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“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

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...

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Detalles Bibliográficos
Autores principales: Chang, Chern Yi Marybeth, Baber, Waqaar, Dening, Tom, Yates, Jennifer
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8296153/
https://www.ncbi.nlm.nih.gov/pubmed/34207955
http://dx.doi.org/10.3390/ijerph18126317
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author Chang, Chern Yi Marybeth
Baber, Waqaar
Dening, Tom
Yates, Jennifer
author_facet Chang, Chern Yi Marybeth
Baber, Waqaar
Dening, Tom
Yates, Jennifer
author_sort Chang, Chern Yi Marybeth
collection PubMed
description 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.
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spelling pubmed-82961532021-07-23 “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 Int J Environ Res Public Health Article 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. MDPI 2021-06-11 /pmc/articles/PMC8296153/ /pubmed/34207955 http://dx.doi.org/10.3390/ijerph18126317 Text en © 2021 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Chang, Chern Yi Marybeth
Baber, Waqaar
Dening, Tom
Yates, Jennifer
“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
title “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
title_full “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
title_fullStr “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
title_full_unstemmed “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
title_short “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
title_sort “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
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8296153/
https://www.ncbi.nlm.nih.gov/pubmed/34207955
http://dx.doi.org/10.3390/ijerph18126317
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