BMC medical ethics · 2026
Development and pilot validation of a European ethical framework for decision-making in dementia care.
СтатьяВалидационное исследованиеНазвание и аннотация: Перевод в очереди
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Schou-Juul Frederik, Gordijn Bert, Morais Ana, Fonseca Magda, Scerri Anthony, Hinrichsen Carsten, Porteri Corinna, Sperling Daniel, Kelly Dervla, Bobrowicz-Campos Elzbieta, Dogru-Huzmeli Esra, Jarašiūnaitė-Fedosejeva Gabija, Thygesen Hilde, Stončikaitė Ieva, Alexandre Isabel Machado, Rymaszewska Joanna, Irving Kate, Zajdó Krisztina, Johansson Linda, Ferm Lucca-Mathilde Thorup, Riklikiene Olga, McQuillan Regina, Serrat Rodrigo, Silva Rosa, Schicktanz Silke, Bielsten Therése, Ulman Yesim Isil, Lauridsen Sigurd
Аннотация
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.
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.