The Experience of Apathy in Dementia: A Qualitative Study

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

Abstract

We aimed to explore and gain an understanding into how people with dementia experience apathy, and consequently suggest effective interventions to help them and their carers. Twelve participants (6 dyads of 6 people with dementia and their family carers) were recruited from “memory cafes” (meeting groups for people with dementia and their families), social groups, seminars, and patient and public involvement (PPI) meetings. People with dementia and their carers were interviewed separately and simultaneously. Quantitative data were collected using validated scales for apathy, cognition, anxiety, and depression. The interviews were semi-structured, focusing on the subjective interpretation of apathy and impacts on behaviour, habits, hobbies, relationships, mood, and activities of daily living. Interviews were recorded and transcribed. Transcripts were analysed using interpretative phenomenological analysis (IPA), which generated codes and patterns that were collated into themes. Four major themes were identified, three of which highlighted the challenging aspects of apathy. One described the positive aspects of the individuals’ efforts to overcome apathy and remain connected with the world and people around them. This study is the first to illustrate the subjective experience of apathy in dementia, portraying it as a more complex and active phenomenon than previously assumed. Apathy and its effects warrant more attention from clinicians, researchers, and others involved in dementia care.

Citation

Baber, W., Chang, C. Y. M., Yates, J., & Dening, T. (2021). The Experience of Apathy in Dementia: A Qualitative Study. International Journal of Environmental Research and Public Health, 18(6), Article 3325. https://doi.org/10.3390/ijerph18063325

• Journal Article Type: Article
• Acceptance Date: Mar 20, 2021
• Online Publication Date: Mar 23, 2021
• Publication Date: Mar 23, 2021
• Deposit Date: Mar 24, 2021
• Publicly Available Date: Mar 24, 2021
• Journal: International Journal of Environmental Research and Public Health
• Print ISSN: 1661-7827
• Publisher: MDPI
• Peer Reviewed: Peer Reviewed
• Volume: 18
• Issue: 6
• Article Number: 3325
• DOI: https://doi.org/10.3390/ijerph18063325
• Keywords: dementia; carers; apathy; motivation; activities; relationships; qualitative; burden
• Public URL: https://nottingham-repository.worktribe.com/output/5413335
• Publisher URL: https://www.mdpi.com/1660-4601/18/6/3325