TY - JOUR
T1 - Positioning equity at the core of European dementia research
T2 - a pan-European co-produced perspective from the PANEUCARE consortium
AU - Cardona, Maria Isabel
AU - Giebel, Clarissa
AU - Scerri, Anthony
AU - Innes, Anthea
AU - Mimica, Ninoslav
AU - Kučuk, Osman
AU - Nielsen, T. Rune
AU - Macijauskienė, Jūratė
AU - Bartkevičiūtė, Birute
AU - Smits, Carolien
AU - Geoghegan, Carmel
AU - Moradi-Bachiller, Soraya
AU - Rokstad, Anne Marie
AU - Holmerova, Iva
AU - Trypka, Elżbieta
AU - Egervári, Ágnes
AU - Sfetcu, Raluca
AU - Taneska, Marija
AU - Hegedűs, Péter
AU - Shevchenko, Iryna
AU - Iloski, Svetlana
AU - Chatzikostopoulos, Thanos
AU - Thyrian, Jochen René
N1 - © 2026 Cardona, Giebel, Scerri, Innes, Mimica, Kučuk, Nielsen, Macijauskienė, Bartkevičiūtė, Smits, Geoghegan, Moradi-Bachiller, Rokstad, Holmerova, Trypka, Egervári, Sfetcu, Taneska, Hegedűs, Shevchenko, Iloski, Chatzikostopoulos and Thyrian. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
PY - 2026/8/31
Y1 - 2026/8/31
N2 - 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.
AB - 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.
KW - co-production
KW - dementia care
KW - equity
KW - European public health
KW - pan-European research
UR - https://www.scopus.com/pages/publications/105050400111
UR - https://www.scopus.com/pages/publications/105050400111#tab=citedBy
U2 - 10.3389/fmed.2026.1828363
DO - 10.3389/fmed.2026.1828363
M3 - Article
AN - SCOPUS:105050400111
VL - 13-2026
JO - Frontiers in Medicine
JF - Frontiers in Medicine
M1 - 1828363
ER -