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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...
Autores principales: | , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2021
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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. |
format | Online Article Text |
id | pubmed-8296153 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
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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