Empowering caregivers to better manage DM patients’ neurobehavioral symptoms

Myotonic dystrophy type 1 (DM1) is present with an extensive involvement of the central nervous system, leading to symptoms such as excessive fatigue and sleepiness, lack of motivation, peculiar personality traits and cognitive deficits including organization, decision-making, and interpersonal difficulties. All these features greatly impede on patients’ daily living autonomy, health management as well as on patients and caregivers’ social participation. Furthermore, misunderstanding of these unapparent symptoms often bring family and social conflicts. Briefly, most DM-patients and caregivers complain more about neurobehavioral features than about muscular symptoms that are the hallmark of the condition. The present project aims to develop and transfer information and practical advices into multimedia products to empower caregivers regarding neurobehavioral symptoms (NS) of DM1. These products would take the form of guides and video capsules that could be directly placed on the MDC website. The innovative aspect of this project lies on the fact that products will be based on problematic day-to-day life situations exposed by patients and caregivers called “partners”, as they are part of the research team in all study steps. A better understanding/management of NS through personalized multimedia products using patients and caregivers’ experience may improve the patient-caregiver relationship, provide a greater and longer patients’ autonomy, and increase social participation.