“It’s the one-size-fits-all approach”: differing experiences of formal dementia home and community care in Ireland.

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. 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. Methods: 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. The first took place with older participants who attended a dementia-specific day centre in a central Dublin neighbourhood (n=3; mean age = 83.7). The second comprised of younger participants with early onset dementia from urban and rural locations in Ireland (n=4, mean age = 57.3). Discussions followed an agreed structure, were tape-recorded, transcribed, and analysed using inductive content analysis. Results: Common themes emerged across the groups with regard to: (1) The Impact of a Dementia Diagnosis, (2) Service Availability and Acceptability, (3) Education and Awareness, (4) Capacity and Rights, (5) The Impact of Caring on the family, and (6) Best Practice. Although participants differed in their awareness of the personal impact of dementia, all expected to remain living at home and in control of their lives for as long as possible. Two diverse views emerged in relation to service availability and two distinctly different experiences with formal dementia services were evident. Younger narratives focused on barriers to care and experiences were predominately negative, while positive experiences were more common among older participants who particularly enjoyed opportunities for social interaction. Conclusions: The results 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 an increasingly diverse population of people living with dementia. 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