BACKGROUND: Sudden 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).
METHODS: Unpaid 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 . FINDINGS: A 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 .
DISCUSSION: In 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.