Widening the scope of social science research on the dementias: the importance of Lewy Body Dementia

Lewy Body Dementia (LBD) is an umbrella diagnostic label which includes both Dementia with Lewy Bodies (DLB) and Parkinson’s Disease Dementia (PDD). Research on LBD has overwhelmingly adopted a biomedical, clinical perspective, while the field of dementia studies has often orientated towards singular, monolithic understandings of dementia. Accordingly, diagnostic categories, sociotechnical constitution, or lived experience of dementia subtypes of have not been adequately disaggregated and conceptualised. The heterogeneity of LBD’s aetiology, presentation, and management - located across historically constituted medical specialities underscore the need to build, critique, and extend conventional social sciences approaches to neurodegenerative illness and health, with the aim of ultimately improving health and care. Here we review existing social science literature regarding LBD, and propose an agenda for interdisciplinary research on the condition. First, we map the social arena of research on LBD and its relationship with existing Dementia and Parkinson’s Disease research. Second, we examine the clinical and service barriers and facilitators to diagnosis and management of LBD. Third, we analyse the role lived experience might play in informing social science research on LBD. We conclude by highlighting 10 key priorities around which a social scientific, and in particular a sociologically-informed, approach to LBD might coalesce.