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. 2021 Apr 20;21(1):762.
doi: 10.1186/s12889-021-10815-8.

The potential dangers of not understanding COVID-19 public health restrictions in dementia: "It's a groundhog day - every single day she does not understand why she can't go out for a walk"

Clarissa Giebel  1   2 , Kerry Hanna  3 , Manoj Rajagopal  4 , Aravind Komuravelli  5 , Jacqueline Cannon  6 , Justine Shenton  7 , Ruth Eley  8 , Anna Gaughan  9 , Steve Callaghan  10 , Hilary Tetlow  11 , Stan Limbert  12 , Rosie Whittington  13 , Carol Rogers  14 , Kym Ward  15 , Lisa Shaw  16 , Sarah Butchard  3   12 , Mark Gabbay  3   12
Affiliations

The potential dangers of not understanding COVID-19 public health restrictions in dementia: "It's a groundhog day - every single day she does not understand why she can't go out for a walk"

Clarissa Giebel et al. BMC Public Health. .

Abstract

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.

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Conflict of interest statement

N/a

Figures

Fig. 1
Fig. 1
Public health recommendations and tailoring for dementia. Legend. COVID-19 public health restrictions need to be tailored on three levels to benefit the person living with dementia and carers: (1) Individual level; (2) Service level; (3) Society level. Tailoring recommendations and supporting the implementation of recommendations on a service and society level underpin a more effective adherence to public health restrictions on an individual level. Grey highlighted text boxes highlight example recommendations on each of the three levels. PH – Public health; PLWD – People living with dementia
See this image and copyright information in PMC

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