Cardona, MI, Giebel, C 
ORCID: 0000-0002-0746-0566, Scerri, A, Innes, A, Mimica, N, Kučuk, O, Nielsen, TR, Macijauskienė, J, Bartkevičiūtė, B, Smits, C et al (show 13 more authors)
(2026)
Positioning equity at the core of European dementia research: a pan-European co-produced perspective from the PANEUCARE consortium
Frontiers in Medicine, 13.
1828363-.
ISSN 2296-858X, 2296-858X
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Text
Manuscript_Positioning Paper_Cardona et al..pdf - Author Accepted Manuscript Available under License Creative Commons Attribution. Download (1MB) | Preview |
Abstract
Dementia care across Europe is characterized by substantial regional disparities in research participation, funding, and care practices, which challenge the development of equitable and inclusive research agendas. The PANEUCARE consortium adopted a pan-European, co-produced approach that integrates professional expertise with the perspectives of people living with dementia and caregivers to identify priorities for a more equitable dementia research landscape. Insights were generated through two workshops with dementia professionals and consultation groups involving people living with dementia and caregivers, followed by deliberative synthesis to explore common challenges, regional barriers, and shared research priorities. Participants highlighted persistent issues including workforce shortages, delayed diagnosis, fragmented care pathways, caregiver burden, and the underrepresentation of Southern and Eastern European contexts in research. At the same time, examples of local innovation, such as community-based services, cross-sector collaboration, and the use of digital tools, demonstrated context-specific resilience and opportunities for cross-regional learning. Priority areas for future research included strengthening cross-regional collaboration, addressing workforce development, improving culturally sensitive and post-diagnostic care, enhancing support for caregivers, and promoting more inclusive participation in research. These insights informed the development of the EQUITABLE framework (Equity, Quality, Urgency, Involvement, Transdisciplinary collaboration, Adaptability, Budget-consciousness, Linguistic and cultural sensitivity, and Engagement), which provides actionable guidance for designing inclusive and context-sensitive dementia research across Europe. By bringing together professional expertise and lived experience, PANEUCARE highlights how Europe's diversity in dementia care can be leveraged as a resource for shared learning and policy development, supporting a more equitable, sustainable, and responsive European dementia research landscape. The author(s) would like to thank the PANEUCARE Consortium, the European Working Group of People with Dementia (EWGPWD), and the European Dementia Carers Working Group (EDCWG) for their invaluable insights and collaboration. Special thanks to Alzheimer Europe for coordinating consultation groups and facilitating multi-stakeholder engagement. The author(s) also acknowledge the support of the EU Joint Programme on Neurodegenerative Disease Research (JPND) in funding and enabling the PANEUCARE initiative. Finally, gratitude is extended to all people living with dementia, caregivers, researchers, and policymakers who contributed their perspectives, without whom this position paper would not have been possible
| Item Type: | Article |
|---|---|
| Uncontrolled Keywords: | European public health, co-production, dementia care, equity, pan-European research |
| Divisions: | Faculty of Health & Life Sciences Faculty of Health & Life Sciences > Inst. Population Health Faculty of Health & Life Sciences > Inst. Population Health > Primary Care & Mental Health |
| Depositing User: | Symplectic Admin |
| Date Deposited: | 17 Aug 2026 10:15 |
| Last Modified: | 27 Sep 2026 08:16 |
| DOI: | 10.3389/fmed.2026.1828363 |
| Related Websites: | |
| URI: | https://livrepository.liverpool.ac.uk/id/eprint/3199977 |
| Disclaimer: | The University of Liverpool is not responsible for content contained on other websites from links within repository metadata. Please contact us if you notice anything that appears incorrect or inappropriate. |
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