Access to support groups for people with Alzheimer’s Disease since the COVID‐19 pandemic in the Province of Quebec : an action research approach

Abstract

AbstractBackgroundPeople with Alzheimer’s Disease (PWAD) face reduced social participation and community engagement. Community organizations have developed resources to address these challenges. During the COVID‐19 pandemic, many of them closed, and developed online resources to avoid further increasing the social isolation of PWAD (Armitage and Nellums, 2020). However, there is no consensus regarding their effects and questions remain about the way to implement them (Fields et al., 2020; Xie et al., 2020). Therefore, this study aims to: 1) describe the online support groups implemented by community organizations (e.g., Alzheimer Society) to support PWAD during the COVID‐19 pandemic; 2) Explore the ethical aspects, the safety and respect of privacy of these online groups; 3) Evaluate the engagement of PWAD in relation to these groups and their impact on social participation; 4) Develop methods to expand these resources and make them sustainable.MethodsThis four‐stage iterative research‐action study is conducted in partnership with the Federation of Quebec Alzheimer Societies (Creswell, 2009; Rauch et al., 2014). Stage 1: involves a qualitative study to identify important factors for the development of online support groups. Stage 2: will consist of co‐creation workshops with our partners to identify areas of improvement for the different support groups offered across the province of Quebec. Following the implementation of these enhanced online support groups. Step 3: will be a sequential mixed‐methods study to evaluate the process of implementing these resources and its effects on the social isolation of PWAD. Step 4: In order to identify ways to expand these resources to other communities, co‐creation workshops will be conducted.Expected resultsFacilitators and barriers to implement online support groups that respect the safety and privacy of PWAD will be identified. The effects of these online support groups on the social isolation and the engagement of PWAD will be measured to identify best practices for online services.ConclusionThe knowledge developed will enable community organizations to expand and refine online resources dedicated to PWAD in the community. Finally, the main social implication of this project is to provide access to safe, ethical and best practices for online support groups for PWAD.