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. Our recent realist review indicated that supporting their autonomy depends on various aspects.

Objective

This study aimed to uncover how people with dementia, their family members and care and treatment 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 care and treatment professionals, as well as on-site observations: due to their cognitive condition we could not exchange mutual views with residents directly. We performed these interviews 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 residents, their family and care and treatment professionals.

Conclusion

The results showed that supporting autonomy was valued highly by all stakeholders. In streamlining care processes, working routines were influential to supporting autonomy. Weighing risky choices for people with dementia in their decision making was another factor. Our study indicated that realizing autonomy is facilitated by a capable and collaborative team of professionals and by a working relationship between persons living with dementia, family members and professionals.