Experiences of apathy in people with Parkinson's disease: a qualitative exploration

Purpose: Research has suggested that people with Parkinson's disease (PD) can experience apathy. This study explored the lived experiences of apathy in people with PD. Method: Seven participants with Parkinson's disease who were also described as having apathy were interviewed and the data analysed using interpretative phenomenological analysis. Results: The findings were understood within three overlapping themes: (1) "The apathy creeps into jobs that I used to be able to do and no longer can do": Reduced motivation in response to the consequences of impairment; (2) "I hate at the end of the day if I've achieved nothing": The (un)acceptability of apathy; (3) "They say 'come on you lazy b*gger, get something done"': The social context of apathy. Conclusions: These themes are compared to wider research on apathy, PD and chronic illness. This study offers a view that, for some, apathy may be experienced as a number of behavioural choices influenced by increasing impairment and enacted in a social context. It presents an alternative conceptualisation from one describing apathy as the sole result of an endogenous disease process. As such, a number of therapeutic options are discussed but with the caveat that "apathy" need not always be the focus for intervention.