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

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 is 15320670 .

SciScore for 10.1101/2020.11.16.20231100: (What is this?)

Please note, not all rigor criteria are appropriate for all manuscripts.

Table 1: Rigor

Institutional Review Board Statement	Consent: Prior to the interview session, CDL mailed (or emailed) a copy of the information sheet and consent form.
Randomization	not detected.
Blinding	not detected.
Power Analysis	not detected.
Sex as a biological variable	not detected.

Table 2: Resources

No key resources detected.

Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).

Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:

This study is characterised by certain strengths and limitations. It investigated the phenomenon of deconditioning in real time through a rigorous empirical methodology. Further, it collected data at two time points, to monitor progress of deconditioning over time. It presented a timely contribution to current discourse around the phenomenon of deconditioning by presenting the views of people with lived experience of dementia and their caregivers, promoting representation of their perspectives in research [18]. Further, it introduced the views of service providers too, to add a clinical perspective dimension to the data. Because the study was embedded in an existing trial, its sample of participants might not reflect the wider population of people living with dementia. However, the intention of this study was only to report a real time snapshot of the phenomenon in a specific context, to raise awareness and contribute empirical evidence to the existing discourse on the challenges of people living with dementia during the COVID-19 pandemic [19]. Looking forward, this study warrants important reflections for clinical practice and policy. The Physiological Society and Centre for Ageing Better presented recommendations from leading scientists and clinicians in the fields of physiology, nutrition and physiotherapy [2] on how to support older people to remain active and healthy through the pandemic. While the problems identified in this paper have been recognised in the report, the...

Results from TrialIdentifier: No clinical trial numbers were referenced.

Results from Barzooka: We did not find any issues relating to the usage of bar graphs.

Results from JetFighter: We did not find any issues relating to colormaps.

Results from rtransparent:

Thank you for including a conflict of interest statement. Authors are encouraged to include this statement when submitting to a journal.
Thank you for including a funding statement. Authors are encouraged to include this statement when submitting to a journal.
No protocol registration statement was detected.

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