Exploring the Social Connection of Young Caregivers of People Living with Dementia in Ontario

Abstract

AbstractBackgroundCaregiving at a young age can have negative effects on relationships, mental health, and emotional regulation. Notably, dementia caregivers are at higher risk of experiencing social isolation due to their caregiving responsibilities (1‐3). However, there is a lack of knowledge of the experiences of young caregivers of people living with dementia (YCPLWD). Our project is the first to recognize YCPLWD as a unique population and seeks to improve their social connection, which is how individuals connect with each other, and it is comprised of multiple aspects (4) (Figure 1). Our project goals are to:1. Describe the experiences of social connection among YCPLWD.2. Identify barriers and facilitators to social connection.MethodOur project applies the Toronto Translational Framework (5) (Figure 2), a patient‐centric approach to identify person‐centered needs in healthcare and co‐create innovative solutions. Qualitative data will be collected through 2‐4 focus groups, each with 6‐8 YCPLWD. Participant criteria include English‐speaking post‐secondary students (aged 18‐24 years) who have provided care to a person(s) living with dementia in the past 12 months and are currently living in the Greater Toronto and Hamilton area. Participants will be recruited using both convenience and snowball sampling. Focus groups will be audio‐recorded, transcribed verbatim, then analyzed using Braun & Clarke’s thematic analysis (6) to identify significant themes.ResultFocus group discussions will focus on (1) experiences with and the impact of social connection, and (2) facilitators and barriers to social connection. These sessions will enable YCPLWD to co‐create knowledge with their peers and share unique insights about the social experience of caregiving. Moreover, focus group findings will be mapped onto Liougas et al.’s framework (4) to verify how YCPLWD experience and articulate different aspects of social connection, including resources, activities, and subjective feelings.ConclusionThis project will recognize YCPLWD as a vulnerable population with unique and specific needs. Given the heterogeneity of dementia caregiving experiences, YCPLWD may face various challenges that can be further understood. Moreover, by exploring barriers and facilitators to social connection, this project will inform the development of novel resources to educate and support YCPLWD.