Apathy is one of the most common non-motor symptoms in people with amyotrophic lateral sclerosis (ALS). It is a motivational disorder characterized by reduced goal-directed behaviour, cognitive activity, and emotional responsiveness, and is associated with lower quality of life, greater caregiver burden, and worse clinical outcomes. The aim of this master’s thesis was to explore the lived experience of apathy in individuals with ALS. Quantitative data on apathy, cognition, depression, and functional status were collected using validated measures. Nine semi-structured interviews were conducted in participants’ homes to explore how participants made sense of their experiences of apathy, how it manifested in their everyday lives and interpersonal relationships, and what coping strategies they developed in response to changes in motivation. The interview transcripts were analysed using interpretative phenomenological analysis. Four group experiential themes were identified: Loss of Self and Exclusion from the World of Others, Diminished Reward Relative to Effort, Feeling Like a Burden, and What Sustains Motivation. The findings contribute to a deeper understanding of the lived experience of apathy in people with ALS and highlight the importance of a biopsychosocial approach that considers not only neurobiological mechanisms but also the psychological and social dimensions of the individual’s experience in understanding and addressing apathy.
|
