Abstract
Remote approaches for dementia research are required in the era of COVID-19, but moving a research program from in person to remote involves additional considerations. We recommend using outcome measures that have psychometric properties for remote delivery, and we recommend against adapting in-person scales for remote delivery without evidence for psychometric equivalency. We suggest remote research designs that maximize benefit for participants, which could have implications for control groups. Researchers should plan for flexibility in their methods for remote research and must not assume all participants will be able to videoconference; telephone-only research is possible. We recommend performing an assessment of information communication technology infrastructure and prior exposure to this technology with each participant before making a final choice on remote methods for research. In general, researchers should adapt their methods for remote research to each participant rather than requesting participants to adapt to the researchers. Screening for sensory loss should be conducted, and the impact of this on the use of technology for remote research should be considered. In this viewpoint, we detail how individualized training is required prior to engaging in remote research, how training plans interact with cognitive impairments and, finally, the steps involved in facilitating technology-based remote data collection.
Highlights
Remote approaches for dementia research overcome barriers to participation in the era of COVID-19 requiring social distancing measures, but are required to mitigate other factors, such as geographic barriers experienced by rural families [1,2,3]
In the midst of the COVID-19 pandemic, there are additional considerations: is this research necessary at time? Does participation involve undue stress or increase risk exposure? Does the use of remote methods undermine the quality of the research? For example, many of us are conducting remote dementia assessments, but would this method of diagnosis meet the research standards for a gold standard in validation studies? This decision-making process could have implications for research design—for example, does the use of a control group make some research untenable at this particular time given the impacts on the risk benefit analysis? Clearly, the risk benefit analysis depends on circumstances
We argue that in-person contact in the era of COVID-19 should be minimized for research, and that virtual or remote methods, which are in many situations the only option, are ethically preferred
Summary
Remote approaches for dementia research overcome barriers to participation in the era of COVID-19 requiring social distancing measures, but are required to mitigate other factors, such as geographic barriers experienced by rural families [1,2,3]. This decision-making process could have implications for research design—for example, does the use of a control group make some research untenable at this particular time given the impacts on the risk benefit analysis? We argue that in-person contact in the era of COVID-19 should be minimized for research, and that virtual or remote methods, which are in many situations the only option, are ethically preferred. Where an ethical decision-making process has determined the benefits to outweigh the (ideally minimal) risks, we aim in this viewpoint to provide guidance on how to move your research from in-person to remote work. We draw your attention to the ordering of some steps, which might be counterintuitive
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