When people suffer from cognitive diseases impacting memory, as it is for Alzheimer's, the issue is deep: memory is the foundation of self-knowledge. The memory makes possible to know who one is as a person. With the alteration of this capacity arise many doubts, related in particular to the consent that one is able to give or not.
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The volunteers
"What's good?", "What is right? ", "What do I have to do ?", "Even if I can do it, should I? "... complex questions related to the notion of ethics that future volunteers will face within the Village Landais Alzheimer. The doctor Geneviève Pinganaud, geriatrician doctor from the CHU of Bordeaux and member of the Committee of ethics of the Village, came to share her experience with them.
And this question comes up regularly in the interrogations of the listeners: "Who decides at the end?". Geneviève Pinganaud explains: "We will seek the consent of the patient as long as possible despite the evolution of his condition, even if the person does not remember. We must take the consent in the moment." The professor insists: "The autonomy of the vulnerable person is our priority. "
In their testimonials - often heavy and poignant - some participants emphasize the complexity of a patient's moments of lucidity. Those moments are experienced with as much difficulty as the moments of absence or non-recognition because the patient expresses his frustration at being a "burden" for his family. Nathalie Bonnet, psychologist and volunteer with France Alzheimer, says: "The fact that the person can express it shows that they are aware of our presence. They can say it and see it. It's essential. "
Ethic and volunteers
While in France the concept of care is first thought of as a professional act, the English meaning of the word "care", which introduces the idea of "taking care", better expresses the complementarity of the accompaniments of people suffering from impairments that go beyond the only medical aspect. At the heart of this action by the animation that they propose and their benevolent presence, the future volunteers are an integral part of the actors of the Village and the questions related to ethics affect them as much as the professionals who master the technical aspects of the care
Florence Laudouar, coordinator of animation and volunteering at the Village, reassures the volunteers: "You will not be alone, the team will be with you at all times." And Geneviève Pinganaud added: "The benevolence that is expected of you in your relationship with residents, you must also grant it to yourself. "
A psychological support is planned to help all Village teams to share the difficulties encountered.
In ethics, there is not always a solution, but an understanding of the situations that everyone faces is an essential first step. On this theme, the Village Landais Alzheimer opens a space of creativity to imagine and find innovative solutions to these questions. The work of the teams within the Ethics Committee is just beginning.
