Assessment of care burden and health status of primary caregivers of patients with amyotrophic lateral sclerosis

Assessment of Care Burden and Health Status of Primary Caregivers of Patients with Amyotrophic Lateral Sclerosis Objective: Amyotrophic Lateral Sclerosis (ALS) is a devastating disease that primarily focuses attention on the patient due to its progressive nature and multifaceted impact. However, the crucial role of caregivers in managing the disease is often overlooked. Caregivers of ALS patients frequently bear a significant burden due to personal and social restrictions, as well as physical and emotional challenges. In addition to the emotional difficulties, providing care for ALS patients—especially in the later stages—requires a high level of knowledge, physical effort, and dedication. Increased caregiver burden not only negatively impacts their own health but also has adverse effects on the health outcomes of the ALS patients they care for. This study aims to assess and evaluate the caregiving burden and health status of caregivers, who play a crucial role in the management of ALS patients. Materials and Methods: The study included ALS patients residing in the city center of Antalya, who were monitored at Akdeniz University Faculty of Medicine and Antalya Training and Research Hospital Neuromuscular Clinic, as well as those registered with the ALS Association Antalya Branch. The caregivers of patients diagnosed with ALS according to the Gold Coast criteria and evaluated at least twice in three-month intervals were included in the study. To assess the sociodemographic and clinical characteristics of the caregivers, a "Sociodemographic Data Form" was used. The "Zarit Caregiver Burden Scale" was employed to evaluate caregiver burden, and the "Brief Symptom Inventory" was utilized to determine psychological symptoms and overall health status. Caregivers were interviewed during home visits, where they expressed feeling more comfortable discussing their experiences. Beyond the scope of the study, patients' experiences and the challenges faced by caregivers were addressed, and supportive discussions were provided. The data were analyzed using SPSS version 22.0, with Mann-Whitney U test, Kruskal-Wallis test, and Spearman correlation analysis applied for comparisons. A p-value of <0.05 was considered statistically significant. Results: Between December 2023 and April 2024, interviews were conducted with 55 primary caregivers of ALS patients. Among the participants, 60% were interviewed at home, while 40% completed face-to-face surveys in the hospital. The caregivers' demographic distribution showed that 70.9% were female, 61.8% had completed only primary school education, 83.6% faced financial difficulties, and 60% had a chronic illness. Furthermore, 69% of ALS patients were primarily cared for by their spouses. As the daily caregiving duration increased, both the caregiver burden and psychological distress significantly escalated. A statistically significant correlation was found between caregiver burden and overall health status among all participants. The burden and health impacts experienced by caregivers were found to be significantly higher than expected. Additionally, as the caregiving burden increased, the demand for state-supported professional caregiving services also rose, indicating a growing need for external support to share the load. Conclusion and Recommendations: Advancements in medical technology have extended the life expectancy of ALS patients, consequently increasing the duration of caregiving responsibilities for caregivers. The rising number of elderly caregivers, coupled with increasing life expectancy, means that caregivers are often managing their own chronic illnesses while providing care. Throughout this process, caregivers face significant physical, psychological, social, and economic challenges. Findings suggest that reducing caregiver burden is linked to improved health outcomes for caregivers, supporting the study hypothesis and aligning with existing literature. Implementing various measures to alleviate caregiver burden may have a protective effect on caregivers' health, where primary care physicians can play a pivotal role as key supporters. Therefore, it is recommended that a multi-tiered healthcare approach be adopted for ALS patients, ensuring that the challenges faced by caregivers are given greater consideration within primary healthcare services. Keywords: Amyotrophic Lateral Sclerosis (ALS), caregivers, care burden, mental health, Family Medicine