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Deconditioning in people living with dementia during the COVID-19 pandemic: qualitative study from the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) process evaluation

Di Lorito, Claudio; Masud, Tahir; Gladman, John; Godfrey, Maureen; Dunlop, Marianne; Bosco, Alessandro; Harwood, Rowan

Deconditioning in people living with dementia during the COVID-19 pandemic: qualitative study from the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) process evaluation Thumbnail


Authors

Claudio Di Lorito

Tahir Masud

John Gladman

Maureen Godfrey

Marianne Dunlop

Alessandro Bosco



Contributors

Claudio Di Lorito
Work Package Leader

Tahir Masud
Project Member

John Gladman
Project Member

Maureen Godfrey
Other

Marianne Dunlop
Other

Alessandro Bosco
Researcher

Abstract

Background: Restrictions introduced in response to the COVID-19 pandemic led to increased risk of deconditioning in the general population. No empirical evidence of this effect however has been gathered in people living with dementia. This study aims to identify the causes and effects of COVID-19-related deconditioning in people living with dementia. Methods: This is a longitudinal phenomenological qualitative study. Participants living with dementia, their caregivers and therapists involved in the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) process evaluation during the COVID-19 pandemic were qualitatively interviewed at two time points: the baseline 2 months after the national lockdown was imposed in England (i.e., May 2020), the follow up 2 months after the first set (i.e. July 2020). The data were analysed through deductive thematic analysis. Results: Twenty-four participants living with dementia, 19 caregivers and 15 therapists took part in the study. Two themes were identified: Causes of deconditioning in people living with dementia during the COVID-19 pandemic and effects of deconditioning in people living with dementia during the COVID-19 pandemic. A self-reinforcing pattern was common, whereby lockdown made the person apathetic, demotivated, socially disengaged, and frailer. This reduced activity levels, which in turn reinforced the effects of deconditioning over time. Without external supporters, most participants lacked the motivation / cognitive abilities to keep active. Provided the proper infrastructure and support, some participants could use tele-rehabilitation to combat deconditioning. Conclusion: The added risks and effects of deconditioning on people with dementia require considerable efforts from policy makers and clinicians to ensure that they initiate and maintain physical activity in prolonged periods of social distancing. Delivering rehabilitation in the same way as before the pandemic might not be feasible or sustainable and innovative approaches must be found. Digital support for this population has shown promising results but remains a challenge. Trial registration: The PrAISED trial and process evaluation have received ethical approval number 18/YH/0059 from the Bradford/Leeds Ethics Committee. The ISRCTN Registration Number for PrAISED is15320670.

Journal Article Type Article
Acceptance Date Sep 2, 2021
Online Publication Date Oct 7, 2021
Publication Date Oct 7, 2021
Deposit Date Sep 2, 2021
Publicly Available Date Oct 12, 2021
Journal BMC Geriatrics
Electronic ISSN 1471-2318
Publisher Springer Science and Business Media LLC
Peer Reviewed Peer Reviewed
Volume 21
Article Number 529
Pages 1-10
DOI https://doi.org/10.1186/s12877-021-02451-z
Keywords Geriatrics and Gerontology
Public URL https://nottingham-repository.worktribe.com/output/6139732
Publisher URL https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-021-02451-z