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Positioning equity at the core of European dementia research: a pan-European co-produced perspective from the PANEUCARE consortium

  • Maria Isabel Cardona
  • , Clarissa Giebel
  • , Anthony Scerri
  • , Anthea Innes
  • , Ninoslav Mimica
  • , Osman Kučuk
  • , T. Rune Nielsen
  • , Jūratė Macijauskienė
  • , Birute Bartkevičiūtė
  • , Carolien Smits
  • , Carmel Geoghegan
  • , Soraya Moradi-Bachiller
  • , Anne Marie Rokstad
  • , Iva Holmerova
  • , Elżbieta Trypka
  • , Ágnes Egervári
  • , Raluca Sfetcu
  • , Marija Taneska
  • , Péter Hegedűs
  • , Iryna Shevchenko
  • Svetlana Iloski, Thanos Chatzikostopoulos, Jochen René Thyrian

科研成果: Article › 同行评审

摘要

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.

源语言English
文章编号1828363
期刊Frontiers in Medicine
卷13-2026
DOI
出版状态Published - 31 8月 2026

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