First Monday of 2021, cars busy outside despite effectively a lockdown in Manchester, and I’m sat at my laptop in my living room after a morning run. 12 months ago I would have rushed off to catch a long commute to Liverpool, but now my workplace is and will remain at home for the foreseeable future, only a few steps away.
After the initial chaos and uncertainty back in March 2020, when no one really knew what was happening and for how long, and a national lockdown seemed like something out of a Dystopian novel, we have since much more adapted to living almost our entire lives and work lives remotely. That is, for those of us who have the opportunity and in some regards luxury to be able to work from home, bearing in mind the many frontline workers without whom vital services wouldn’t function.
So how has dementia research changed, and most research for that matter? Pre-pandemic, data collection in my field of work would involve visiting people living with dementia and carers in their own home, or health and social care professionals. Alternatively, they would attend the University. Data collection would involve either qualitative or quantitative data, and with quantitative data, that might be a survey, a list of established questionnaires, or neuropsychological assessments of the person living with dementia.
Suddenly, since March, we had to adapt everything to remote data collection. At first I’m sure many of us were a bit concerned over whether we would still be able to carry out our research. But with time, adapting to collecting data over the phone, zoom, and the internet, proved to be quite effective. Plus, the added bonus of no travel time for either the researcher or the participants.
But remote data collection can present its difficulties as well. Dementia mostly affects older adults, many of whom can experience difficulties in using the internet or don’t have any internet access in the first place. Plus, add on top of that the dementia itself, and you may need a family carer or care home staff to support the person living with dementia to set up the internet or go through a survey for example.
We also shouldn’t forget that many people might be unable to afford the internet/ a computer/smartphone. This may leave out an important part of carers and people with dementia if they don’t see online/social media recruitment adverts, which traditionally would be often advertised for in GP surgeries, supermarkets, or community centres. Now everything is online. People without internet access might not become aware of these opportunities in the first place. And then may be excluded from taking part if everything is done virtually.
The way around this? Collecting data over the phone always should be an alternative, but again this is only viable for more qualitative research or some survey-based research. For example, we couldn’t easily ask a person with dementia to draw the Complex Rey Figure over the phone – how would they see it? How would we be able to judge it? Working closely with third sector organisations, who may have the telephone contact details of their members/users and may contact them about a study is also one option for recruitment. GP surgeries are understandably busy with rolling out the vaccines at super speed, so that avenue of recruitment is unlikely at the moment.
Another way of continuing to conduct research is to utilise routine data more often, such as via the SAIL Databank. Using routine data is an important way of looking at more population-level data, complementing more individual-level research such as interviews and questionnaires. As the data are collected routinely, and us not having to collect the data ourselves, this is a good way to continue dementia research if data collection may be hindered.
So there are definitely ways around the restraints of COVID on dementia research, but it leaves some limitations still. Whilst 2021 looks more hopeful, with the Oxford-Astra Zeneca vaccine now being rolled out also, I am sure that some of those learnings from the pandemic will become embedded in (dementia) research – will we always have to travel to someone’s home to conduct an interview in post-pandemic times for example? Will we have to commute sometimes several hours each day to get to the office, when we can effectively work from home? A good mix of home working and office working should be available for all researchers, helping us to have a better work-life balance whilst not missing out on those important little chats in the office kitchen and the need to wear proper trousers and dresses again, not leggings 5 days a week!
Dr Clarissa Giebel is a Research Fellow at the University of Liverpool and NIHR ARC North West Coast. She has been working in dementia care research for over 7 years focusing her research on on helping people with dementia live at home independently for longer.
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