Amyotrophic Lateral Sclerosis in Argentina: an approach to the realities of people with ALS and their care environments in the year 2023.

Abstract

Introduction. This article explores and analyzes the daily experiences and realities of the universe of people diagnosed with Amyotrophic Lateral Sclerosis (ALS) and their care settings in Argentina in 2023. Methodology. The results of a self-administered online survey conducted from May to July 2023 on people with ALS and primary caregivers are presented. The study included the participation of 111 people: 56 diagnosed with ALS and 55 primary caregivers. Results and discussion. 71.7% of the people diagnosed with ALS surveyed considered their household income to be insufficient to meet their expenses. Reaching the correct diagnosis takes in most cases more than a year. The primary caregivers surveyed carry heavy caregiving workloads that, in most cases, exceed 8 hours daily. In addition, they show higher levels of exhaustion, discouragement, nervousness, and discomfort than people with ALS who participated in the study. Those who assume the role of primary caregivers are mostly women, which coincides with the evidence provided by the field of caregiving, which points to the close relationship between gender and caregiving. It is evident the pressing situation that people with ALS and their caregivers go through both economically and in terms of physical and emotional health. Conclusions. Based on the study's findings, a set of considerations and recommendations are offered to inform the design of policies and actions aimed at improving the situation of people with ALS and those who assume the role of primary caregivers. It also identifies possible future lines of research that would broaden and deepen the findings presented here.