Kudos to Chip Bailey, associate professor, and his entire team for the submission of his NIH R21 application entitled: “Communication Intervention for People with ALS and their Care-Partners." This proposal requests funding for a two-year period with a start date of July 1, 2022. 

Amyotrophic Lateral Sclerosis (ALS) affects about 30,000 individuals in the US with 5,000 people diagnosed each year; the progressive neuromuscular life-limiting disease occurs in people between the ages of 40-70 but can occur in younger ages. As people live with ALS, they become increasingly reliant on a care-partner, usually a spouse or family member who provides increased levels of support to maintain social network engagement. Up to 95% of people living with ALS are challenged by the inevitable loss of speech that interferes with day-today communication and social interaction. Communication is critical to maintain functional and social conversation, social engagement, and quality of life. Augmentative and alternative communication (AAC) strategies compensate for loss of speech and improve quality of life. Unfortunately, AAC strategies are most often used for communication of basic needs rather than to support social conversation, which is essential for sustaining the networks that promote social engagement and quality of life for the dyad. The use of AAC strategies in conversation remains low due to both patient factors such as the desire to communicate via speech as long as possible, and avoidance of device use, and care-partner factors such as insufficient training and perceived burden. ALS-related cognitive challenges that affect both members of the dyad can also contribute to poor uptake. Interventions to address these challenges largely fail to account for the important role of care-partners and the value of continued social engagement for the person with ALS. However, interventions that promote shared meaning between the dyad regarding challenges encountered during social conversation when using AAC strategies, and how these strategies can be effectively deployed in conversation, hold great potential to move beyond only using AACs to communicate unmet basic needs, to use of AACs to more fully engaging in social life by sustaining existing social networks. To address this gap, we aim to co-design and test an intervention to improve the use of AAC strategies in social conversation for people with ALS, their care-partners and their social networks, building upon an existing person-centered approach. This single center, mixed methods study will build upon findings from our pilot data on the social networks of ALS dyads and stakeholder interviews to co-design the Partners in Adapting to Conversation through AAC Technology (PACT) intervention to enhance self-efficacy of the dyad for AAC use in conversation. There are two specific aims: 1) Co-design and manualize the PACT intervention to develop and adapt AAC strategies for conversational use in people with ALS, their care-partners and social networks; 2) Test the feasibility, acceptability and obtain preliminary evidence of impact on target outcomes (self-efficacy for AAC device use in social conversation with care-partner and social network, QoL) of the PACT intervention (N=12 dyads) delivered by a Speech Language Pathologist, person with ALS and care-partner serving as peer mentors in a video-conferencing format.