Exploring Interactions Between Caregivers’ and Patients’ Stress and Mental Health in Amyotrophic Lateral Sclerosis (ALS)

Abstract

Amyotrophic Lateral Sclerosis (ALS) is a rare neurodegenerative disorder that is characterized by progressive muscle weakness leading to loss of mobility, speech, and ultimately death. While the disease’s impact on patients is well-studied, there is a significant burden placed on caregivers that is often overlooked. This research paper explores the relationship between ALS patients’ and caregivers’ mental health, highlighting the psychological burden that caregiving takes over time, which often intensifies as the disease progresses. The paper begins by presenting an overview of ALS, including its genetic basis and molecular structure, as well as the fundamentals of ALS. The paper then discusses the disease’s relentless and progressive nature and the limited scope of research, especially regarding diverse populations and ethnic groups. The paper also examines how ALS patients experience significant mental health challenges, such as depression, anxiety, and a reduced quality of life, which are often directly related to the disease’s worsening stages. Caregivers are tasked with managing numerous complex emotional, physical, and financial responsibilities, leading to chronic stress, depression, anxiety, and caregiver burnout. Current treatment options for ALS, such as Qalsody (Tofersen), Riluzole, and Edaravone, alongside multidisciplinary care for symptom management, offer some relief. Yet, there remains a significant lack of attention to caregiver stress and trauma, which have long-term detrimental effects on their health. The paper concludes by emphasizing the urgent need for more research into caregiving stress, improved caregiver support systems, and continued advancements in treatment options for ALS patients to enhance the quality of life for patients and their caregivers.