[en] Introduction: Amyotrophic Lateral Sclerosis is a chronic and a degenerative disease which involves upper and lower motor neurons and usually bulbar muscles too. Characteristic symptoms are muscles weakness, difficulty to talk and to swallow and respiratory failure. ALS is a multifactorial disease, and it is associated to the death of the patient in a time of three to five years. Actually, a cure doesn't exist, but there is a drug treatment, riluzole, which has proved increase the life expectance. The patient is going to become more dependent over time, indeed he will need nursing care at hospital and at home. Although nursing care, the burden of caregiving is for the informal caregiver, usually a patients' relative, who will need to learn knowledges and abilities to carry out the caregiving. They are going to need information and emotional support so their caregiver role doesn't affect their quality of life. Objectives: Identify the nursing interventions on the patients with ALS and their caregivers. Methodology: A systematic review was made by searching in databases like Medline, Cochrane, Dialnet, LILACS and other resources. Results: Finally, five studies and one book were obtained which adapt to the search criteria. In them, the nursing own activities on the patient with ALS and his caregiver were identified. The perceived needs of informal caregivers were identified too. Discussion: There are few studies that not relegate to a second place the role of the nurses, giving more importance to other professionals, when actually nurses must be the subject of the caregiving and their interventions should be understanding as a key of caring. Conclusions: There is a need which is that nurses assumes the activities which are their, and that activities should be included in a Guideline or in a Protocol which decreases the clinic variability and guarantee a individual valuation, the caregiving and the access to the disease information and the sanitary education for the patients with ALS and their caregivers.

[gl] Introdución: A Esclerose Lateral Amiotrófica é unha enfermidade crónica e neurodexenerativa que afecta ás motoneuronas superiores e inferiores e pode presentar afectación bulbar. Os síntomas máis característicos son a debilidade muscular, dificultade para falar, tragar e dificultade respiratoria. Considérase unha enfermidade multifactorial, cuxa esperanza de vida sitúase entre os 3 e os 5 anos e para a que actualmente non existe cura. Este paciente será cada vez máis dependente, precisando coidados de enfermaría tanto no medio hospitalario como comunitario, aínda que a maior carga asistencial será para o coidador informal principal, habitualmente un familiar do paciente, que vai precisar adquirir os coñecementos e habilidades necesarias para levar a cabo as tarefas de coidado, así como información e soporte emocional para que o seu rol como coidador non remate por afectar á súa calidade de vida. Obxectivos: Identificar as intervencións propias da enfermería sobre o paciente con ELA e o seu coidador principal. Metodoloxía: Revisión Bibliográfica sistemática a través das bases de datos Medline, Cochrane, Dialnet, LILACS e outros recursos. Resultados: Localízanse un total de 5 estudos e un libro axustados aos criterios de busca. Identifícanse os puntos claves da actuación das enfermeiras sobre os pacientes con ELA e o seu coidador principal. Identificanse as necesidades percibidas polos coidadores informais. Discusión: A maior parte de estudos relega á enfermería a un papel secundario, dando máis importancia a outros profesionais, cando as enfermeiras deberían ser protagonistas dos coidados e s súas intervención entenderse como clave. Conclusións: Demóstrase a necesidade de que as enfermeiras asuman as tarefas que lle son propias, e estas deben recollerse nunha Guía ou Procolo que reduza a variabilidade clínica e que garanta a valoración individualizada, a prestación dos coidados e o acceso á información/educación sanitaria do paciente e familia.