Evaluation of overloading on caregivers of people with Amyotrophic Lateral Sclerosis (ALS)

Introduction: Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder that results in the selective death of motor neurons, with weakness and generalized muscle atrophy as primary symptoms. With cure yet to be found, the patients in treatment need assistance in mobility and daily activities. Taking care of a patient with ALS results in varying degrees of burden and time, demanding stress reduction strategies and an increase in the quality of life of caregivers. In this sense, support groups emerge as alternatives. Objective: The aim of this study was to assess whether caregivers of patients with ALS exhibit burden and the possible benefits from participating in a support group specifically designed for them. Method: This is a cross-sectional descriptive study that applied the Zarit Caregiver Burden Scale and Interview regarding participation in the “Hope for ALS” support group, at a public hospital in Recife, Brazil. Seven families’ caregivers and one professional caregiver were assessed. Results: Data analysis showed that most caregivers exhibit moderate burden and nearly all live with the patient, which may contribute to limitations in their lifestyle. Participation in the group is recognized by all as a source of exchange and learning about the disease, also an opportunity to discuss emotional issues and caregiving difficulties. Conclusion: It is concluded that these caregivers display moderate burden and that they benefit from the support received from the Hope for ALS group. However, other strategies may be needed to minimize this burden and improve patient care safety