The operationalization of autonomy in qualitative studies of people living with dementia: a scoping review

Abstract The concept of personal autonomy is fundamental to person-centred care, particularly for people living with cognitive impairments due to conditions such as dementia. Many empirical studies investigating autonomy in people living with dementia do not provide consistent and theoretically grounded definitions of the term “autonomy,” leading to a problematic lack of conceptual clarity. The aim of this study is to identify and evaluate how autonomy is defined and operationalized in qualitative research involving people living with dementia or mild cognitive impairment. A scoping review was completed in PubMed, Embase (Ovid), Scopus and APA PsycNet. Keywords included terms within the content areas of dementia and autonomy. Inclusion criteria were as follows: mentions of autonomy, participant population with cognitive impairment, and qualitative or mixed-methods methodology. Included studies were assessed according to whether descriptions of autonomy (if provided) addressed important dimensions of autonomy, namely decisional autonomy, executional autonomy, and authenticity. Among 63 eligible articles, the majority (76%, n = 48) provided no definition of autonomy. Of those that did define autonomy, 5 (8%) addressed all three dimensions of decisional autonomy, executional autonomy, and authenticity, while 6 (10%) addressed two dimensions, and 4 (6%) addressed one dimension. Decisional autonomy was the most commonly addressed dimension, while authenticity was the least represented. Notably, among studies that did provide a definition ( n = 15), 73% ( n = 11) addressed two or three dimensions, suggesting substantial convergent alignment with a multidimensional conceptualization even in the absence of a shared framework. Autonomy is inconsistently and incompletely defined in empirical literature on dementia, with most studies lacking careful theoretical grounding. This conceptual ambiguity may hamper research synthesis, impede clinical application, and potentially undermine the development of effective autonomy-supporting interventions. Consistent operationalization of personal autonomy is necessary to advance research and improve care for people living with dementia.