Caregiving in the Face of Non-motor Symptoms in Amyotrophic Lateral Sclerosis: a Critical Review

This paper presents a critical account of research into the non-motor symptoms associated with amyotrophic lateral sclerosis (ALS). Although research examining the cognitive and behavioural features of ALS has been extensively report ed, social communication and emotion recognition changes have not been comprehensively explored. Furthermore, the current research and diagnostic criteria for diagnosing such changes, which have served as a useful conceptual model, do not provide a means of assessing the subtle cognitive changes reported in non-demented ALS patients. In addition, the impact and challenges of providing care for a person with a diagnosis of ALS who is also experiencing changes in cognition and behaviour have been explored only tangentially in the literature, and require immediate attention. We argue that the establishment of criteria to detect mild cognitive impairment may serve as a useful model to provide effective clinical interventions for both patients and caregivers at the earliest possible moment.