Problems Associated with the Measurement of Neuropsychiatric Symptoms of Dementia

Abstract

Neuropsychiatric symptoms (NPS) affect nearly all persons living with dementia (PLWD) at some point during the course of the disease. Given the absence of a cure or effective pharmacotherapy for dementia, it is particularly important to prevent, measure, track, and manage NPS in dementia care. Unfortunately, these efforts are hindered by inconsistent operational definitions and measurement tools for numerous neuropsychiatric symptoms. This review examines agitation, aggression, restlessness, and rejection of care as examples of NPS that are not consistently measured across research studies and scales. The results of a computerized search of peer-reviewed published studies of assessment tools measuring these NPS are reported. The differences in operational definitions and conceptual underpinnings of the four NPS are highlighted through comparisons of seven agitation measurements and four aggression measurements, and through a discussion of the inappropriate nesting of restlessness and rejection of care within co-occurring – but distinct – NPS. Universally-accepted consensus definitions of NPS are needed in order to develop accurate measurements around these definitions. Until that time, inconsistent nosology, conceptualization, and measurement will continue to confound our understanding of the prevalence and disease burden of these behaviors and hinder the development of effective interventions.