“I need you to pick him up.” Next of kin’s experiences with social support in dementia

Abstract

Introduction: Demographic changes entail an increasing incidence of dementia. Next of kin experience challenges in health due to a mismatch between social support and burdens of care in everyday life. The aim of the study was to contribute to knowledge about what characterises the experience and learning of social support among the next of kin of people with dementia – and how this experience can be understood. Methods: The study used a qualitative research design. The sample contained thirteen persons participating in three focus group interviews, six women and seven men in different next of kin roles, experiencing different phases of dementia, and from both rural and urban municipalities in Norway. The study was approved by the Norwegian Centre of Research Data and informed consent obtained from all participants. The transcribed interviews were analysed using narrative analysis with four main readings. Results: The participants focused on their entire life situation. They pointed to extensive changes in their life situations over a long period of time, where the need for social support persisted and changed. Three thematic characteristics of social support have been analysed: Acknowledging dramatic change; Ensuring the right help at the right time; and Self-taught social support. Conclusions: Based on the results of the study, a life course perspective, continuity, and focus on communicative competence in enhancing social support are central to the experience of social support for the next of kin of people with dementia