“He Just Doesn’t Want to Get Out of the Chair and Do It”: The Impact of Apathy in People with Dementia on Their Carers

Chern Yi Marybeth Chang, Waqaar Baber, Tom Dening and Jennifer Yates
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Chern Yi Marybeth Chang: Clinical Neurosciences and Mental Health, School of Medicine, University of Nottingham, Nothingham NG7 2UH, UK
Waqaar Baber: The National Hospital for Neurology and Neurosurgery, University College London Hospitals NHS Foundation Trust, London WC1N 3BG, UK
Tom Dening: Clinical Neurosciences and Mental Health, School of Medicine, University of Nottingham, Nothingham NG7 2UH, UK
Jennifer Yates: Clinical Neurosciences and Mental Health, School of Medicine, University of Nottingham, Nothingham NG7 2UH, UK

IJERPH, 2021, vol. 18, issue 12, 1-14

Abstract: Apathy, defined as a lack of motivation, is a prevalent and persistent behavioural and psychological symptom of dementia. Limited research suggests that apathy is associated with increased carer burden, but there are no studies investigating carers’ subjective experiences of apathy. This study aimed to fill this gap and explore the lived experience of apathy in dementia from the perspectives of the people with dementia and their carers. This article reports on the carers’ perspectives. Six dyads of people with dementia and carers participated in semi-structured interviews, which were analysed using interpretative phenomenological analysis. Three superordinate themes were identified: (1) achieving a balance of conflicting emotions—the challenges of apathy led to feelings of guilt, acceptance, and frustration; (2) new roles imposed by caring, which involved taking on new responsibilities and promoting remaining interests of person with dementia; and (3) having a life of one’s own—coping with apathy by talking to others, and spending time away from the caring role. This study highlighted that carers are caught in a struggle between wanting to involve the person with dementia in decisions and finding that they cannot if they want to overcome the hurdle of apathy. Implications of this study suggest that a wider understanding of apathy at a societal level could lead to the provision of a helpful forum for carers to share their experiences.

Keywords: dementia; carers; apathy; motivation; activities; relationships; qualitative; burden (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2021
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