The burden of care: Health and wellbeing of informal caregivers of people with amyotrophic lateral sclerosis

Objectives Amyotrophic lateral sclerosis (ALS) is a rare, progressive, and fatal disease that impacts the lives of affected individuals and their caregivers. Informal caregivers play a crucial role in supporting people with ALS (pwALS), yet they face major challenges. This study aims to analyze caregiver burden and health status among informal caregivers of pwALS in Portugal. Methods A cross-sectional survey-based study was conducted with adult informal caregivers of pwALS in Portugal, recruited through the Portuguese ALS patient association and healthcare professionals. Data included sociodemographics, caregiving activities, caregiver health (SF-36), patient functional status (ALSFRS-R), and caregiver burden (ZBI). Results The study included 113 caregivers. Most were female (61.9%) and the partner (65.5%) or offspring (23.9%) of the pwALS. A quarter of caregivers received no social benefits. Mean ZBI was 32 ± 14.8, with most reporting mild to moderate burden. On the SF-36, general health was 51.1 ± 19.8, with mental health (55 [40; 70]) and vitality (43.8 [31.3; 56.3]) particularly impaired. ZBI scores correlated positively with caregiving hours ( r = 0.274, p = 0.003) and negatively with ALSFRS-R ( r = −0.411, p < 0.001). High burden caregivers exhibited poorer sleep quality ( p = 0.026). Significance of results Caregivers experienced mild to moderate burden, with impaired mental health and vitality, but preserved physical functioning. A higher burden was linked with lower quality of life, poorer sleep, and greater patient disability. These findings underline the need for targeted education and training to support caregivers of pwALS.