ABSTRACT
While older people living with dementia have been disproportionally affected by COVID-19, the devastating effect of the COVID-19 pandemic has also significantly impacted patient partner involvement in research. Engaging people with dementia in research (from research planning, data collection, team analysis, and dissemination) helps produce relevant, meaningful outcomes and reduce disparities. The COVID-19 pandemic has exposed the fragile state of patient involvement in research and forced researchers to develop innovative ideas to engage and partner with patients. During outbreaks, patient partners (people living with dementia) could not enter the clinical sites for in-person research meetings. The drastic shift to online platforms in research posed difficulties for research teamwork. One of the strategies used by our research team to support patient partner involvement in research activities during the pandemic was a telepresence robot which was useful for conducting remote interviews. However, despite the rapid development of technological aid to facilitate research during the pandemic, remote research work gave rise to a unique set of challenges. This chapter depicts specific issues our research team encountered while conducting research in Canadian Long-Term Care (LTC) homes during the pandemic. Coping strategies are described, such as sending patient partners new computers and headphones, providing virtual technology training, finding new ways to maintain team connections, and supporting patient partners during lockdowns. Finally, reflections, lessons learned, and practical tips about applying Collaborative Action Research (CAR) principles to continue supporting patient partners as active research contributors are discussed.
