Work

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

Year: 2026

Type: article

Abstract: Background The concept of personal autonomy is fundamental to person-centred care, particularly for persons living with cognitive impairments due to conditions such as dementia. Many empirical studies investigating autonomy in persons with dementia do not provide consistent and theoretically grounded definitions of the term “autonomy,” leading to a problematic lack of conceptual clarity. Objective The aim of this study is to identify and assess definitions of autonomy in qualitative research that considers the phenomenon of autonomy in persons living with dementia. Methods 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, adult participants, and qualitative 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. Results Among 65 eligible articles, the majority (77%, n = 50) provided no definition of autonomy. Of those that did define autonomy, only 5 (8%) addressed all three dimensions of decisional autonomy, executional autonomy, and authenticity, while 6 (9%) addressed two dimensions, and 4 (6%) addressed only one dimension. Conclusions Autonomy is inconsistently and incompletely defined in empirical literature on dementia, with most studies lacking careful theoretical grounding. This conceptual ambiguity hampers research synthesis, impedes clinical application, and potentially undermines the development of effective autonomy-supporting interventions. Consistent operationalization of personal autonomy is necessary to advance research and improve care for persons living with dementia.

Source: Humanities and Social Sciences Communications

DOI: 10.1057/s41599-026-08741-4

Authors: Avery Beavers, Erin McKenzie, Andrew Douglas Heslop Stumpf

Institution: St. Jerome's University

Language: English

Topic: Ethics and bioethics in healthcare

Subfield: Public Health, Environmental and Occupational Health

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: gold

Estimated APC paid: $1,890