From Fragmentation to Reform: Mapping the Lived Experience of Lewy Body Dementia Care in Ireland

Abstract Background Lewy Body Dementia (LBD) is the second most common form of dementia, yet it remains under-recognised and under-diagnosed, particularly in Ireland, where no national clinical guidelines or care pathways exist. This study represents the first comprehensive exploration of LBD diagnostic and post-diagnostic pathways in Ireland, drawing on the lived experiences of LBD patients, care partners, and healthcare professionals (HCPs) to identify systemic gaps and opportunities for reform. Methods A qualitative interpretive phenomenological approach was employed to conduct semi-structured interviews with 12 LBD patients, 17 care partners, and 23 healthcare professionals, from both urban and rural areas, across various disciplines, including neurology, psychiatry, geriatric medicine, nursing, allied health, and general practice. Thematic analysis was conducted using Colaizzi’s method, with a focus on diagnosis, post-diagnostic support, and service navigation. Results Five key themes emerged: (1) Recognition and Diagnosis – delays, misdiagnoses, and unclear referral routes were prevalent; (2) Systemic Fragmentation and Informal Anchors – families often coordinated care in the absence of structured support; (3) Emotional and Practical Burden of Care – care partners reported significant exhaustion, isolation, and financial strain; (4) Inequitable Access and Training Gaps – rural, young-onset, and under-65 cases faced substantial access barriers, compounded by inconsistent LBD-specific training; and (5) Call for Awareness and Structural Change – participants emphasised the need for standardised care pathways, specialist roles, and integrated, age-inclusive services. Conclusion This study highlights the distinct challenges faced by LBD patients and their care partners in Ireland, underscoring the need for systemic reform to address inequities in diagnosis and care. It highlights the critical importance of LBD-specific training for healthcare professionals, developing coordinated care models, and implementing policy changes to better support patients and frontline professionals. By centering the lived experiences of patients and care partners, these findings provide a foundation for the design of more inclusive, responsive, and person-centered dementia services in Ireland.