Coping with Dementia Clinical Trial Interruption: Virtual Support Group for Participants and Study Partners

Abstract

Introduction Biopsychosocial benefits of participation in longitudinal research – increased access to specialized physicians, frequent medical supervision, social support from research staff, a sense of purpose and routine, etc. – have been documented and are valuable contributors to patient wellbeing. An important but lesser-examined consequence of the COVID-19 pandemic is the sweeping disruption of ongoing clinical trials – in particular, those investigating the safety and efficacy of disease-modifying therapeutics for dementia, as older adults have been disproportionately affected by the pandemic. Methods To address the potential negative outcomes of clinical trial interruption, we initiated weekly virtual clinician-led support groups: one for dementia clinical trial participants and one for their study partners. Each group met once weekly for 5 weeks via Zoom, and content included coping strategies, sharing resources, voicing challenges, and answering questions about the future. Results According to feedback gathered anonymously, support group participants found the aspect of listening to and sharing experiences to be highly useful and overall felt that participation in the group had helped them cope with the negative effects of the pandemic. Conclusions The positive impact and feedback gathered from the pilot of this support group can help to inform our understanding of the complex ways in which longitudinal clinical trials participation affects the lives of participants and their families, and how best we can support them even after the research has paused or ended.