Data Access: 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: https://reshare.ukdataservice.ac.uk/854293/
INCLUDE data will be deposited with the UK data archive in June 2022 and will be available to access from June 2023.IDEAL study...TB

Allan, L

Bennett, HQ

Burns, A

Clare, L

Collins, R

Dawson, E

Gamble, LD

Hunt, A

Litherland, R

Martyr, A

Matthews, FE

Parker, S

Pentecost, C

Quinn, C

Sabatini, S

Victor, C

Journal of Alzheimer s Disease

Data Access: 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: https://reshare.ukdataservice.ac.uk/854293/
INCLUDE data will be deposited with the UK data archive in June 2022 and will be available to access from June 2023.‘Identifying and mitigating the individual and dyadic impact of COVID19 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: L. Clare, C. Victor, F.E. Matthews, C. Quinn, A. Hillman, A. Burns, L. Allan, R. Litherland, A. Martyr, R. Collins, & C. Pentecost. 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. ‘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; NIHR Applied Research Collaboration South-West Peninsula; Authors’ disclosures available online (https://www.j-alz.com/manuscript-disclosures/22-0221r1)

Brunel University Research Archive

A Comparison of Well-Being of Carers of People with Dementia and Their Ability to Manage Before and During the COVID-19 Pandemic: Findings from the IDEAL Study

Background: Social restriction measures imposed to curb the spread of COVID-19 in the United Kingdom impacted on carers of people with dementia, limiting access to support services and increasing perceived burden of caring. Few studies have compared data collected both during and before the pandemic to examine the effect of these changes. Objective: To explore whether the COVID-19 pandemic affected the well-being of carers of people with dementia living in the community, and their ability to cope with their caring responsibilities. Methods: Analysis was conducted on two groups of carers who were enrolled in the IDEAL programme; the 'pre-pandemic group' (n = 312), assessed at two time points prior to the pandemic, and the 'pandemic group', assessed prior to and several months into the pandemic (n = 156). For the pre-pandemic group, carers were matched 2:1 to carers in the pandemic group on certain characteristics. Differences in change over time between the two groups on self-reported well-being, quality of life, coping, perceived competence, and role captivity, were investigated using mixed effect modelling. Results: Compared to the pre-pandemic group, those in the pandemic group appeared to cope better and had more stable self-rated competency and role captivity. They did not differ in terms of well-being or quality of life. Conclusions: Despite reports of negative impacts on carers early in the pandemic, the findings suggest the pandemic had little negative longer-term impact on carers of people with dementia, and in fact they appeared to have a more positive attitude towards coping several months into the pandemic

Gamble, Laura D.

Parker, Sophie

Quinn, Catherine

Bennett, Holly Q.

Martyr, Anthony

Sabatini, Serena

Pentecost, Claire

Collins, Rachel

Dawson, Eleanor

Hunt, Anna

Allan, Louise

Burns, Alistair

Litherland, Rachael

Victor, Christina

Matthews, Fiona E.

Clare, Linda

Repository@Hull - Worktribe

English

This is the author accepted manuscript. The final version is available from IOS Press via the DOI in this recordBACKGROUND: Social restriction measures imposed to curb the spread of COVID-19 in the United Kingdom impacted on carers of people with dementia, limiting access to support services and increasing perceived burden of caring. Few studies have compared data collected both during and before the pandemic to examine the effect of these changes. OBJECTIVE: To explore whether the COVID-19 pandemic affected the well-being of carers of people with dementia living in the community, and their ability to cope with their caring responsibilities. METHODS: Analysis was conducted on two groups of carers who were enrolled in the IDEAL programme; the 'pre-pandemic group' (n = 312), assessed at two time points prior to the pandemic, and the 'pandemic group', assessed prior to and several months into the pandemic (n = 156). For the pre-pandemic group, carers were matched 2:1 to carers in the pandemic group on certain characteristics. Differences in change over time between the two groups on self-reported well-being, quality of life, coping, perceived competence, and role captivity, were investigated using mixed effect modelling. RESULTS: Compared to the pre-pandemic group, those in the pandemic group appeared to cope better and had more stable self-rated competency and role captivity. They did not differ in terms of well-being or quality of life. CONCLUSIONS: Despite reports of negative impacts on carers early in the pandemic, the findings suggest the pandemic had little negative longer-term impact on carers of people with dementia, and in fact they appeared to have a more positive attitude towards coping several months into the pandemic.Economic and Social Research Council (ESRC)National Institute for Health Research (NIHR)Alzheimer’s Societ

Open Research Exeter

YesSocial restriction measures imposed to curb the spread of COVID-19 in the United Kingdom impacted on
carers of people with dementia, limiting access to support services and increasing perceived burden of caring. Few studies
have compared data collected both during and before the pandemic to examine the effect of these changes.
 To explore whether the COVID-19 pandemic affected the well-being of carers of people with dementia living in
the community, and their ability to cope with their caring responsibilities.
Methods: Analysis was conducted on two groups of carers who were enrolled in the IDEAL programme; the ‘pre-pandemic
group’ (n = 312), assessed at two time points prior to the pandemic, and the ‘pandemic group’, assessed prior to and several
months into the pandemic (n = 156). For the pre-pandemic group, carers were matched 2:1 to carers in the pandemic group
on certain characteristics. Differences in change over time between the two groups on self-reported well-being, quality of
life, coping, perceived competence, and role captivity, were investigated using mixed effect modelling.
Results: Compared to the pre-pandemic group, those in the pandemic group appeared to cope better and had more stable
self-rated competency and role captivity. They did not differ in terms of well-being or quality of life.
Conclusion: Despite reports of negative impacts on carers early in the pandemic, the findings suggest the pandemic had little
negative longer-term impact on carers of people with dementia, and in fact they appeared to have a more positive attitude
towards coping several months into the pandemic.We acknowledge the support of NIHR Dementias and Neurodegeneration Specialty (DeNDRoN) and Health and Care Research Wales with IDEAL cohort recruitment and data collection. We gratefully acknowledge the local principal investigators and researchers involved in participant recruitment and assessment within these networks. We are grateful to the IDEAL study participants for their participation in the IDEAL and INCLUDE studies, to the wider group of IDEAL programme researchers, and to members of the ALWAYs group and the Project Advisory Group for their support. ‘Identifying and mitigating the individual and dyadic impact of COVID19 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: L. Clare, C. Victor, F.E. Matthews, C. Quinn, A. Hillman, A. Burns, L. Allan, R. Litherland, A. Martyr, R. Collins, & C. Pentecost. 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. ‘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 and L. Allan acknowledge support from the NIHR Applied Research Collaboration SouthWest Peninsula. This report is independent research supported by the National Institute for Health and Care Research Applied Research Collaboration South West Peninsula. The views expressed in this publication 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. Authors’ disclosures available online (https:// www.j-alz.com/manuscript-disclosures/22-0221r1)

Gamble, L.D.

Parker, S.

Bennett, H.Q.

Martyr, A.

Sabatini, S.

Pentecost, C.

Collins, R.

Dawson, E.

Hunt, A.

Allan, L.

Burns, A.

Litherland, R.

Victor, C.

Matthews, F.E.

Clare, L.

Bradford Scholars

A comparison of well-being of carers of people with dementia and their ability to manage before and during the COVID-19 pandemic: findings from the IDEAL study

https://bradscholars.brad.ac.uk/bitstream/10454/19115/7/Quinn_C_2022_Accepted_Version.pdf

A Comparison of Well-Being of Carers of People with Dementia and Their Ability to Manage Before and During the COVID-19 Pandemic: Findings from the IDEAL Study

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