My inner barometer: an explorative co-research study on the development of the embodied cognition in dementia assessment scales (EmDAS)

When psychosocial interventions for persons with dementia are examined, standardized screening tools are often used. These tools are designed to quantify symptom reduction and may therefore overlook the changes and benefits that persons with dementia themselves find important. This addresses the need for tools that are developed from the perspective of persons with dementia themselves in order to integrate the nuanced benefits of psychosocial interventions that they value. There are conflicting results about whether persons with dementia can complete self-report scales, still, the aim of this study was to outline the detailed process of the development of a dementia-specific self-reported outcome measure. The research was motivated by a person with dementia and unfolded in an inductive, iterative and explorative co-research design in seven phases. Each phase covered different research methods and in total included 36 participants and stakeholders. The participants' perspectives and ideas were prioritized with the overall goal to enhance and improve outcomes for psychosocial interventions that are co-created and balanced between deficits and strengths and based on what persons with dementia considered the most meaningful outcomes. The result was a co-constructed self-report outcome measure covering eight items of embodied cognition (Body, Emotions, Language, Overview, Empathy, Memory, Imagination, Meaning). The Embodied Cognition in Dementia Assessment Scales (EmDAS) shows promising validity and sensitivity, is relevant for further psychometric testing, and may provide a valuable contribution to inclusive health care research.