Understanding apathy in people with amyotrophic lateral sclerosis using motivational theories

Apathy—a reduction in goal-directed behaviour, cognition, and emotional responsiveness—is a highly prevalent, debilitating symptom in people with amyotrophic lateral sclerosis (pwALS). This study investigated the association between apathy in 69 pwALS and their 54 informal caregivers and constructs from social cognitive theory and self-determination theory. Participants also provided subjective accounts of apathy in semi-structured interviews. Multiple regression analysis demonstrated that constructs from both motivational theories were significant predictors of overall apathy scores and its sub-domains (executive, emotional, initiation), accounting for 32%–64% of the variance. Specifically, frustration of the basic psychological need for competence was a consistent and prominent predictor of greater apathy. Qualitative findings revealed that pwALS lack a clear awareness of apathy, often experiencing it as a manifestation of activities requiring increased physical and temporal effort. Future research should use psychosocial theories to understand apathy and develop interventions.