Going From Zero to 100 in Remote Dementia Research: A Practical Guide

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.

Acceptability of the voice your values, an advance care planning intervention in persons living with mild dementia using videoconferencing technology

“…These helped optimize participants’ hearing experience, especially for those who had mild hearing loss. However, much of the success of initiatives involving videoconferencing requires a high quality connection of 1024 kbps bandwidth [ 17 ]. Some of the participants who lived in the rural regions experienced choppy signals at times, which impacted the overall experience.…”

“…The VYV intervention was initially developed for face-to-face delivery in a clinic or PLwD’s homes, but it was not tested in this format due to the physical distancing measures instituted in light of the COVID-19 pandemic. It was therefore adapted to be delivered virtually using principles of remote methods for dementia research, as prescribed in a practical guide we developed with researchers who are experts in the field [ 17 ]. Despite the widespread use of virtual care during the pandemic, there is no specific evidence to guide the practice of virtual ACP.…”

The Development of Videoconference-Based Support for People Living With Rare Dementias and Their Carers: Protocol for a 3-Phase Support Group Evaluation

“…In addition, because of the setup of the groups, all participants were required to familiarize themselves with the use of videoconferencing software, which likely would have excluded a number of individuals, particularly those living with dementia with additional accessibility needs. The study by O’Connell et al [ 66 ] suggests that participants should be provided with the option of joining via phone and video calls when conducting research remotely. This option was made available during the consenting process; however, it was not encouraged during the VSGs.…”

Playing remotely in times of crisis: A program to overcome social isolation

“…Difficulties in using technology observed in the current program have been reported by many other studies that investigated the response of people with aphasia and dementia to telehealth interactions. 48 , 49 , 50 As the literature suggests, these challenges are not insurmountable, and the support strategies offered in the Playful Living program are similar to those recommended. 49 , 50 Advances must be made to make technology and telehealth interventions available to vulnerable older adults.…”

“…48 , 49 , 50 As the literature suggests, these challenges are not insurmountable, and the support strategies offered in the Playful Living program are similar to those recommended. 49 , 50 Advances must be made to make technology and telehealth interventions available to vulnerable older adults. However, giving access to technology is not sufficient.…”