Social Connectedness in People with Amyotrophic Lateral Sclerosis: The Impact of Dysarthria, Immobility, and Psychosocial Factors

PROJECT SUMMARY People living with amyotrophic lateral sclerosis (ALS) are at high risk for social disconnection (such as isolation and loneliness) as their impairments progressively limit critical functions such as speaking and walking. Despite being critically important to health and quality of life, the social connectedness of individuals with progressive motor speech impairments has been underappreciated and understudied. Consequently, patients suffering from social disconnection are vastly underserved, resulting in underdeveloped best practices for assessing and remediating social isolation and loneliness in ALS. The overarching objectives of this research are to identify the root causes of social disconnection in persons with speech-motor deficits due to ALS, and to use this information to develop targeted strategies to enhance social connectedness and mitigate the isolating impact of these speech disorders. To achieve these goals, we plan to conduct a longitudinal study involving a cohort of 200 ALS patients over a span of six months. This study will employ an innovative mobile health approach, leveraging the widespread ownership of smartphones and the availability of existing mobile technologies designed for medical research. Participants will use their own smartphone to acquire actively (surveys and speech recordings) and passively (GPS) generated data. This remote approach is uniquely suited to the research questions and to people with ALS, given that it is convenient and minimally invasive, thereby facilitating frequent data collection and addressing barriers to access. Furthermore, we employ a novel social network mapping approach, along with self-reported perceptions of loneliness, to quantify social connectedness. We use these approaches to determine the effects of ALS severity on social connectedness (Aim 1), and to determine the contribution of declining speech and mobility function due to ALS to communicative participation, community mobility, and social connectedness (Aim 2). Additionally, we seek to identify psychosocial risk and protective factors of communicative participation, community mobility, and social connectedness (Aim 3). The knowledge gained from these studies is critically needed to (1) help patients, families, and service providers make informed decisions regarding social and communication management priorities and (2) develop more targeted assessments and interventions designed to mitigate the negative effects of social disconnection in persons with progressive neurologic diseases that affect speech.