Necesidades formativas en el cuidado de personas con diagnóstico complejo de esclerosis lateral amiotróficapropuesta y orientaciones sobre formación dirigida a familiares cuidadores

Laburpena

Rare diseases require specialized care. ALS is considered a relatively rare disease, despite the low prevalence (0.4%) of neurodegenerative diseases. People diagnosed with ALS require being looked after in a continuous, uninterrupted and specialized manner. This topic has been studied directly from the experience of the families and caregivers of people diagnosed with ALS. This approach has revealed the lack of support for those families and the lack of the specialized resources needed both by the person diagnosed with ALS and the family members who become caregivers. The aim of this thesis is to propose orientations to improve this reality. These orientations must come from an active and participatory role of family caregivers and people with ALS, so that they can become the driving force behind the actions that improve their situation.