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Informal dementia care: The carer’s lived experience at the divides between policy and practice
Support for informal dementia care at a local community level is not working for most carers today. Carers looking after a person with dementia have long lamented the absence of an empowered named support and an effectively actioned care plan. Drawing on literary writing and social research, we argu...
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
SAGE Publications
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9483676/ https://www.ncbi.nlm.nih.gov/pubmed/35838118 http://dx.doi.org/10.1177/14713012221112234 |
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author | Britton, Anthony Zimmermann, Martina |
author_facet | Britton, Anthony Zimmermann, Martina |
author_sort | Britton, Anthony |
collection | PubMed |
description | Support for informal dementia care at a local community level is not working for most carers today. Carers looking after a person with dementia have long lamented the absence of an empowered named support and an effectively actioned care plan. Drawing on literary writing and social research, we argue in this article that these challenges have existed since dementia emerged as a major condition in the West during the 1980s. Based on this historical context, we ask: Why has this issue persisted over the last four decades? How have healthcare politics and policy initiatives responded to these requests? And what can we learn from this for the current, COVID-19 exacerbated crisis of care? This article focuses on the English context, to discuss these ongoing challenges in the light of a series of policy papers, and to ask what is hampering the implementation of such policy initiatives. In England, local authorities are responsible for dementia support. This article focuses on the situation in a county in the Midlands where one of us (AB) has been lobbying local government for over a decade. The discussion contextualises the lived experience of dementia care within the situation exacerbated by the COVID-19 pandemic, ensuing politics of crises and persistent emphasis on cure over care. We find that the absence on two points centrally challenges care: a joined-up approach between health and social care and adequate information on available care support services, accessible through an empowered named contact. To enhance the lived experience of dementia care, consistent provision of individual named support and professional care support, as and when required, should become essential to local implementation of the care policy. |
format | Online Article Text |
id | pubmed-9483676 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
spelling | pubmed-94836762022-09-20 Informal dementia care: The carer’s lived experience at the divides between policy and practice Britton, Anthony Zimmermann, Martina Dementia (London) Articles Support for informal dementia care at a local community level is not working for most carers today. Carers looking after a person with dementia have long lamented the absence of an empowered named support and an effectively actioned care plan. Drawing on literary writing and social research, we argue in this article that these challenges have existed since dementia emerged as a major condition in the West during the 1980s. Based on this historical context, we ask: Why has this issue persisted over the last four decades? How have healthcare politics and policy initiatives responded to these requests? And what can we learn from this for the current, COVID-19 exacerbated crisis of care? This article focuses on the English context, to discuss these ongoing challenges in the light of a series of policy papers, and to ask what is hampering the implementation of such policy initiatives. In England, local authorities are responsible for dementia support. This article focuses on the situation in a county in the Midlands where one of us (AB) has been lobbying local government for over a decade. The discussion contextualises the lived experience of dementia care within the situation exacerbated by the COVID-19 pandemic, ensuing politics of crises and persistent emphasis on cure over care. We find that the absence on two points centrally challenges care: a joined-up approach between health and social care and adequate information on available care support services, accessible through an empowered named contact. To enhance the lived experience of dementia care, consistent provision of individual named support and professional care support, as and when required, should become essential to local implementation of the care policy. SAGE Publications 2022-07-15 2022-10 /pmc/articles/PMC9483676/ /pubmed/35838118 http://dx.doi.org/10.1177/14713012221112234 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage). |
spellingShingle | Articles Britton, Anthony Zimmermann, Martina Informal dementia care: The carer’s lived experience at the divides between policy and practice |
title | Informal dementia care: The carer’s lived experience at the divides between
policy and practice |
title_full | Informal dementia care: The carer’s lived experience at the divides between
policy and practice |
title_fullStr | Informal dementia care: The carer’s lived experience at the divides between
policy and practice |
title_full_unstemmed | Informal dementia care: The carer’s lived experience at the divides between
policy and practice |
title_short | Informal dementia care: The carer’s lived experience at the divides between
policy and practice |
title_sort | informal dementia care: the carer’s lived experience at the divides between
policy and practice |
topic | Articles |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9483676/ https://www.ncbi.nlm.nih.gov/pubmed/35838118 http://dx.doi.org/10.1177/14713012221112234 |
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