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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

Lookup NU author(s): Dr Laura Gamble, Dr Holly Bennett, Professor Fiona MatthewsORCiD

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This is the authors' accepted manuscript of an article that has been published in its final definitive form by IOS Press, 2022.

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Abstract

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. 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.

Publication metadata

Author(s): Gamble LD, Parker S, Quinn C, Bennett HQ, Martyr A, Sabatini S, Pentecost C, Collins R, Dawson E, Hunt A, Allan L, Burns A, Litherland R, Victor C, Matthews FE, Clare L

Publication type: Article

Publication status: Published

Journal: Journal of Alzheimer's Disease

Year: 2022

Volume: 88

Issue: 2

Pages: 679-692

Print publication date: 19/07/2022

Online publication date: 23/05/2022

Acceptance date: 06/05/2022

Date deposited: 23/05/2022

ISSN (print): 1387-2877

ISSN (electronic): 1875-8908

Publisher: IOS Press

URL: https://doi.org/10.3233/JAD-220221

DOI: 10.3233/JAD-220221

ePrints DOI: 10.57711/2ywx-q869

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