Treatment priorities from the perspectives of people with dementia with Lewy bodies: a reflexive thematic analysis

Introduction Treatment priorities in dementia with Lewy bodies (DLB) have important implications for outcome selection and measurement in clinical trials and for person-centered care. The reasons underlying these priorities remain unclear. This study explored these reasons from the perspectives of people with DLB. Methods A qualitative component was embedded within a larger stated-preference study. As part of orally administered surveys, eight people with DLB answered an open-ended question regarding which symptoms they considered most important to treat and why. Responses were analyzed using reflexive thematic analysis. Results Six themes were identified: (1) Cognitive and functional decline as a threat to autonomy, safety, and self, (2) Motor symptoms and pain as barriers to identity, activity, and wellbeing, (3) Autonomic symptoms as sources of stigma, shame, and disruption, (4) Sleep as a foundation for functioning in daily life, (5) Neuropsychiatric and psychological symptoms and the erosion of connection, motivation, and self, and (6) Navigating symptom complexity and uncertainty. Discussion Symptoms were prioritized for their frequency and severity, and for the ways in which they threatened valued aspects of life, such as autonomy, safety, intimacy, and sense of self. Participants’ reasoning therefore drew attention to relatively understudied dimensions of living with DLB. Although the sample was modest, participants’ accounts provided rich insights into the lived experience of DLB and its consequences for this under-researched population. The findings provide evidence to guide outcome selection in trials and highlight the need for outcome measures that capture multidimensional domains reflecting fundamental human needs, ideally through DLB-specific instruments.