”If we can get through this week” – experiences of formal dementia home and community care in Ireland.

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. The study explored the personal experiences, and perceived barriers or facilitators in accessing formal home- and community-based health and social care systems from the perspectives of people with dementia, informal caregivers, and healthcare professionals. An exploratory qualitative design with purposive sampling was used. Two focus groups were conducted with people with dementia already using, or having previously tried to access, formal care (n=8); three with informal caregivers of different ages and with different relationships to the person with dementia (n=16); and three with healthcare professionals from a variety of backgrounds (n=18). Discussions followed an agreed structure, were tape-recorded, transcribed, and analysed using inductive content analysis. Common themes emerged across the groups with regard to: (1) Understanding Care Needs, (2) Accessing Services and Service Availability, (3) Education and Awareness, (4) Capacity and Rights, (5) Best Practice, (6) The Impact of a Dementia Diagnosis and (7) The Impact of Caring. Conflicting views were evident between the wishes of people with dementia and their caregivers (formal and informal), and also amongst healthcare professionals regarding the most appropriate time for care. A theme of Problems Resulting from Poor Care also emerged from the healthcare professional groups. These findings are interpreted in the context of Irish health and social care structures and recommendations are made in light of the recent publication of the Irish National Dementia Strategy. The findings 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 people with dementia, their informal caregivers, and health professionals alike