Duration of AAC technology use by persons with ALS

The purposes of this research report are (1) to document the duration of augmentative and alternative communication (AAC) technology use by 45 persons with amyotrophic lateral sclerosis (ALS), 7 of whom were still living (with mechanical ventilation) and continue to use the technology; (2) to identify factors that might influence duration of AAC technology use; and (3) to report the AAC technology donation trends of families after persons with ALS are no longer living. The duration of AAC use varied considerably across participants; however, the mean duration was 28.4 months for all participants, 25 months for persons with primary bulbar ALS, and 34.2 months for those with spinal ALS. Review of the data reveals that invasive ventilation and timeliness of referral for AAC assessment have a greater impact on duration of AAC use than ALS type. Of those with ALS who were no longer living, 60% of their families had donated AAC devices to an AAC loan program or to another person with ALS, 32% retained the device, and 8% returned loaner devices to the equipment lending program that had originally provided the device.