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Updated: Jul 18, 2026

A Protocol for Comprehensive Assessment of Bulbar Dysfunction in Amyotrophic Lateral Sclerosis (ALS)
Published on: February 21, 2011
Purposes of AAC device use for persons with ALS as reported by caregivers
Melanie Fried-Oken1, Lynn Fox, Marie T Rau
1Oregon Health & Science University, Oregon Institute on Disability and Development, P.O. Box 574, Portland, OR 97207, USA. friedm@ohsu.edu
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 (1988) 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.
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