Coordinating Connection: Establishing a Dementia-Inclusive Digital Community

Abstract

In this paper, we reflect on the behind-the-scenes work of developing ways of using "digital technology" to both build a community of people with dementia and transcend the geographic boundaries of local communities. In the participatory action research (PAR) project Flipping Stigma on Its Ear, an Action Group (AG) of people living with dementia met bi-weekly over four years (2019 – 2023) to explore understandings and experiences of stigma and discrimination associated with dementia and develop tools for dementia advocacy. The onset of the COVID-19 pandemic and distancing restrictions enforced in early 2020 meant that the group could no longer gather in person at a neighbourhood house, located in the Lower Mainland of BC. Motivated by the AG members’ dedication to continuing involvement in the project and with encouragement from our partner in Thunder Bay, who had been using online platforms for several years with people with dementia, our team of researchers and AG members quickly learnt how to use Zoom together, and with the AG members’ guidance, developed strategies to support their online engagement.

 In the Flipping Stigma on Its Ear project, creating a dementia-inclusive digital space required establishing supports that were flexible, individualized and embedded in knowledge of the lived experience of dementia. Specific strategies that we utilized to support equitable recruitment and ongoing engagement of people living with dementia in the project included: offering technical assistance and access to resources, involving AG members in decision-making, encouraging peer support, coaching care partners, and identifying local support systems.

Although the circumstances forced us to adopt Zoom to sustain engagement in the project, this virtual space enabled the involvement of people from diverse places across BC (urban, rural and remote communities) and has become its own unique dementia-inclusive digital community for the AG members. Moreover, bringing together people from geographically diverse communities has exposed the group to different contexts shaping their lives and allowing its members to form new connections within and outside their communities. Access to relational technology allowed AG members, geographically located across BC, to work alongside each other towards shared goals and form a province-wide leadership group and a geographically bound identity as a BC group. This work lends insights into the strategies utilized to establish a digital community of people living with dementia that is diverse, equitable, and inclusive.