2022 Volume 39 Issue 3 Pages 126-129
The aim of this report was to reconstruct the author's presentation at a symposium on community care and therapeutic issues for patients with intractable neurological diseases at the 39th Annual Meeting of Japanese Society of Neurological Therapeutics, held in Tsu, Mie, in October 2021. Two topics were discussed : longitudinal trends of the number of patients with amyotrophic lateral sclerosis (ALS) in a single prefecture, and communication between people with ALS and healthcare professionals, including through non–motor symptoms of ALS. Regarding the former, our observation showed a decrease in domiciliary ALS patients with tracheostomy and ventilation (TIV), although the total number of ALS patients with TIV did not decline. Some possible issues around the decrease were discussed. Regarding the latter : some proposals for better communication between people with ALS and healthcare professionals were discussed, based on the results of short–term educational practice sessions about augmentative alternative communication (AAC) for patients with ALS attended by undergraduates in multiple healthcare disciplines at 4 universities. We found that the participants' knowledge of AAC was retained 6 months after completing a single short training program and that hands–on AAC experience helped them develop their skills and reduce the perceived subjective burden. As a next step, e–learning based AAC practice sessions were experimentally introduced amid the COVID–19 pandemic.
