Dementia wellbeing and COVID-19: Review and expert consensus on current research and knowledge gaps.

Kathy Y Liu,Joanne Goddard,Adelina Comas‐Herrera,David J Sharp,Andrew Sommerlad,Gill Livingston,James B Rowe,Louise Robinson,Robert Howard,Ross W Paterson,Alistair Burns,Martin Knapp,John T O'Brien,Aida Suárez‐González,Jill Manthorpe,Martin Rossor,Sube Banerjee

doi:10.1002/gps.5567

Abstract

ObjectivesIn response to a commissioned research update on dementia during the COVID‐19 pandemic, a UK‐based working group, comprising dementia researchers from a range of fields and disciplines, aimed to describe the impact of the pandemic on dementia wellbeing and identify priorities for future research.MethodsWe supplemented a rapid literature search (including unpublished, non‐peer reviewed and ongoing studies/reports) on dementia wellbeing in the context of COVID‐19 with expert group members' consensus about future research needs. From this we generated potential research questions the group judged to be relevant that were not covered by the existing literature.ResultsThemes emerged from 141 studies within the six domains of the NHS England COVID‐19 Dementia Wellbeing Pathway: Preventing Well, Diagnosing Well, Treating Well, Supporting Well, Living Well and Dying Well. We describe current research findings and knowledge gaps relating to the impact on people affected by dementia (individuals with a diagnosis, their carers and social contacts, health and social care practitioners and volunteers), services, research activities and organisations. Broad themes included the potential benefits and risks of new models of working including remote healthcare, the need for population‐representative longitudinal studies to monitor longer‐term impacts, and the importance of reporting dementia‐related findings within broader health and care studies.ConclusionsThe COVID‐19 pandemic has had a disproportionately negative impact on people affected by dementia. Researchers and funding organisations have responded rapidly to try to understand the impacts. Future research should highlight and resolve outstanding questions to develop evidence‐based measures to improve the quality of life of people affected by dementia.

Highlights

The COVID‐19 coronavirus pandemic disproportionately affects people living with dementia who have a substantially increased risk of infection and subsequent death,[1,2] accounting for 31% of all COVID‐19 related deaths.[3]
We describe the main findings from these studies and key gaps in research identified by expert consensus in relation to each of the six steps of the COVID‐19 Dementia Wellbeing Pathway, summarised in Box 1
The overall negative impact of COVID‐19‐related restrictions on people living with dementia and their carers' wellbeing, mental health and functioning was explored by over 30 publications, which included participants with a range of different dementias.[129]

Summary

Introduction

The COVID‐19 coronavirus pandemic disproportionately affects people living with dementia who have a substantially increased risk of infection and subsequent death,[1,2] accounting for 31% of all COVID‐19 related deaths.[3]. In the UK, people affected by dementia (individuals with dementia, their carers and social contacts, health and social care practitioners and volunteers), were ‘worst hit’ by the pandemic.[4,5] Dementia services, research activities and funding have been reduced, while health inequalities have widened.[6] Initiatives to investigate and address these impacts have begun to identify learning from pandemic experiences, but research that includes people living with dementia has been affected because of their vulnerability to COVID‐19.

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Results

Conclusion