Positioning equity at the core of European dementia research: a pan-European co-produced perspective from the PANEUCARE consortium
Year: 2026
Type: article
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.
Source: Frontiers in Medicine
Authors: 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
Institutions: German Center for Neurodegenerative Diseases, German Center for Neurodegenerative Diseases (DZNE) Dresden, University of Liverpool, NIHR Applied Research Collaboration North West Coast, University of Malta, University of the Highlands and Islands, University of Zagreb, Copenhagen University Hospital, Rigshospitalet, Lithuanian University of Health Sciences, Hospital of Lithuanian University of Health Sciences Kaunas Clinics, Alzheimer Europe, Sykehuset i Vestfold, Norwegian National Centre for Ageing and Health, Charles University, Wroclaw Medical University, Spiru Haret University, National School of Public Health, Management and Professional Development, Alzheimer's Society, Greek Association of Alzheimer's Disease and Related Disorders, Universitätsmedizin Greifswald
Language: English
Subfield: Psychiatry and Mental health
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $3,801
Award: G7598654340
OpenAlex ID: W7204810116