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

Abstract

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.

Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end‐of‐life

“…Findings of this study complement previous work involving the engagement of older individuals with multimorbidity 21,22 ; as well as those living with dementia, as research partners 7,8 . Identifying individuals who are representative of the diverse individuals living with the disease and their care partners and striving to develop a trusting relationship with them while uplifting the capacity of the research team are keys to effective PPI partnerships 21 .…”

“…11,20 Findings of this study complement previous work involving the engagement of older individuals with multimorbidity 21,22 ; as well as those living with dementia, as research partners. 7,8 Identifying individuals who are representative of the diverse individuals living with the disease and their care partners and striving to develop a trusting relationship with them while uplifting the capacity of the research team are keys to effective PPI partnerships. 21 We and others have also established the critical importance of developing a trusting relationship with individuals with lived experiences through respect; and open and skilful communication strategies for mutually fulfilling research partnerships.…”

“…PPI involving co‐design efforts with persons with dementia are beginning to emerge particularly for early to moderate stages of the condition and there is some evidence of success with these endeavours 7,8,10 . Projects aimed at later stages of dementia rarely include a co‐design.…”

“…For example, the Canadian Dementia Priority Setting Partnership involved individuals with lived experiences of dementia, that is, persons living with dementia and their care partners, and successfully identified top 10 dementia research priorities 7 . The Canadian Consortium on Neurodegeneration in Aging (CCNA) Engagement of People with Lived Experience of Dementia Advisory Group has demonstrated active participation of people with lived experiences as partners in the CCNA research process 8 . Also, the Scottish Dementia Working Group Research Subgroup entirely comprised of people living with dementia, created core principles and resources to engage people with dementia in research 9 .…”

“…Based on their own past experiences in PPI and learning edges, researchers were able to identify key strategies and requisites to engage persons with lived experiences in dementia and EOL care in research. Essentially, our findings highlight important considerations for foundational work before engaging in international projects incorporating PPI, planning the actual engagement activities, meaningful partnership opportunities for people with lived experiences and pragmatic issues impacting PPI in ongoing and future activities.PPI involving co-design efforts with persons with dementia are beginning to emerge particularly for early to moderate stages of the condition and there is some evidence of success with these endeavours 7,8,10. Projects aimed at later stages of dementia rarely include a co-design.…”