Lived experiences of Lewy body dementia diagnosis and care in Ireland

Lewy Body dementia (LBD) is a common yet under-recognised dementia that presents distinct diagnostic and care complexities. This qualitative study explored experiences of LBD diagnosis and care through semi-structured interviews with 17 care partners and 23 healthcare professionals across urban and rural regions in Ireland. Participants described diagnostic delays and misdiagnoses linked to limited clinical awareness, alongside fragmented service provision that was frequently navigated through informal support networks. Care partners highlighted substantial emotional and financial impacts and a lack of clear guidance following diagnosis, while healthcare professionals emphasised system-level constraints and unmet training needs. Notably, both groups articulated clear, actionable priorities, including improved diagnostic pathways and more integrated, age-inclusive services. While several challenges overlapped with other dementias, participants emphasised the fluctuating symptom profile, frequent misattribution of early symptoms, and gaps in LBD-specific expertise as particularly important. Although situated in the Irish context, these findings offer transferable insights to inform service development and equity-focused reforms for non-Alzheimer’s dementias internationally.