Clarissa Giebel1,2, Kerry Hanna3, Manoj Rajagopal4, Aravind Komuravelli5, Jacqueline Cannon6, Justine Shenton7, Ruth Eley8, Anna Gaughan9, Steve Callaghan10, Hilary Tetlow11, Stan Limbert12, Rosie Whittington13, Carol Rogers14, Kym Ward15, Lisa Shaw16, Sarah Butchard3,12, Mark Gabbay3,12. 1. Department of Primary Care & Mental Health, University of Liverpool, Brownlow Street, Liverpool, L69 3GL, UK. Clarissa.giebel@liverpool.ac.uk. 2. NIHR ARC NWC, Liverpool, UK. Clarissa.giebel@liverpool.ac.uk. 3. Department of Primary Care & Mental Health, University of Liverpool, Brownlow Street, Liverpool, L69 3GL, UK. 4. Lancashire and South Cumbria NHS Trust, Preston, UK. 5. North West Boroughs NHS Trust, Warrington, UK. 6. Lewy Body Society, Wigan, UK. 7. Sefton Older People's Forum, Liverpool, UK. 8. Liverpool Dementia Action Alliance, Liverpool, UK. 9. Together In Dementia Everyday (TIDE), Liverpool, UK. 10. EQE Health, Liverpool, UK. 11. SURF Liverpool, Liverpool, UK. 12. NIHR ARC NWC, Liverpool, UK. 13. Me2U Day Care Centre, Liverpool, UK. 14. National Museums Liverpool, Liverpool, UK. 15. The Brain Charity, Liverpool, UK. 16. Department of Modern Languages and Cultures, University of Liverpool, Liverpool, UK.
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.
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.
Authors: Cheryl L Stopford; Jennifer C Thompson; David Neary; Anna M T Richardson; Julie S Snowden Journal: Cortex Date: 2010-12-21 Impact factor: 4.027
Authors: Caroline L Sutcliffe; Clarissa M Giebel; David Jolley; David J Challis Journal: Int J Geriatr Psychiatry Date: 2015-05-11 Impact factor: 3.485
Authors: Nora E Fritz; Deborah A Kegelmeyer; Anne D Kloos; Shannon Linder; Ariane Park; Maria Kataki; Anahita Adeli; Punit Agrawal; Douglas W Scharre; Sandra K Kostyk Journal: Gait Posture Date: 2016-08-11 Impact factor: 2.840
Authors: Rianne M van der Linde; Tom Dening; Blossom C M Stephan; A Matthew Prina; Elizabeth Evans; Carol Brayne Journal: Br J Psychiatry Date: 2016-08-04 Impact factor: 9.319
Authors: Marissa Bartmess; Catherine Talbot; Siobhan T O'Dwyer; Ruth Palan Lopez; Karen M Rose; Joel G Anderson Journal: Dementia (London) Date: 2022-05-13