Improving the care of older adults living with dementia across Canada during the COVID-19 pandemic: a mixed methods study to inform policy and practice

Persons living with dementia (PLWD) are disproportionally impacted by the current COVID-19 pandemic. Not only are they at increased risk of severe COVID-19 disease and mortality, they are particularly vulnerable to the consequences of the pandemic including containment strategies (eg. physical distancing) and disruptions in the healthcare system, especially non-COVID care due to 1) difficulty in recalling public health recommendations, 2) disruptions to formal care channels and support networks (e.g. postponed day program, virtual consultation with physicians, shortage of workers and volunteers in home care and community services) and 3) increase isolation, anxiety and depression due to physical distancing measures. Caregivers are also strongly impacted, with increased stress, anxiety and burden. In order to inform policy-makers, health system managers, clinicians, and community organizations, as quickly as possible, we will conduct a study to measure, describe and identify strategies to address the pandemic as well as its consequences in persons living with dementia. We will conduct this study in four provinces (QC, ON, AB, SK), as well as in France. We will leverage our existing infrastructure, expertise and methods to measure the impact of the pandemic and its consequences on health service use, infection rate and mortality in persons with dementia, with data extracted from health administrative databases. We will describe the lived experiences of persons with dementia and their caregivers, as well as family physicians regarding health and social services based on qualitative interviews and surveys. Finally, we will conduct an online deliberative consultation with key stakeholders (persons with dementia, caregivers, clinicians, managers, and decision-makers), to discuss the research findings, share promising avenues, and generate evidence-based recommendations to mitigate the negative impacts of the pandemic and its consequences on persons with dementia.