How is autonomy supported for people with dementia living in a nursing home, to what extent and under what circumstances? A realist evaluation

Abstract Background Being autonomous is important for people with dementia living in nursing homes. Their health situation however complicates the way in which they can express their preferences and wishes. Our recent realist review indicated that supporting their autonomy depends on various aspects. Objective This study aims to uncover how people with dementia, their family members and professionals experience the support of autonomy in daily care practice: what works, to what extent and under what circumstances. Design A realist evaluation was performed using qualitative methods. Methods We applied a realist approach through interviews with family members and professionals, as well as on-site observations. We performed interviews with family members and professionals and observations on site to find out how, to what extent and under what circumstances, supporting autonomy interventions work in daily practice situations. Causal assumptions were derived from the empirical data, leading to Context (C) –Mechanism (M) – Outcome (O) configurations. Results Data extraction from 24 interviews and 8 observations resulted in 19 CMO configurations on four themes: A. Autonomy and boundaries: providing maximum autonomy influenced by safety and health restrictions. B. Organization of daily care processes: the influence of attempting to increase efficiency by working routines. C. Team competences and collaboration: the possibilities of care professionals to acquire the relevant competences and an appropriate level of team collaboration. D. Interaction and relationships: the accomplishment of a working relationship between clients, their family and care professionals. Conclusion The results showed that supporting autonomy is valued highly by all stakeholders. In streamlining care processes, working routines are influential to supporting autonomy. Weighing risky choices for clients in their decision making is another factor. Our study indicates that realizing autonomy is facilitated by a capable and collaborative care team and by a working relationship between client, family members and professionals.