The potential dangers of not understanding COVID-19 public health restrictions in dementia: \u201cIt\u2019s a groundhog day \u2013 every single day she does not understand why she can\u2019t go out for a walk\u201d

Clarissa Giebel,Sarah Butchard,Jacqueline Cannon,Steve Callaghan,Anna Gaughan,Rosie Whittington,Carol Rogers,Mark Gabbay,Ruth Eley,Kym Ward,Justine Shenton,Kerry Hanna,Hilary Tetlow,Lisa Shaw,Manoj Rajagopal,Stan Limbert,Aravind Komuravelli

doi:10.1186/s12889-021-10815-8

Abstract

BackgroundSudden public health restrictions can be difficult to comprehend for people with cognitive deficits. However, these are even more important for them to adhere to due to their increased levels of vulnerability, particularly to COVID-19. With a lack of previous evidence, we explored the understanding and changes in adherence to COVID-19 public health restrictions over time in people living with dementia (PLWD).MethodsUnpaid carers and PLWD were interviewed over the phone in April 2020, shortly after the nationwide UK lockdown, with a proportion followed up from 24th June to 10th July. Participants were recruited via social care and third sector organisations across the UK, and via social media.FindingsA total of 70 interviews (50 baseline, 20 follow-up) were completed with unpaid carers and PLWD. Five themes emerged: Confusion and limited comprehension; Frustration and burden; Putting oneself in danger; Adherence to restrictions in wider society; (Un) changed perceptions. Most carers reported limited to no understanding of the public health measures in PLWD, causing distress and frustration for both the carer and the PLWD. Due to the lack of understanding, some PLWD put themselves in dangerous situations without adhering to the restrictions. PLWD with cognitive capacity who participated understood the measures and adhered to these.DiscussionIn light of the new second wave of the pandemic, public health measures need to be simpler for PLWD to avoid unwilful non-adherence. Society also needs to be more adaptive to the needs of people with cognitive disabilities more widely, as blanket rules cause distress to the lives of those affected by dementia.

Highlights

Sudden public health restrictions can be difficult to comprehend for people with cognitive deficits
With over 50 million people living with dementia worldwide [1], it was expected for the COVID-19 pandemic to have a particular impact on the lives of people living with dementia (PWLD) and their carers [2]
A total of 50 unpaid carers (n = 42) and people living with dementia (PLWD) (n = 8) participated in the baseline interviews, with 20 unpaid carers (n = 16) and PLWD (n = 4) completing a followup interview 3–4 months later

Summary

Introduction

Sudden public health restrictions can be difficult to comprehend for people with cognitive deficits. Vulnerable people were still shielding until early August, which meant that older adults and those with underlying health conditions were suggested to not leave the house and avoid any social contact, including in supermarkets This meant that some people were allowed to go outside and others were told to stay at home at all times if possible. In the majority of dementia subtypes, including Alzheimer’s disease dementia and Lewy Body dementia, retaining new information is severely impacted [7, 8] This ability deteriorates further as the dementia progresses, so that people in the moderate and more advanced stages are likely to struggle to a much greater extent to understand the public health restrictions and retain their nuanced and changing nature

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