“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

Chang, Chern Yi Marybeth; Baber, Waqaar; Dening, Tom; Yates, Jennifer

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.

Citation

Chang, C. Y. M., Baber, W., Dening, T., & Yates, J. (2021). “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. International Journal of Environmental Research and Public Health, 18(12), 6317. https://doi.org/10.3390/ijerph18126317

• Journal Article Type: Article
• Acceptance Date: Jun 7, 2021
• Online Publication Date: Jun 11, 2021
• Publication Date: Jun 2, 2021
• Deposit Date: Jun 14, 2021
• Publicly Available Date: Jun 14, 2021
• Journal: International Journal of Environmental Research and Public Health
• Print ISSN: 1661-7827
• Electronic ISSN: 1660-4601
• Publisher: MDPI
• Peer Reviewed: Peer Reviewed
• Volume: 18
• Issue: 12
• Pages: 6317
• DOI: https://doi.org/10.3390/ijerph18126317
• Public URL: https://nottingham-repository.worktribe.com/output/5671126
• Publisher URL: https://www.mdpi.com/1660-4601/18/12/6317/xml