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

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 empirically gathered in people living with dementia. Objective This study aims to identify the causes and effects of COVID-19-related deconditioning in people living with dementia. Design Longitudinal phenomenological qualitative study. Subjects Participants living with dementia, their carers and therapists involved in the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) process evaluation during the COVID-19 pandemic. Methods Qualitative interviews with participants were conducted remotely at two time points. The data were analysed through deductive thematic analysis. Results Twenty-four participants living with dementia, 19 carers and 15 therapists took part in the study. 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 still remains a challenge.