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

Gareth O'rourke; Claire Pentecost; Eleanor Van Den Heuvel; Christina Victor; Catherine Quinn; Alexandra Hillman; Rachael Litherland; Linda Clare

doi:10.1017/S0144686X21001719

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

Gareth O'rourke, Claire Pentecost^*, Eleanor Van Den Heuvel, Christina Victor, Catherine Quinn, Alexandra Hillman, Rachael Litherland, Linda Clare

^*Corresponding author for this work

Social Policy Research Unit

Research output: Contribution to journal › Article › peer-review

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 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.

Original language	English
Journal	Ageing and Society
DOIs	https://doi.org/10.1017/S0144686X21001719
Publication status	Published - 16 Nov 2021

Bibliographical note

© The Author(s), 2021.

Funding Information:
We would like to thank the people with lived experience of dementia who shared their personal experiences during a challenging time. We gratefully acknowledge the support and input of the ALWAYS (Action on Living Well: Asking You) group whose members have commented on early findings and provided valuable advice based on their personal experience, skills and expertise. We would like to acknowledge the funders of IDEAL and IDEAL-2. ‘Improving the experience of Dementia and Enhancing Active Life: living well with dementia. The IDEAL study’ was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR) (grant number ES/L001853/2; Investigators: L. Clare, I. R. Jones, C. Victor, J. V. Hindle, R. W. Jones, M. Knapp, M. Kopelman, R. Litherland, A. Martyr, F. E. Matthews, R. G. Morris, S. M. Nelis, J. A. Pickett, C. Quinn, J. Rusted and J. Thom). ESRC is part of UK Research and Innovation (UKRI). The IDEAL-2 study is funded by the Alzheimer's Society (grant number 348, AS-PR2-16-001; Investigators: L. Clare, I. R. Jones, C. Victor, C. Ballard, A. Hillman, J. V. Hindle, J. Hughes, R. W. Jones, M. Knapp, R. Litherland, A. Martyr, F. E. Matthews, R. G. Morris, S. M. Nelis, C. Quinn and J. Rusted). LC also acknowledges support from the NIHR Applied Research Collaboration South-West Peninsula. The views expressed are those of the authors and not necessarily those of the ESRC, UKRI, NIHR, the Department of Health and Social Care, the National Health Service or the Alzheimer's Society. The support of ESRC, NIHR and the Alzheimer's Society is gratefully acknowledged.

Funding Information:
IDEAL COVID-19 Dementia Initiative (IDEAL-CDI) was funded by the National Institute for Health Research (NIHR). The project team were: L. Clare, C. Victor, C. Quinn, A. Burns, T. Williamson, C. Todd, A. Hillman, R. Litherland, K. Oliver and C. Pentecost. 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). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

Publisher Copyright:
Copyright © The Author(s), 2021. Published by Cambridge University Press.

Keywords

carers
coping
COVID-19
dementia
interviews
living well
qualitative
social
support

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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
© The Author(s), 2021.
Final published version, 373 KBLicence: CC BY

Cite this

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

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 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. ",

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note = "{\textcopyright} The Author(s), 2021. Funding Information: We would like to thank the people with lived experience of dementia who shared their personal experiences during a challenging time. We gratefully acknowledge the support and input of the ALWAYS (Action on Living Well: Asking You) group whose members have commented on early findings and provided valuable advice based on their personal experience, skills and expertise. We would like to acknowledge the funders of IDEAL and IDEAL-2. {\textquoteleft}Improving the experience of Dementia and Enhancing Active Life: living well with dementia. The IDEAL study{\textquoteright} was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR) (grant number ES/L001853/2; Investigators: L. Clare, I. R. Jones, C. Victor, J. V. Hindle, R. W. Jones, M. Knapp, M. Kopelman, R. Litherland, A. Martyr, F. E. Matthews, R. G. Morris, S. M. Nelis, J. A. Pickett, C. Quinn, J. Rusted and J. Thom). ESRC is part of UK Research and Innovation (UKRI). The IDEAL-2 study is funded by the Alzheimer's Society (grant number 348, AS-PR2-16-001; Investigators: L. Clare, I. R. Jones, C. Victor, C. Ballard, A. Hillman, J. V. Hindle, J. Hughes, R. W. Jones, M. Knapp, R. Litherland, A. Martyr, F. E. Matthews, R. G. Morris, S. M. Nelis, C. Quinn and J. Rusted). LC also acknowledges support from the NIHR Applied Research Collaboration South-West Peninsula. The views expressed are those of the authors and not necessarily those of the ESRC, UKRI, NIHR, the Department of Health and Social Care, the National Health Service or the Alzheimer's Society. The support of ESRC, NIHR and the Alzheimer's Society is gratefully acknowledged. Funding Information: IDEAL COVID-19 Dementia Initiative (IDEAL-CDI) was funded by the National Institute for Health Research (NIHR). The project team were: L. Clare, C. Victor, C. Quinn, A. Burns, T. Williamson, C. Todd, A. Hillman, R. Litherland, K. Oliver and C. Pentecost. 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). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. Publisher Copyright: Copyright {\textcopyright} The Author(s), 2021. Published by Cambridge University Press.",

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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

Abstract

Bibliographical note

Keywords

Access to Document

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Cite this