Strategizing Transdisciplinary Research Priorities Around the Impact of COVID-19 Control Measures on People with Dementia and Care Partners Living at Home: A 14-Country Perspective

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The STRAP Consortium Report—Executive Summary

People with dementia and their care partners, particularly those living at home, were disproportionally affected by the COVID-19 pandemic. These individuals experienced significant negative impacts of COVID-19 control measures, such as social isolation and closure of services.

During the peak of the pandemic, national and local governments were forced to make quick decisions in a context of great uncertainty. Suppressing spread of the virus was prioritized over other needs. Looking back, the benefits of the control measures did not always outweigh the harms, particularly in the situations of people with dementia and their care partners. Research is needed to better understand the impact of control measures to provide knowledge that policymakers can use to make better informed decisions in future crisis situations. In this report, we describe the research priorities people with dementia, their care partners and health care professionals for future research in this context, and translate their priorities into a research agenda.

The priorities identified by the three stakeholder groups partly overlapped, but also complimented each other. Despite marked differences in culture, lifestyles and health systems across the participating countries in this consortium, the current findings showed similarities across countries in priorities for future research and policy change. Therefore, the findings were combined into one research agenda.

The data presented in this report were collected in 14 countries (i.e. Brazil, Chili, Colombia, Ecuador, France, Greece, India, Ireland, Nepal, Netherlands, Nigeria, Peru, South Africa and UK) and across three stakeholder groups (i.e. people with dementia, their care partners and health care professionals). The priorities identified by the three stakeholder groups partly overlapped, but also complimented each other. Despite marked differences in culture, lifestyles and health systems across the participating countries in this consortium, the current findings showed similarities across countries in priorities for future research and policy change. Therefore, the findings were combined into one research agenda.

The priorities cluster together into four themes: physical health and daily routine, mental health, disease progression and carer impact. Across these four themes, three pillars were identified for future research. The first pillar, mechanisms, encourages research to understand how the control measures impacted on each theme. The second pillar, interventions, asks for research to develop and evaluate interventions to prevent or mitigate the negative effects of the control measures. The third pillar, information and education, was added as many participants expressed concerns about their health and wellbeing as a result of the pandemic and the control measures. Information and education play an important role in taking away those concerns. Finally, outcomes of the proposed research should be translated into (recommendations for) policy.

The goal of this research agenda is to provide overarching guidance for science funders and researchers on the key priorities for research in dementia, as defined by people with dementia, their care partners and health care professionals. Through this guidance, this research agenda encourages international alignment of research efforts to provide better care and support for people with dementia and their care partners in future crisis situations.