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

Abstract

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.

Implications for Rehabilitation

• Apathy is a term used to denote a decrease in motivation and, although widely used, lacks conceptual clarity. Therefore the personal meaning of the behaviour for the individual within the context of their illness must be considered on assessment.

• Apathy is a societal as well as personal issue and the therapist also needs to assess the meaning and implications of the behaviour in the individual’s social context.

• Practitioners need to be aware that apathy need not always be a focus for intervention. Discussion around the meaning of the behaviour may be all which is needed.

• Where individuals do wish to change their behaviours, a number of behavioural and psychological approaches are available. “Third wave” psychological therapies such as compassion- and acceptance-based approaches seem useful although none currently have any evidence base specifically with people with Parkinson’s disease.

• Apathy
• Parkinson’s disease
• phenomenology
• psychological

Acknowledgements

The authors wish to thank the two anonymous reviewers for their helpful comments on earlier drafts of this paper, Sarah Heard for her editorial assistance and Professor Carol Thomas for inspiring much of the thinking behind this study.

Declaration of interest

The authors report no declarations of interest.