Developing An Integrated Care Pathway (ICP) For Lewy Body Dementia In Ireland

Abstract Background It is estimated that fewer than 5% of people with LBD (Lewy body dementia) in Ireland receive a formal diagnosis and many are misdiagnosed or have delayed diagnosis, leading to poorer outcomes. This study aimed to develop a nationally agreed integrated care pathway (ICP), co-produced with service users and fully integrated into existing/developing pathways and services. This would map patient care from initial presentation to end of life, to enhance healthcare quality, coordination, efficiency and patient satisfaction. Methods Guided by an ICP expert, a multi-stakeholder team (including service users and families), we co-produced the ICP, linked to ongoing policy and service development through Ireland’s National Dementia Service, and incorporating the DIAMOND Lewy diagnostic-management framework, adapted for Ireland. Consensus and expert opinion was gained through iterative steps, including: (1) Preliminary pathway development - to identify key care to be delivered and map care flows and activity; (2) Systematic problem identification - to understand people with LBD’s priority care elements, and most concerning problem areas; and (3) Pathway refinement - to obtain expert panel input using a modified Delphi iterative review process. Results The developed ICP is aligned with Ireland’s developing network of memory, movement disorder, and related health services and designed to reduce unwarranted variation and improve the quality of service/support for people with LBD and their families. It enables health care services to scope service provision gaps, making explicit, at a system level, the services required to effectively manage LBD. Conclusion The ICP will be the basis to improve diagnosis and care for people with LBD in Ireland. Next steps involve structured implementation, and evaluation, across health services in Ireland.