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Recent data from across the globe show that COVID-19 is disproportionately affecting those who are already adversely impacted by social determinants of health. In this paper, we explore how members of the Alliance for Healthier Communities - comprehensive, salary-based primary care organizations in Ontario - anticipated the same and rapidly responded by adapting their services to ensure continued equitable access to primary care services. Lessons from this project could be adapted in other primary care team-based models or partnerships to ensure ongoing support for populations that are most at risk from COVID-19 and the consequences of restricted access to services.

Patient ‘engagement’ or ‘involvement’ in health research broadly refers to including people with lived experience (i.e. individuals with personal experience of a health issue and their friends, family and caregivers or carers) in the research process. Although previous reviews have systematically summarized approaches to patient engagement in research, it is unclear whether and how engagement activities have been implemented or adapted for research related to dementia. We conducted a scoping review to describe the extent and nature of patient engagement approaches that have been used to involve persons with dementia and their care partners in research. We then summarized the reported barriers, enablers, and impacts of this engagement. Fifty-four research articles were included in the review and almost all were published after 2010. Persons with dementia and their care partners have been engaged in diverse phases of the research process. The majority of engagement involved both persons with dementia and care partners. Barriers and enablers to engagement included those identified for general patient engagement in research, but some more specific to engaging persons with dementia and their care partners were also reported. Very few studies assessed the impact of patient engagement. While the arguments for patient engagement in research are compelling, research to demonstrate the impact – on the research process and outcomes as well as on persons with dementia, care partners, researchers, research institutions and society – is still needed.

OBJECTIVES To engage persons with dementia, friends, family, caregivers, and health and social care providers to identify and prioritize their questions for research related to living with dementia and prevention, diagnosis, and treatment of dementia. DESIGN The Canadian Dementia Priority Setting Partnership (PSP) followed James Lind Alliance PSP methods. Results were compared with the World Health Organization research prioritization exercise and the United Kingdom Dementia PSP. SETTING Canada. PARTICIPANTS In the first survey, 1,217 individuals and groups from across Canada submitted their questions about dementia. 249 participated in the interim prioritization. For the final prioritization workshop, the 28 participants included persons with dementia, friends, family, caregivers, health and social care providers, Alzheimer Society representatives, and members of an organization representing long‐term care home residents. RESULTS The Canadian Dementia PSP top 10 priorities relate to health, quality of life, societal issues, and dementia care. Five priorities overlap with one or both of the other two prioritization initiatives. CONCLUSION These results provide researchers and research funding agencies with topics that individuals with personal or professional experience of dementia prioritize, but they are not intended to preclude research into other aspects of dementia.

To engage persons with dementia, friends, family, caregivers, and health and social care providers to identify and prioritize their questions for research related to living with dementia and prevention, diagnosis, and treatment of dementia.The Canadian Dementia Priority Setting Partnership (PSP) followed James Lind Alliance PSP methods. Results were compared with the World Health Organization research prioritization exercise and the United Kingdom Dementia PSP.Canada.In the first survey, 1,217 individuals and groups from across Canada submitted their questions about dementia. 249 participated in the interim prioritization. For the final prioritization workshop, the 28 participants included persons with dementia, friends, family, caregivers, health and social care providers, Alzheimer Society representatives, and members of an organization representing long-term care home residents.The Canadian Dementia PSP top 10 priorities relate to health, quality of life, societal issues, and dementia care. Five priorities overlap with one or both of the other two prioritization initiatives.These results provide researchers and research funding agencies with topics that individuals with personal or professional experience of dementia prioritize, but they are not intended to preclude research into other aspects of dementia.

IntroductionPeople are living longer; however, they are not necessarily experiencing good health and well-being as they age. Many older adults live with multiple chronic conditions (MCC), and complex health issues, which adversely affect their day-to-day functioning and overall quality of life. As a result, they frequently rely on the support of friend and/or family caregivers. Caregivers of older adults with MCC often face challenges to their own well-being and also require support. Currently, not enough is known about the health and social care needs of older adults with MCC and the needs of their caregivers or how best to identify and meet these needs. This study will examine and synthesise the literature on the needs of older adults with MCC and those of their caregivers, and identify gaps in evidence and directions for further research.Methods and analysisWe will conduct a scoping review of the peer-reviewed and grey literature using the updated Arksey and O’Malley framework. The literature will be identified using a multidatabase and grey literature search strategy developed by a health sciences librarian. Papers, reports and other materials addressing the health and social care needs of older adults and their friend/family caregivers will be included. Search results will be screened, independently, by two reviewers, and data will be abstracted from included literature and charted in duplicate.Ethics and disseminationThis scoping review does not require ethics approval. We anticipate that study findings will inform novel strategies for identifying and ascertaining the health and social care needs of older adults living with MCC and those of their caregivers. Working with knowledge-user members of our team, we will prepare materials and presentations to disseminate findings to relevant stakeholder and end-user groups at local, national and international levels. We will also publish our findings in a peer-reviewed journal.