Development and pilot validation of a European ethical framework for decision-making in dementia care. BMC Med Ethics 27, 171 (2026).

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Schou-Juul F., Gordijn B., Işıl Ülman F. Y., Lauridsen S.

BMC MEDICAL ETHICS, cilt.27, sa.171, ss.1-15, 2026 (SCI-Expanded, SSCI, Scopus)

  • Yayın Türü: Makale / Tam Makale
  • Cilt numarası: 27 Sayı: 171
  • Basım Tarihi: 2026
  • Doi Numarası: 10.1186/s12910-026-01551-y
  • Dergi Adı: BMC MEDICAL ETHICS
  • Derginin Tarandığı İndeksler: Biomedical Reference Collection: Corporate Edition (EBSCO), Health Research Premium Collection (ProQuest), Scopus, Science Citation Index Expanded (SCI-EXPANDED), Social Sciences Citation Index (SSCI), IBZ Online, CINAHL, EMBASE, MEDLINE, Psycinfo, Directory of Open Access Journals
  • Sayfa Sayıları: ss.1-15
  • Açık Arşiv Koleksiyonu: AVESİS Açık Erişim Koleksiyonu
  • Acıbadem Mehmet Ali Aydınlar Üniversitesi Adresli: Evet

Özet

Schou-Juul, F., Gordijn, B., Morais, A. et al. Development and pilot validation of a European ethical framework for decision-making in dementia care. BMC Med Ethics 27, 171 (2026). https://doi.org/10.1186/s12910-026-01551-y 

Frederik Schou-Juul, Bert Gordijn, Ana Morais, Magda Fonseca, Anthony Scerri, Carsten Hinrichsen, Corinna Porteri, Daniel Sperling, Dervla Kelly, Elzbieta Bobrowicz-Campos, Esra Dogru-Huzmeli, Gabija Jarašiūnaitė-Fedosejeva, Hilde Thygesen, Ieva Stončikaitė, Isabel Machado Alexandre, Joanna Rymaszewska, Kate Irving, Krisztina Zajdó, Linda Johansson, Lucca-Mathilde Thorup Ferm, Olga Riklikiene, Regina McQuillan, Rodrigo Serrat, Rosa Silva, Silke Schicktanz, Therése Bielsten, Yesim Isil Ulman & Sigurd Lauridsen, Development and pilot validation of a European ethical framework for decision-making in dementia care. BMC Med Ethics 27, 171 (2026). https://doi.org/10.1186/s12910-026-01551-y 


Abstract

Background Dementia 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.

Methods Within 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. 

Results The 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).

Conclusions The 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. 


Keywords Dementia care, Ethical decision-making, Clinical ethics, Ethical framework, Content validity, Professional

caregivers, Person-centered care, European healthcare