Views on dementia among informal caregivers of people with dementia: A scoping review and thematic analysis of qualitative studies

BackgroundAlzheimer's disease is common in later life and affects the person with dementia as well as their family. As the disease progresses, declining functions of activities of daily living increase dependence on relatives for support, who can become caregivers.ObjectiveTo summarize the current state of knowledge regarding caregivers' views on Alzheimer's disease and other types of dementia, and to identify overarching themes.MethodsWe conducted a scoping review using PRISMA guidelines. Inclusion criteria were: a) qualitative studies or qualitative sections of mixed-methods studies about views on dementia among informal caregivers, b) publication between 2013 and 2023, c) publication in a peer-reviewed journal, d) English or German language. The search was carried out in five scientific databases (MEDLINE, PsycInfo, PSYNDEX, CINHAL, Web of Science). Information on authors, years, settings, participants, aims, methods, type of analysis, and results were extracted. Using reflexive thematic analysis, themes of views on dementia reported in the given articles were summarized.ResultsWe identified 42 relevant studies reporting views on dementia in informal caregivers and constructed seven themes: "Dementia as natural cognitive decline", "Dementia as caregiver burden", "Dementia as stigmatized experience", "Dementia as transition in relationship dynamics", "Dementia as uncertainty", "Dementia as enriching experience" and "Dementia as self-inflicted vs. externally determined".ConclusionsViews on dementia among informal caregivers encompass complex, multi-dimensional attitudes and perceptions warranting a nuanced dementia discourse and offering various starting points for interventions. "Dementia as transition in relationships dynamics" emerged as an especially important topic requiring more attention in dementia research.