BMC Neurology, 2026

Systematic review of prevalence of pain among people with dementia living in the community

Abstract

Abstract

Background: Pain is common among people living with dementia (PLWD) in the community and is associated with substantial negative consequences for both individuals and caregivers; however, knowledge regarding its prevalence and assessment in a community living population with dementia remains limited. The aim of this systematic review was to examine the prevalence of pain and the pain assessment inventories used among PLWD at home.

Method: This systematic review was registered in PROSPERO (CRD420251136436) and was conducted in accordance with the PRISMA 2020 statement. The searched databases include PubMed, MEDLINE, CINAHL, APA PsycInfo, AgeLine, the Cochrane Library, and Idunn, covering articles published from January 2000 to February 2026. Quantitative observational studies that reported pain through self-report questionnaires, staff- and/or caregiver- assessments were included to define the prevalence of pain in samples or subsamples of PLWD at home. The database search identified 1,296 records, of which 25 articles from 22 studies were included in the final review.

Results: Sample sizes ranged from 36 to 1,379 PLWD at home. Pain was reported as any pain occurring within a defined timeframe, pain present on the day of assessment, pain meeting predefined severity criteria, or pain interfering with daily activities. The prevalence of pain among PLWD at home was consistently high, with higher prevalence estimates reported in studies assessing any pain compared with those applying severity or consequence-based criteria. The prevalence of any pain during the past month was found to vary between 36 and 76%. Considerable methodological heterogeneity was observed in terms of pain definitions, assessment methods, and inclusion criteria, which makes comparisons across studies difficult.
Conclusion: The overall high prevalence of pain identified in this review underscores the need for systematic and standardized pain assessment for PLWD at home.

Forfattere

Anne-S. Helvik, Büşra Nur Temür, Sverre Bergh and Kjerstin Tevik

Tilgang til artikkelen

Frontiers in Medicine, Geriatric Medicine, 2026

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

Abstract

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.

Forfattere

Maria Isabel Cardona, Clarissa Giebel, Anthony Scerri, Anthea Innes, Ninoslav Mimica, Osman Kučuk, T. Rune Nielsen, Jūratė Macijauskienė, 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

Tilgang til artikkelen