Engaging people with lived experience of dementia in research meetings and events: insights from multiple perspectives.

This perspective article describes the experiences of engaging people with lived experience of dementia in research meetings and events from the perspectives of people with lived experience, researchers, trainees, audience members and others. We outline examples of engagement from different events and describe a video project, initiated by people with lived experience, conveying diverse views about becoming integral collaborators in the Canadian Consortium on Neurodegeneration in Aging (CCNA) annual Partners Forum and Science Days. We also report evaluation data from audiences and present a series of tips and strategies for facilitating this engagement, including practical considerations for supporting people with lived experience.

Home- and community-level predictors of social connection in nursing home residents: A scoping review.

Background and Aims: Social connection is associated with better physical and mental health and is an important aspect of the quality of care for nursing home residents. The primary objective of this scoping review was to answer the question: what nursing home and community characteristics have been tested as predictors of social connection in nursing home residents? The secondary objective was to describe the measures of social connection used in these studies. Methods: We searched MEDLINE(R) ALL (Ovid), CINAHL (EBSCO), APA PsycINFO (Ovid), Scopus, Sociological Abstracts (ProQuest), Embase and Embase Classic (Ovid), Emcare Nursing (Ovid), and AgeLine (EBSCO) for research that quantified associations between nursing home and/or community characteristics and resident social connection. Searches were limited to English-language articles published from database inception to search date (July 2019) and update (January 2021). Results: We found 45 studies that examined small-scale home-like settings (17 studies), facility characteristics (14 studies), staffing characteristics (11 studies), care philosophy (nine studies), and community characteristics (five studies). Eight studies assessed multiple home or community-level exposures. The most frequent measures of social connection were study-specific assessments of social engagement (11 studies), the Index of Social Engagement (eight studies) and Qualidem social relations (six studies), and/or social isolation (five studies) subscales. Ten studies assessed multiple social connection outcomes. Conclusion: Research has assessed small-scale home-like settings, facility characteristics, staffing characteristics, care philosophy, and community characteristics as predictors of social connection in nursing home residents. In these studies, there was no broad consensus on best approach(es) to the measurement of social connection. Further research is needed to build an evidence-base on how modifiable built environment, staffing and care philosophy characteristics-and the interactions between these factors-impact residents' social connection.

Engagement of people with lived experience of dementia advisory group and cross-cutting program: reflections on the first year.

BACKGROUND: The objective of this paper is to describe the activities, challenges and mitigation strategies, lessons learned and reflections on the importance of engagement from the first year of the Canadian Consortium on Neurodegeneration in Aging (CCNA) Engagement of People with Lived Experience of Dementia (EPLED) Advisory Group and cross-cutting program. EPLED was created to support persons with dementia and care partners to be actively involved in the CCNA research process. MAIN BODY: The Advisory Group was formed to work with CCNA researchers and programs to develop new ways to further collaborate and advance the methods of patient engagement in research on dementia. A role profile and recruitment poster were developed and, after interviews, 17 people were invited to join the Advisory Group. We planned three online EPLED meetings to take place between July-August of 2020, with one in-person meeting to be held in Canada. Due to COVID-19, we moved all of these meetings online. In the first year, EPLED and the Advisory Group met seven times formally, four times informally, developed a website, engaged with CCNA research projects, participated in CCNA "Central" activities and formulated an evaluation plan. For researchers and people with lived experience of dementia, motivations for patient engagement included challenging stigma, making meaning from their experience (such as building relationships and having their voices heard) and contributing to research. Common challenges to engagement were related to navigating the impact of COVID-19, such as difficulty in getting to know each other and technical issues with video-conference software. We learned that developing trusting relationships, providing education, offering support, being flexible and acknowledging tensions between research, practice and lived experience, were vital to the success of the Advisory Group. CONCLUSION: The first year of the EPLED Advisory Group demonstrated the potential contributions of people with lived experience of dementia as partners in research. Building these collaborations with individuals and communities-people living with dementia, care partners, researchers and research institutions-has the potential for positive impact across these groups and, ultimately, improve the lives of people living with dementia and their care partners.

In this paper, we describe the development of the Canadian Consortium of Neurodegeneration in Aging (CCNA) Engagement of People with Lived Experience of Dementia (EPLED) cross-cutting program and the first year of the EPLED Advisory Group. EPLED was created to build opportunities for patient engagement in the CCNA's research on dementia. People living with dementia and current/former friends, family and care partners were recruited from across Canada to join the Advisory Group. In the first year, the Advisory Group met seven times formally, four times informally, developed a website, engaged with CCNA research projects, participated in CCNA "Central" activities and formulated an evaluation plan. Challenges included the impacts of the COVID-19 pandemic, online meetings, and differing expectations and priorities. Lessons learned and reflections on the importance of engagement are discussed in the context of research on dementia and from the perspectives of researchers and Advisory Group members.