Setting research priorities around the impact of COVID-19 control measures on people with dementia and caregivers living at home: A 14-country perspective

BackgroundThe global impact of COVID-19 restrictions on people with dementia (PWD) living at home and their informal caregivers has been described extensively. However, adoption of this knowledge into policy and practice is limited because of a lack of coordinated, inclusive, and regionally sensitive prioritization.ObjectiveTo establish key regional research priorities for Europe and the Global South.MethodsFollowing consensus-based prioritization methods, we applied a three-step approach: 1) a systematic literature review to derive a list of topics describing how PWD and caregivers were impacted by the COVID-19 restrictions; 2) an online survey distributed to PWD, caregivers and health care professionals (HCP) across 14 countries asking respondents to select the 10 most important topics; and 3) an iterative consultation process with stakeholders from each country to translate the top-ranked topics into a research agenda.ResultsWe identified 51 quantitative and 18 qualitative relevant publications, from which we derived 38 topics. 29 PWD, 110 caregivers and 117 HCP across 14 countries prioritized these topics, which largely overlapped across stakeholder groups and countries. The top ranked priorities cluster into four themes: daily routine and physical function, mental health, disease progression, and access to care. The consultancy process with stakeholders resulted in three lines of research to address these themes: understanding mechanisms, designing and improving education, and information access.ConclusionsThis research agenda offers a roadmap to guide future research and policy aimed at strengthening support for PWD and their caregivers in times of public health crises.