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Remote Measures

Conducting research in the field of dementia has always presented a range of challenges specific to this population group. Participants are mostly older adults, may have a range of comorbid conditions, and may also experience hearing and sight difficulties, making the administration of cognitive measures tricky in themselves. Dementia itself presents distinct issues around the degenerative nature of the condition, fluctuating capacity, cognitive symptoms, and the high degree of sensitivity required when conducting memory assessments and other measures in a group that may already be experiencing distress and frustration about their diagnosis. This patient group are, by definition, vulnerable adults.

The emergence of COVID-19 and the subsequent shielding and isolation of this group has had an inevitable and significant effect on the delivery of dementia-based research studies, raising many new challenges that need to be overcome. While many of the challenges to research are not limited to participants with dementia, there is no doubt that conducting research with this group is particularly exacerbated in a COVID-19 world.

One of the primary issues has been the suspension of face-to-face visits, especially during the initial lockdown phase. As research is not a clinical necessity, many studies within the NHS, and elsewhere, were necessarily suspended if face-to-face visits were a required part of the delivery of measures, in order to protect vulnerable adults and researchers alike. In addition, resources were, quite rightly, diverted to COVID-19 studies over other types of research due to the public health emergency. Adults with dementia were shielded both because of dementia, but also, in some cases, because of comorbid health-related problems. This had data-related consequences for research studies that were longitudinal in nature, or in their follow-up phases, where measures had already been conducted face to face over several timepoints.

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Shani McCoy has worked in research delivery for the R&D department at Berkshire Healthcare Foundation Trust for a total of six years. Prior to this, she worked on a number of her own research studies both behavioural and neuroscience-based. She currently works in the trust as a Senior Clinical Research Practitioner for the Memory and Cognition Research Unit based at the University of Reading, delivering a variety of research protocols in the field of dementia and neurodegenerative disorders. Shani is a member of Join Dementia Lead for Berkshire, which is the national dementia research database of the NIHR.

shani.mccoy@berkshire.nhs.uk

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