Social participation perspectives of people with cognitive problems and their care-givers: a descriptive qualitative study

Abstract

ABSTRACTThe aim of this study is to explore how community-dwelling older people with cognitive problems and their care-givers (dyads) perceive their own social participation, how care-givers evaluate the social participation of the people they care for and what factors they perceive as influential. In this qualitative study, we performed 13 semi-structured, in-depth interviews with dyads who participated in the Social Fitness Programme. We used content analysis to analyse the interviews thematically. Social participation perceptions include changes over time and a discrepancy in perspectives. All the people with cognitive problems and most care-givers perceived a decreased social participation. Most people with cognitive problems answered that they were satisfied, in contrast to most care-givers who were dissatisfied with the decreased social participation of the people they cared for. Analysing the influencing factors resulted in five themes: behavioural, physical, social environmental, physical environmental and activity-related. People with cognitive problems and their care-givers displayed a discrepancy in social participation perspectives. This becomes a major dilemma, especially for younger care-givers. A key element is a sometimes deliberate choice of people with cognitive problems to refrain from social participation to protect themselves from the consequences of cognitive problems and from encounters with others. This highlights the dynamics of social participation as an interaction between personal factors and the social and physical environment in which social participation occurs.