Economic and Social Research Council (ESRC) grant ES/V004964/1; Economic and Social Research Council  (ESRC) and National Institute for Health Research (NIHR) joint grant ES/L001853/2; Alzheimer’s Society, grant  number 348, AS-PR2-16-001; NIHR Applied Research Collaboration South-West Peninsula

Allan, L

Burns, A

Clare, L

Collins, R

Dawson, E

Gamble, L

Hillman, A

Hunt, A

Litherland, R

Martyr, A

Matthews, F

Parker, S

Pentecost, C

Quinn, C

Victor, C

Journal of Alzheimer s Disease

Alex Hillman

Cronfa at Swansea University

English

Impact of COVID-19 on ‘Living Well’ with Mild-to-Moderate Dementia in the Community: Findings from the IDEAL Cohort

Supplementary Material: https://content.iospress.com/download/journal-of-alzheimers-disease/jad215095?id=journal-of-alzheimers-disease/jad215095&supplementaryFilename=jad-85-jad215095-s001.pdfEconomic and Social Research Council (ESRC) grant ES/V004964/1; Economic and Social Research Council  (ESRC) and National Institute for Health Research (NIHR) joint grant ES/L001853/2; Alzheimer’s Society, grant  number 348, AS-PR2-16-001; NIHR Applied Research Collaboration South-West Peninsula

Brunel University Research Archive

Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort

Yes.
Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic.

Objective.
We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data.

Methods.
During the second wave of the pandemic we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible we benchmarked responses against pre-pandemic data.

Results.
Significant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to ‘live well’. Compared to pre-pandemic data there were lower levels of pain, depression and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighbourhood characteristics.

Conclusion.
Efforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalised planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic.‘Identifying and mitigating the individual and dyadic impact of COVID-19 and life under physical distancing on people with dementia and carers (INCLUDE)’ was funded by the Economic and Social Research Council (ESRC) through grant ES/V004964/1. Investigators: Clare, L., Victor, C., Matthews, F., Quinn, C., Hillman, A., Burns, A., Allan, L., Litherland, R., Martyr, A., Collins, R., & Pentecost, C. ESRC is part of UK Research and Innovation (UKRI).  ‘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) through grant 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, J. Thom. ESRC is part of UK Research and Innovation (UKRI). IDEAL data were deposited with the UK data archive in April 2020 and will be available to access from April 2023. Details of how the data can be accessed after that date can be found here: http://reshare.ukdataservice.ac.uk/854293/  ‘Improving the experience of Dementia and Enhancing Active Life: a longitudinal perspective on living well with dementia. The IDEAL-2 study’ is funded by 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, J. Rusted.   L. Clare acknowledges support from the NIHR Applied Research Collaboration South-West Peninsula.  The views expressed are those of the author(s) and not necessarily those of the ESRC, UKRI, NIHR, the Department of Health and Social Care, the National Health Service, or Alzheimer’s Society. The support of ESRC, NIHR and Alzheimer’s Society is gratefully acknowledged

Clare, L.

Martyr, A.

Gamble, L.D.

Pentecost, C.

Collins, R.

Dawson, E.

Hunt, A.

Parker, S.

Allan, L.

Burns, A.

Hillman, A.

Litherland, R.G.

Quinn, Catherine

Matthews, F.E.

Victor, C.

Bradford Scholars

Impact of COVID-19 on 'living well' with mild-to-moderate dementia in the community: findings from the IDEAL cohort

This is the author accepted manuscript. The final version is available from IOS Pres via the DOI in this recordData availability: IDEAL  data  were deposited with  the UK  data  archive  in April  2020  and  will be  available  to  access  from  April  2023.  Details  of ho w  the data  can  be  accessed after  that  date  can  be  found  here: http://reshare.ukdataservice.ac.uk/854293Background Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic.  Objective We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data.  Methods During the second wave of the pandemic we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible we benchmarked responses against pre-pandemic data.  Results Significant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to ‘live well’. Compared to pre-pandemic data there were lower levels of pain, depression and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighbourhood characteristics.  Conclusion Efforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social  contact  to  reduce  loneliness,  and  personalised  planning  to  reconnect  people with  their pre-COVID selves. Such efforts  may  build  on  the  resilience  demonstrated  by  people  with dementia  and  carers in coping with the pandemic.Economic and Social Research Council (ESRC)Alzheimer’s SocietyNational Institute for Health Research (NIHR

Gamble, LD

Matthews, FE

Open Research Exeter

http://bura.brunel.ac.uk/bitstream/2438/23549/3/FullText.pdf

Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort

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