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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
Gamble, L.D. Parker, S. Bennett, H.Q. Martyr, A. Sabatini, S. Pentecost, C. Collins, R. Dawson, E. Hunt, A.
Gamble, L.D.
Parker, S.
Bennett, H.Q.
Martyr, A.
Sabatini, S.
Pentecost, C.
Collins, R.
Dawson, E.
Hunt, A.
Publication Date
2022
End of Embargo
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© 2022 IOS Press. Reproduced in accordance with the publisher's self-archiving policy.
The final publication is available at IOS Press through https://doi.org/10.3233/JAD-220221.
Peer-Reviewed
Yes
Open Access status
openAccess
Accepted for publication
2022-05-06
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Department
Awarded
Embargo end date
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Additional title
Abstract
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.
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.
Version
Accepted version
Citation
Gamble LD, Parker S, Quinn C et al (2022) 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. Journal of Alzheimer's Disease. 88(2): 679-692.
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Article