Navigating a changing world of social participation: a qualitative interview study with people with dementia and their informal caregivers

Abstract

ObjectivesThis study explored the social out-of-home participation experiences of people with dementia and their informal caregivers from a capability-based approach.MethodTwelve dyadic interviews with people with dementia living in the community and their informal caregivers were conducted. Data were inductively coded using a reflexive thematic analysis approach.ResultsAll participants with dementia experienced changes in activities, social interactions or out-of-home mobility, captured in the overarching theme of 'social participation: a changing world'. Four subthemes captured the primary strategies participants used to navigate these changes: (1) creating a sense of comfort and safety in nearby, quiet, and familiar places; (2) pursuing a sense of social identity through meaningful connections; (3) accepting support to maintain independence; and (4) finding a balance, as described by informal caregivers, between their own social needs and those of their spouses. These themes highlight the agency of people with dementia in shaping their social participation amid changes in capabilities and environments.ConclusionThis study contributes to a more nuanced understanding of social participation in dementia, emphasising the importance of supportive environments that recognise both capabilities and needs can enable continued engagement and foster social health.