Context: Persons living with dementia (PLWD) in Canada, both in the community and in long-term care, have been severely affected by the COVID-19 pandemic due to their higher risk of severe COVID-19 as well as for the public health measures. A research project was developed to better address the needs and care of PLWD and caregivers/care partners in the context of the COVID-19 pandemic by developing timely, actionable, evidence-based recommendations. For this, a patient engagement strategy was used to ensure meaningful inclusion of persons with lived experience throughout the research project.
Objective: To describe the process of the involvement of, and collaboration with, persons with lived experience on dementia in our research project. Specifically, the aim is to describe the contribution of the patient partners on our research approach, research questions, and creation of data collection tools.
Study design: A reflective case study.
Setting: A Pan-Canadian research team running a mixed method study to understand the impact of COVID-19 pandemic for PLWD and care partners and their experiences in using health and social care services.
Population studied: Research approach, protocol, and data collection tools.
Outcome measures: Thematic analysis of meetings minutes, recordings and reflection texts from researchers and persons with lived experience, as well as a content analysis of the changes to the protocol throughout the research project.
Preliminary Results: Persons with lived experience have influenced the research project by 1) modifying overall research question and sub-questions; 2) co-generating a framework for our research project based on their experience and areas of interest; 3) implementing the use of the World Health Organization human-rights framework for PLWD for data analyses, and 4) co-developing the qualitative data collection tools (interview guides). For the rest of the project, they will also collaborate with the following activities: the recruitment of participants, results interpretation, and organization of and participation in a deliberative dialogue for providing policy recommendations. A list of recommendations on engagement of persons with lived experience in research will be generated.
Conclusions: This study will inform and guide future research projects aiming to engage persons with lived experience on dementia in a meaningful way and how to reflect on this activity.