Necesidades de los cuidadores de pacientes con enfermedad lateral amiotrófica: estudio piloto sobre una intervención multidisciplinar

Abstract

Amyotrophy lateral sclerosis is a disease that causes disability, chronicity and physical handicap. Moreover, the dependence of the patient will increase.

Objectives

To assess the efficacy of specific interventions designed to train non-professional caregivers of patients diagnosed with amyotrophic lateral disease.

Method

Descriptive cross-sectional study of an intervention designed for non-professional caregivers of patients with ALS. Pilot study. The target audience of this study are non-professional caregivers of patients with ALS. The level of dependence of the patients is measured with the Barthel index, the Revised Scale of Functional Assessment of Amyotrophic Lateral Sclerosis and Cognitive Behavioural Screening in ALS. The needs of these patients’ caregivers were evaluated according to the Kreutzer questionnaire. A multidisciplinary intervention designed to modify this situation was designed and reevaluated.

Results

Finally, seven caregivers were included in the pilot study. They were women, with an average age of 56 years, partners of the patients, with parallel economic activity and with an average level of education. The patients were men with a mean age of 63 years and 1-3 years of disease duration; they presented a moderate-mild Barthel, cognitive impairment, gross motility and respiratory function. The most demanded needs were for «medical/health information» and «involvement in treatment and care».

Conclusion

Specific interventions to meet the needs of non-professional caregivers are highly effective. Using tools that identify them contributes to improving caregivers’ care.