Evidence map›Paper›PMID 42469720›Full record

ArticleBMC medical ethics2026

Development and pilot validation of a European ethical framework for decision-making in dementia care.

Frederik Schou-Juul, Bert Gordijn, Ana Morais, Magda Fonseca, Anthony Scerri, Carsten Hinrichsen, Corinna Porteri, Daniel Sperling, Dervla Kelly, Elzbieta Bobrowicz-Campos and 18 more

Abstract readValidation Study
PubMed Full text at PMC Publisher
In one paragraph

Article in BMC medical ethics, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

28 authors.

Frederik Schou-JuulNational Institute of Public Health, University of Southern Denmark, Odense, Denmark. fsch@sdu.dkas.ORCID http://orcid.org/0000-0002-1757-8875
Bert GordijnDublin City University, Dublin, Ireland.
Ana MoraisSchool of Health and Human Development, University of Évora, Évora, Portugal.
Magda FonsecaInstitute of Public Health, University of Porto, Porto, Portugal. magda.fonseca@ispup.up.pt.ORCID https://orcid.org/0000-0002-4432-7959
Anthony ScerriDepartment of Nursing, Faculty of Health Sciences, University of Malta, Msida, Malta.
Carsten HinrichsenNational Institute of Public Health, University of Southern Denmark, Odense, Denmark.
Corinna PorteriBioethics Unit, IRCCS Instituto Centro San Giovanni Di Dio Fatebenefratelli, Brescia, Italy.
Daniel SperlingDepartment of Nursing, University of Haifa, Haifa, Israel.
Dervla KellySchool of Medicine, University of Limerick, Ireland and Health Research Institute, University of Limerick, Limerick, Ireland.
Elzbieta Bobrowicz-CamposFaculty of Psychology and Education Sciences, University of Coimbra, Coimbra, Portugal.
Esra Dogru-HuzmeliPhysiotherapy and Rehabilitation Department, Istanbul Gedik University, Istanbul, Türkiye.
Gabija Jarašiūnaitė-FedosejevaDepartment of Psychology, Faculty of Social Sciences, Vytautas Magnus University, Kaunas, Lithuania.
Hilde ThygesenCentre for Health and Technology, Faculty for Health and Social Science, University of South-Eastern Norway, Drammen, Norway.
Ieva StončikaitėDepartment of Humanities, Pompeu Fabra University, Barcelona, Spain.
Isabel Machado AlexandreInstituto Universitário de Lisboa (Iscte) and Instituto de Telecomunicações, Lisbon, Portugal.
Joanna RymaszewskaDepartment of Clinical Neurosciences, Faculty of Medicine, Wroclaw University of Science and Technology, Wrocław, Poland.
Kate IrvingSchool of Nursing, Psychotherapy and Community Health, Dublin City University, Dublin, Ireland.
Krisztina ZajdóDepartment of Special Education/Speech-Language Pathology, Apáczai Csere János Faculty of Humanities, Education and Social Sciences, Széchenyi István University, The University of Győr, Győr, Hungary.
Linda JohanssonSchool of Health and Welfare, Institute of Gerontology, Jönköping University, Jönköping, Sweden.
Lucca-Mathilde Thorup FermNational Institute of Public Health, University of Southern Denmark, Odense, Denmark.
Olga RiklikieneDepartment of Nursing, Faculty of Nursing, Lithuanian University of Health Sciences, Kaunas, Lithuania.
Regina McQuillanSt. Francis Hospice and Beaumont Hospital, Dublin, Ireland.
Rodrigo SerratDepartment of Cognition, Development, and Educational Psychology, Institute of Neurosciences, University of Barcelona, Barcelona, Spain.
Rosa SilvaNursing School, University of Porto, Porto, Portugal.
Silke SchicktanzDepartment of Medical Ethics and History of Medicine, University Medical Center Goettingen, Goettingen, Germany.
Therése BielstenSchool of Health and Welfare, Institute of Gerontology, Jönköping University, Jönköping, Sweden.
Yesim Isil UlmanHistory of Medicine and Ethics Department, Acibadem University School of Medicine, Istanbul, Türkiye.
Sigurd LauridsenNational Institute of Public Health, University of Southern Denmark, Odense, Denmark.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundDementia care involves ethically complex situations across diverse clinical, social care, and policy contexts, yet practice-oriented ethical guidance remains limited. Existing ethical frameworks rarely capture the full complexity of practice across European contexts. This article presents the development and pilot external validation of an Ethical Framework for Decision-Making in Dementia Care, designed for professional caregivers.

methodsWithin COST Action CA21137 (Ethics in Dementia - EDEM), a multidisciplinary European consortium developed the framework through an iterative, deliberative, and consensus-seeking process involving workshops, online meetings, and adaptation of international bioethical norms. An exploratory and preliminary Content Validity Index (CVI) study with external experts assessed the framework's relevance, clarity, simplicity, and applicability.

resultsThe resulting principle-based framework provides non-prescriptive ethical guidance across domains including dignity, autonomy, consent, justice, solidarity, privacy, and public responsibility. The CVI assessment indicated adequate overall content validity (S-CVI/Ave = 0.85), with highest agreement for relevance (0.96) and lowest for applicability (0.75).

conclusionsThe EDEM-Framework offers a structured, exploratory, and practice-oriented contribution to clinical ethics in dementia care. It may strengthen ethical decision-making when supported by appropriate implementation strategies and ethics infrastructures.

Indexed as

Decision MakingDementiaCaregiversEuropeHumansInformed ConsentPersonal AutonomyPersonhoodPilot ProjectsPrinciple-Based EthicsRespectSocial JusticeClinical ethicsContent validityDementia careEthical decision-makingEthical frameworkEuropean healthcarePerson-centered careProfessional caregivers

Identifiers

PMID42469720
PMCPMC13491858

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.