Mapping Lived Experiences of Lewy Body Dementia Care in Ireland

Lewy Body dementia (LBD) is a common yet under-recognised form of dementia, presenting significant diagnostic and care challenges. In Ireland, where formal LBD-specific guidelines and pathways are absent, care partners and healthcare professionals described navigating care through fragmented, ad hoc systems. This qualitative study explored the lived experience of LBD care through semi-structured interviews with 17 care partners and 23 healthcare professionals across urban and rural regions. Thematic analysis revealed five interconnected themes related to both groups: (1) delays and misdiagnoses due to low clinical awareness; (2) systemic fragmentation mitigated by informal support networks; (3) emotional and financial burdens disproportionately carried by care partners; (4) inequities in service access, particularly for rural and younger families; and (5) strong calls for structural reform from both groups. Specifically care partners emphasised the emotional toll and lack of guidance post-diagnosis, while healthcare professionals highlighted system-level constraints and training gaps. Both groups converged in their advocacy for clearer diagnostic pathways and integrated, age-inclusive services. Although grounded in the Irish context, these findings reflect broader global challenges in LBD care and offer transferable lessons for other countries grappling with inequity and underdiagnosis in non-Alzheimer’s dementias.