Kudos to Chip Bailey, associate professor, and his entire team for the submission of their Duke Roybal Center proposal entitled: “Communication Intervention for People with ALS and their Care-partners”. This proposal request funding for a one-year period with a start date of June 1, 2021.

Amyotrophic Lateral Sclerosis (ALS) is a progressive nervous system disease that weakens muscles, impairs physical function and impacts quality of life; people with ALS and their care-partners report anxiety, depression and poor quality of life. These challenges are compounded by loss of speech that interferes with day-to-day communication and social interaction; 80 to 95% of people with ALS are unable to meet communication needs with speech alone and will require augmentative and alternative communication (AAC) devices to meet these needs. Training in AAC device use and communication strategies is integral to the care of people with ALS and allows for continued functional independence and engagement in activities of daily living. While devices are available through insurance or ample lending libraries, uptake and satisfaction with AAC devices remains low due to multiple factors, including care-partner factors and ALS-related cognitive and behavioral impairments. Social cognitive impairments, or a decline in the ability to perceive and interpret social behaviors of self and others, which are foundational to communication, are recognized as part of the ALS symptom profile. Although these are critical factors affecting AAC use, to date, interventions accounting for the care-partner influence and social cognitive challenges remain largely absent in the literature. Our proposed AAC intervention will be co-designed by our stakeholders and draws on a well-developed communication intervention for persons living with Parkinson’s Disease and their care-partners. We will engage seven dyads in a co-design workshop informed by focus group data and by our social network pilot data (n=5 dyads). The specific aims are to:

Aim 1: Develop and test the feasibility and acceptability of an intervention to promote AAC use with 15 dyads We propose to co-design an intervention using input from stakeholders as identified through the dyads’ social networks, and the existing science, to manualize an AAC device support intervention.

Aim 2: Test hypotheses that interventions targeted to dyadic self-efficacy and adaptation to social cognition impairments support the use of AAC for people with ALS and their care-partners and that these factors lead to better functional ability and overall well-being.