The Dimensions of Value-Ladenness in Dementia Measurement

Abstract

Dementia staging—the tracking of the progression of dementia—has become a crucial exercise in meeting the healthcare needs of an aging global population with unprecedentedly high life expectancies. Dementia-staging instruments—the tests and/or interviews used to assess the severity of dementia—are the foundation of this exercise, and provide scores used to assess patients and patient data for clinical and research ends. Because dementia-staging scores are the baseline through which disease severity is interpreted, the impact of dementia staging is felt at every level of dementia care, treatment, research, and policy. However, an overlooked aspect of dementia staging is the pervasiveness of values in tracking disease progression. From tool creation to implementation, dementia-staging instruments are entrenched in creator and practitioner values. This paper underscores the subjectivity in dementia diagnosis and tracking through an investigation of these creator and practitioner values, applying Douglas’s framework of value-guided scientific methodology for the purpose of demonstrating how ethical, social, and cognitive values have influenced four proposed steps of the dementia-staging process. This provides a foundation for future research into dementia as a pluralistic, value-laden phenomenon, paving the way for analyses of the impact of culture on the phenomenal experience of cognitive decline.