Durant ces cinq dernières années, avec la création des centres experts labellisés, la prise en charge des patients SLA et de leur entourage s’est considérablement améliorée.

Cet accompagnement multidisciplinaire a comme objectif, la mise en place d’un projet de soin commun, global et personnalisé. Il est à l’interface du médical, du psychologique et du social, prenant en compte la famille comme un pont nécessaire. C’est dans un tel contexte que s’est imposée la nécessité d’élaborer des réponses concrètes pour tenter d’aboutir à des recommandations consensuelles, à l’échelle de notre nation.

Concernant plus spécifiquement la question de « la prise en charge psychologique », nous nous proposons de définir le positionnement et le rôle du psychologue auprès des différentes populations approchées, et ses possibilités d’action, tout en abordant les exigences en terme de support psychologique pour promouvoir leur autonomie.

Loin des résultats scientifiques, ces pistes de réflexions montrent à quel point l’intérêt d’une prise charge aussi spécifique peut permettre le maintien de la vie psychique des patients et de leur entourage. Le psychologue à travers ses diverses interventions doit pouvoir répondre aux multiples demandes d’aides et aux questionnements individuels.

Amyotrophic lateral sclerosis is a devastating disorder for which the psychological consequences of both the diagnosis announcement and the evolution of paralysis not only concern the patient but also his family.

The role of the psychologist is to develop an individualized follow up considering the patient in his globality. The first consultation is, ideally, initiated after a medical consultation explaining the importance of the psychological area in ALS patient care.

The psychological follow up will consist in an empathic listening of history and problems. Information will also be given to the patient by the psychologist who’s role should not be only passive.

When talking about “globality” of the psychological intervention for a given patient, his family takes a determinant place. The psychologist should be able to establish a contact with the family members concerned by the daily support to the patient. The psychological processes through which a patient will evolve should be explained to the family. Depression frequently affects family members, and a specific follow up in those cases has to be undertaken as soon as possible. Such a depressive reaction may also take place after death and a psychological follow up do not end after the death of a patient.

The role of a psychologist in ALS care ideally takes places in the context of a multidisciplinary team such as a motoneuron clinic now largely available in our country. The burden of care is frequently heavy both for the family and the team of professionnal carers into and outside the hospital. The psychologist has a role of mediation between those persons, facilitating verbal exchanges, paying attention to specific difficulties and maintaining a fruitful exchange between the carers, the patient and his family.

More prospectively, the psychologist also has a pedagogic role for the carers explaining psychological processes and giving clues for a contructive relationship between the patient and his family and also between this patient and his carers.