Perceptions and Experiences of Nutrition Interventions in Individuals with Amyotrophic Lateral Sclerosis (ALS) and their Caregivers

Abstract

Nutrition concerns are prevalent in individuals with Amyotrophic Lateral Sclerosis (ALS). Despite the prevalence of nutrition concerns, few data are available on perceptions and experiences of nutrition interventions in individuals with ALS and their caregivers; this study aimed to collect this information. An online survey was developed and hosted on Survey Monkey®. Individuals with ALS and their caregivers from Saskatchewan, Canada, were invited to complete the survey through email to attendees of the ALS Clinic (Saskatoon, Canada), and via the ALS Society of Saskatchewan Facebook page in February–March, 2021. Quantitative data were analyzed using descriptive statistics. Twelve eligible respondents completed the survey (n = 10 individuals with ALS; n = 2 caregivers). The present study found nutrition was important to respondents and there was interest in trying diets and supplements for ALS management; of note, many respondents were interested in exploring the ketogenic diet. Six (50%) respondents had weight loss concerns. All respondents would recommend consulting with a dietitian upon being diagnosed with ALS. Many respondents reported a predefined negative perception of tube feeding. The results of this study suggest that increasing the accessibility of dietitians could positively impact ALS-related care. The findings also provide guidance for dietitians to enhance nutrition care for individuals with ALS.