“You’re Part of Us and We’re Happy to Have You Here”: Practices of Social Inclusion for Persons with Dementia

ABSTRACT

Objectives: Practices of social inclusion are important for maintaining the relationships of persons with dementia and are associated with positive clinical outcomes. The objective of this study was to explore the in-action practices of social inclusion in the activity center of a community-based organization.

Methods: This study applies an ethnographic approach – including participant observation, informal and semi-structured interviews – with persons with dementia (n = 31) and organization staff members (n = 9) to explore the in-action practices of social inclusion.

Results: Seven in-action practices of inclusion were identified: ensuring time for individual relationships, building schedules centered around flexibility, empowering decision-making, normalizing dementia-related behaviors, involving family members, soliciting and integrating persons with dementia’s feedback, and supporting persons with dementia to practice social inclusion.

Conclusions: Care providers of individuals with dementia can effectively facilitate active connections with them by continually soliciting and incorporating their feedback, and by supporting persons with dementia to practice inclusion and care for others.

Clinical Implications: Community-based organizations can be effective at supporting the active connection of individuals with dementia with others and should be promoted for individuals with mild to moderate dementia.

KEYWORDS:

• In-action practices
• best practices
• home and community-based care and services
• community-based organization
• social inclusion
• aging
• dementia
• social support
• isolation
• person-centered care

Acknowledgments

We would like to thank to AGI Inc. for hosting this research and being our institutional partner; Melissa Park, Keven Lee, Jason Da Silva Castanheira and Chelsey Lai Kwan for their participation in the data analysis meetings;  Yasmin Lalani for coordinating the project as well as the research participants without whom this study would not be possible.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This study was supported by the CIHR Operating Grant “Moving With and Tuning In: A participatory mixed methods study to foster social inclusion of individuals with dementia and their carers” (CIHR-SII-150704) and Alzheimer’s Society of Canada (Grant #17C). Participation of ER in this study is supported by a career award of the Fonds de recherche du Québec – Santé (271913).