Experiences of providing formal home and community dementia care in ireland: advocating for a holistic systemic approach

Background: Access to formal dementia care services varies widely within and across European countries. This paper presents Irish data from one study within the Access to Timely Formal Care (Actifcare) JPND-funded research project. This study explored the professional experiences, and perceived barriers and facilitators in accessing formal home- and community-based health and social care from the perspectives of healthcare professionals and expert stakeholders in a unique position to influence dementia policy in Ireland. Methods: An exploratory qualitative design with purposive sampling was used. Three focus groups were conducted with healthcare professionals from a variety of backgrounds (n=18; years experience M=11.35, SD=7.22). One group took place in a rural setting, one in south and one in north Dublin. Seven interviews with policy and political decision makers also took place. Discussions followed an agreed structure, were audio-recorded, transcribed, and analysed using inductive content analysis. Results: Narratives revealed a wide range of themes describing barriers and facilitators for the use of formal dementia care at (1) an individual level – relating to every person involved, such as needs-focused care and capacity and rights; (2) a system level – relating to the health and social care system in Ireland, such as service design, service availability and case management; and (3) overarching aspects that were important on both levels, such as education, awareness, influence and community engagement. Conflicting views emerged between healthcare professionals regarding the most appropriate time for care, and among experts regarding the definition and location of any case management support. Conclusions: These findings are interpreted in the context of the 2014 National Dementia Strategy and they support the increasing body of evidence that highlights the very clear gaps that exist between the formal home- and community-based care that is available in Ireland, and the care advocated for by health professionals and policy makers alike