that their vocabulary is not the common language of everyone. I was there to make the questions more understandable, and especially to open up my network of caregivers.”
What emerged from the testimonials of caregivers in Amboise?
“What emerged is mainly isolation. When they have someone with Alzheimer’s with them, they no longer go out, they no longer see anyone. So they are completely isolated with the patients. Every family knows that. And since the disease lasts a long time, it is very exhausting for the caregiver.”
What solutions exist, and where does it get stuck?
“The solutions are caregiver respite. Propose human assistance: nurses, caregivers for tasks like hygiene, grooming, but also cognitive solicitations. There are daycares, half a day or a full day: it allows the caregiver to rest, or do things they cannot do otherwise. And temporary accommodations: leave the person in a facility for a few days. In Amboisie, it is no more complicated than in the Tours metropolitan area: there are services for the person, the ADMR, and near Amboise a temporary accommodation is emerging. But families are often lost: they do not know where to go, who to contact, how to ask. This research is also important because it shows that an association can work with scientists. This is what we call participatory research: the patient is at the heart of their health, at the heart of research.”
