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Living with dementia under COVID-19 restrictions: coping and support needs among people with dementia and carers from the IDEAL cohort

Gareth O'Rourke Orcid Logo, Claire Pentecost Orcid Logo, Eleanor van den Heuvel Orcid Logo, Christina Victor Orcid Logo, Catherine Quinn Orcid Logo, Alexandra Hillman Orcid Logo, Rachael Litherland, Linda Clare Orcid Logo

Ageing and Society, Volume: 43, Issue: 10, Pages: 2424 - 2446

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DOI (Published version): 10.1017/s0144686x21001719

Abstract

Stringent social restrictions imposed during 2020 to counter the spread of the COVID-19 pandemic could significantly affect the wellbeing and quality of life of people with dementia living in the community and their family carers. We explored the impact of COVID-19 restrictions on people with dement...

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Published in: Ageing and Society
ISSN: 0144-686X 1469-1779
Published: Cambridge University Press (CUP) 2023
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URI: https://cronfa.swan.ac.uk/Record/cronfa60477
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first_indexed 2022-08-02T14:17:13Z
last_indexed 2023-04-19T03:19:36Z
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spelling v2 60477 2022-07-13 Living with dementia under COVID-19 restrictions: coping and support needs among people with dementia and carers from the IDEAL cohort 2022-07-13 Stringent social restrictions imposed during 2020 to counter the spread of the COVID-19 pandemic could significantly affect the wellbeing and quality of life of people with dementia living in the community and their family carers. We explored the impact of COVID-19 restrictions on people with dementia and family carers in England and considered how negative effects might be mitigated. We conducted semi-structured telephone interviews with 11 people with dementia and 11 family carers who were ongoing participants in the IDEAL cohort during the initial ‘lockdown’ period in May and June 2020, and follow-up interviews with five people with dementia and two carers as restrictions were eased in July. We analysed interview data and triangulated the findings with issues raised in dementia-specific online forums. Findings showed some people with dementia were coping well, but others experienced a range of negative impacts, with varying degrees of improvement as restrictions were eased. The need for clear personalised information relating to COVID-19 and the value of support in the form of regular ‘just checking’ phone calls was emphasised. This exceptional situation provides a natural demonstration of how social and psychological resources shape the potential to ‘live well’ with dementia. While some support is recommended for all, a personalised approach to determine needs and coping ability would ensure that further practical and emotional support is targeted effectively. Journal Article Ageing and Society 43 10 2424 2446 Cambridge University Press (CUP) 0144-686X 1469-1779 Dementia, carers, COVID-19, qualitative, interview, living well, social, coping, support 1 10 2023 2023-10-01 10.1017/s0144686x21001719 http://dx.doi.org/10.1017/s0144686x21001719 COLLEGE NANME COLLEGE CODE Swansea University This report presents independent research funded by the NIHR Policy Research Unit in Older People and Frailty (Policy Research Unit Programme reference number PR-PRU-1217-21502). 2023-11-08T16:39:12.6893114 2022-07-13T11:13:36.7915378 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Public Health Gareth O'Rourke 0000-0001-7615-8849 1 Claire Pentecost 0000-0003-2048-5538 2 Eleanor van den Heuvel 0000-0003-3603-2576 3 Christina Victor 0000-0002-4213-3974 4 Catherine Quinn 0000-0001-9553-853x 5 Alexandra Hillman 0000-0003-1859-1075 6 Rachael Litherland 7 Linda Clare 0000-0003-3989-5318 8 60477__24812__2fd8702d1a2d449dac3e05ce3e1b2507.pdf 60477.pdf 2022-08-02T15:17:35.7891979 Output 364952 application/pdf Version of Record true © The Author(s), 2021. Distributed under the terms of a Creative Commons Attribution 4.0 License (CC BY 4.0). true eng http://creativecommons.org/licenses/by/4.0/
title Living with dementia under COVID-19 restrictions: coping and support needs among people with dementia and carers from the IDEAL cohort
spellingShingle Living with dementia under COVID-19 restrictions: coping and support needs among people with dementia and carers from the IDEAL cohort
,
title_short Living with dementia under COVID-19 restrictions: coping and support needs among people with dementia and carers from the IDEAL cohort
title_full Living with dementia under COVID-19 restrictions: coping and support needs among people with dementia and carers from the IDEAL cohort
title_fullStr Living with dementia under COVID-19 restrictions: coping and support needs among people with dementia and carers from the IDEAL cohort
title_full_unstemmed Living with dementia under COVID-19 restrictions: coping and support needs among people with dementia and carers from the IDEAL cohort
title_sort Living with dementia under COVID-19 restrictions: coping and support needs among people with dementia and carers from the IDEAL cohort
author ,
author2 Gareth O'Rourke
Claire Pentecost
Eleanor van den Heuvel
Christina Victor
Catherine Quinn
Alexandra Hillman
Rachael Litherland
Linda Clare
format Journal article
container_title Ageing and Society
container_volume 43
container_issue 10
container_start_page 2424
publishDate 2023
institution Swansea University
issn 0144-686X
1469-1779
doi_str_mv 10.1017/s0144686x21001719
publisher Cambridge University Press (CUP)
college_str Faculty of Medicine, Health and Life Sciences
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hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Health and Social Care - Public Health{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Public Health
url http://dx.doi.org/10.1017/s0144686x21001719
document_store_str 1
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description Stringent social restrictions imposed during 2020 to counter the spread of the COVID-19 pandemic could significantly affect the wellbeing and quality of life of people with dementia living in the community and their family carers. We explored the impact of COVID-19 restrictions on people with dementia and family carers in England and considered how negative effects might be mitigated. We conducted semi-structured telephone interviews with 11 people with dementia and 11 family carers who were ongoing participants in the IDEAL cohort during the initial ‘lockdown’ period in May and June 2020, and follow-up interviews with five people with dementia and two carers as restrictions were eased in July. We analysed interview data and triangulated the findings with issues raised in dementia-specific online forums. Findings showed some people with dementia were coping well, but others experienced a range of negative impacts, with varying degrees of improvement as restrictions were eased. The need for clear personalised information relating to COVID-19 and the value of support in the form of regular ‘just checking’ phone calls was emphasised. This exceptional situation provides a natural demonstration of how social and psychological resources shape the potential to ‘live well’ with dementia. While some support is recommended for all, a personalised approach to determine needs and coping ability would ensure that further practical and emotional support is targeted effectively.
published_date 2023-10-01T16:39:16Z
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