The fragmentation of health and social care for people with dementia and their carers: An 8-European-country qualitative study.

Abstract

Background: People with dementia and their carers often fail to receive the right care and can be delayed receiving the right diagnosis. A disconnect between health and social care systems and professionals is one of the main reasons. However, it remains unclear how health and social care services fail to connect, and what examples of good practice may support improved care service connectivity more widely. Methods: This qualitative study involved semi-structured interviews with health and social care professionals, unpaid carers, and people with dementia from eight European countries (Czech Republic, Ireland, Italy, Lithuania, Netherlands, Poland, Portugal, United Kingdom). Data were analysed by six researchers using framework analysis guided by the Dementia Inequalities Model as underpinning theory. Results: A total of 86 participants took part between October 2025 and February 2026, including health (n=22) and social care professionals (n=13), unpaid carers (n=37), and people with dementia (n=14). Five themes were generated: (1) Lack of adequate formal structures of connection; (2) Silo working; (3) Lack of knowledge and awareness; (4) Impacts on unpaid carers; (5) Solutions to care fragmentation. There were notable similarities across countries and care infrastructures, including health care professionals often working in silo within their care sector, whilst solutions varied across countries. Conclusions: This is the first study to have shown detailed care fragmentation in dementia across Europe. Some solutions to support linked up care delivery need to be explored in greater detail, with a potential of adaptation to other country settings.