Purposes of AAC device use for persons with ALS as reported by caregivers

TLDR

The study surveyed 34 informal caregivers of 26 ALS patients using a newly developed Communication Device Use Checklist that lists 17 communication purposes and asks respondents to rate importance, mode, and frequency. Caregivers reported that AAC most frequently supports basic needs regulation (getting needs met, giving instructions, clarifying needs), maintaining social closeness, and sharing important information, with face‑to‑face spontaneous conversation being the dominant mode despite its demands, underscoring AAC’s role in sustaining relationships.

Abstract

Thirty-four informal caregivers who support 26 persons with ALS reported on AAC technology use. Each caregiver completed the Communication Device Use Checklist, a survey tool developed for this study based on Light's () classification of the purposes of social interaction (Augmentative and Alternative Communication, 4, 66 – 82). The checklist includes 17 purposes of communication and asks participants to judge importance, mode, and frequency of use for each purpose. Results show that the three communication purposes used most frequently and valued as important by caregivers involve regulating the behavior of others for basic needs and wants (getting needs met; giving instructions or directions to others; and clarifying needs). Consistent reports of use and frequency for the purposes of staying connected (social closeness) and discussing important issues (information transfer) indicate that AAC technology can assist the dyad in maintaining previous relationships. The face-to-face spontaneous conversation mode is used most frequently, despite the slow rate of production, the lack of permanence, and the demands on conversational partners during message generation. Clinical and research implications are discussed.