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Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life

BACKGROUND: People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. We aimed to explore the challenges faced by family carers of people livi...

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Autores principales: Aker, Narin, West, Emily, Davies, Nathan, Moore, Kirsten J., Sampson, Elizabeth L., Nair, Pushpa, Kupeli, Nuriye
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8454696/
https://www.ncbi.nlm.nih.gov/pubmed/34548067
http://dx.doi.org/10.1186/s12913-021-07019-6
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author Aker, Narin
West, Emily
Davies, Nathan
Moore, Kirsten J.
Sampson, Elizabeth L.
Nair, Pushpa
Kupeli, Nuriye
author_facet Aker, Narin
West, Emily
Davies, Nathan
Moore, Kirsten J.
Sampson, Elizabeth L.
Nair, Pushpa
Kupeli, Nuriye
author_sort Aker, Narin
collection PubMed
description BACKGROUND: People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. We aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline. In particular, we focussed on key concerns and areas of decision making at the end of life. METHODS: We conducted a qualitative study using semi-structured interviews with eight telephone support line staff from two UK based charities who support carers of people living with dementia and those at the end of life. Interviews were conducted in the first wave of the pandemic in England in May–June 2020. RESULTS: An overarching theme of uncertainty and reactivity during a crisis was identified, and within this, five main themes were identified: concerns about care transitions, uncertainty in engaging support and help, pandemic-motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion. CONCLUSIONS: Family carers may be reluctant to seek support because of fear of what may happen to their relative, which may include hospitalisation and becoming ill with COVID-19, care home placement, or not being able to be with a relative at the end of life. In some cases, a lack of trust has developed, and instead carers are seeking support from alternative services they trust such as nationally known charities.This study was used to inform the development of a decision aid to support family carers making decisions about care for their relative with dementia during the pandemic, who the lack the capacity to make their own decisions.
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spelling pubmed-84546962021-09-22 Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life Aker, Narin West, Emily Davies, Nathan Moore, Kirsten J. Sampson, Elizabeth L. Nair, Pushpa Kupeli, Nuriye BMC Health Serv Res Research BACKGROUND: People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. We aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline. In particular, we focussed on key concerns and areas of decision making at the end of life. METHODS: We conducted a qualitative study using semi-structured interviews with eight telephone support line staff from two UK based charities who support carers of people living with dementia and those at the end of life. Interviews were conducted in the first wave of the pandemic in England in May–June 2020. RESULTS: An overarching theme of uncertainty and reactivity during a crisis was identified, and within this, five main themes were identified: concerns about care transitions, uncertainty in engaging support and help, pandemic-motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion. CONCLUSIONS: Family carers may be reluctant to seek support because of fear of what may happen to their relative, which may include hospitalisation and becoming ill with COVID-19, care home placement, or not being able to be with a relative at the end of life. In some cases, a lack of trust has developed, and instead carers are seeking support from alternative services they trust such as nationally known charities.This study was used to inform the development of a decision aid to support family carers making decisions about care for their relative with dementia during the pandemic, who the lack the capacity to make their own decisions. BioMed Central 2021-09-21 /pmc/articles/PMC8454696/ /pubmed/34548067 http://dx.doi.org/10.1186/s12913-021-07019-6 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Aker, Narin
West, Emily
Davies, Nathan
Moore, Kirsten J.
Sampson, Elizabeth L.
Nair, Pushpa
Kupeli, Nuriye
Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life
title Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life
title_full Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life
title_fullStr Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life
title_full_unstemmed Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life
title_short Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life
title_sort challenges faced during the covid-19 pandemic by family carers of people living with dementia towards the end of life
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8454696/
https://www.ncbi.nlm.nih.gov/pubmed/34548067
http://dx.doi.org/10.1186/s12913-021-07019-6
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