In addition, the introduction of social distancing and shielding is amplifying the need to use new technologies to reach older people safely. The findings reveal key dilemmas and debates around how technology should be used to improve dementia research in future.
The findings of the report – known as RECORD: Researching the Effects of COVID-19 on Research in Dementia – are derived from online focus group discussions with researchers involved in similar aspects of dementia research.
The report states that the long-term effects of COVID-19 have been recognised as an urgent priority for clinical research, which has overshadowed other chronic illnesses like dementia. This has led to many dementia research facilities being temporarily closed to facilitate COVID-19 research or vaccination programmes, making research assistant and coordinator roles both challenging and precarious.
The study also highlights reduced diversity among research participants. The report concludes that the pandemic is likely to have exacerbated the existing lack of representation in dementia research.
Given these challenges, it emerged that digital technologies have become increasingly necessary for assessing cognition and other signs of dementia remotely, to reach a broad range of people safely. However, concerns were raised about the clinical and scientific validity of these technologies: while some participants felt digital technologies were crucial to the future of dementia research, others felt they may be measuring the 'wrong thing' for early detection and prevention.
The research was carried out by researchers working on the Dementias Platform UK (DPUK) Deep and Frequent Phenotyping study in Oxford. The report was led by Dr Natassia Brenman, who is completing an ESRC fellowship at Goldsmiths University, and holds an honorary position at the University of Cambridge, where this investigation was based.
The research facilitated a reflection on how dementia research has been affected by the COVID-19 pandemic, as well as a discussion on how to foreground dementia research in the post-pandemic landscape.
The report identifies some areas in which the pandemic has introduced new opportunities for dementia research. It finds that COVID-19 has amplified the perceived importance of understanding brain health in mid-life.
The study also presents the opportunities of utilising digital technologies in dementia research. A digital health researcher who took part in the research said: 'The forced move to online assessment due to COVID-19 has shown us what we could have been doing all along.'
The report suggests that expanding into the digital space would give much larger potential to scale up dementia research and could be 'more empowering' for participants. It also stresses, however, that the introduction of technology should be used to improve rather than reduce inclusion and access to dementia research and care.
Dr Brenman said: 'This research raises even more questions than it answers, highlighting the need to engage with the social and ethical uncertainties about the future of dementia research as well as the practical and scientific challenges. This should be done by listening closely to those navigating these issues day-to-day.'
Dr Brenman hopes the report can be a conversation starter for aspects of the COVID-19 pandemic that may be less visible. She is now working on research proposals to further investigate the opportunities raised by the report – in particular digital technologies, and the growing emphasis on brain health through the life-course.