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; 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

doi:10.1186/s12910-026-01551-y

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
, 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

School of Medicine

University of Southern Denmark
Dublin City University
University of Évora
University of Porto
University of Malta
IRCCS Centro San Giovanni di Dio Fatebenefratelli - Brescia
University of Haifa
University of Coimbra
Istanbul Gedik University
Vytautas Magnus University
University of South-Eastern Norway
Pompeu Fabra University
University Institute of Lisbon
Wrocław University of Science and Technology
Széchenyi István University
Jönköping University
Lithuanian University of Health Sciences
Royal College of Surgeons in Ireland
University of Barcelona
University of Göttingen
Acibadem Mehmet Ali Aydinlar Universitesi

Research output: Contribution to journal › Article › peer-review

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.

Original language	English
Article number	171
Journal	BMC Medical Ethics
Volume	27
Issue number	1
DOIs	https://doi.org/10.1186/s12910-026-01551-y
Publication status	Published - Dec 2026

Keywords

Clinical ethics
Content validity
Dementia care
Ethical decision-making
Ethical framework
European healthcare
Person-centered care
Professional caregivers

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10.1186/s12910-026-01551-y

Cite this

Schou-Juul, F., Gordijn, B., Morais, A., Fonseca, M., Scerri, A., Hinrichsen, C., Porteri, C., Sperling, D., Kelly, D., Bobrowicz-Campos, E., Dogru-Huzmeli, E., Jarašiūnaitė-Fedosejeva, G., Thygesen, H., Stončikaitė, I., Alexandre, I. M., Rymaszewska, J., Irving, K., Zajdó, K., Johansson, L., ... Lauridsen, S. (2026). Development and pilot validation of a European ethical framework for decision-making in dementia care. BMC Medical Ethics, 27(1), Article 171. https://doi.org/10.1186/s12910-026-01551-y

@article{24c8d10f004d493ea8c46cf58f847bd5,

title = "Development and pilot validation of a European ethical framework for decision-making in dementia care",

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 {\textendash} 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{\textquoteright}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 = "Clinical ethics, Content validity, Dementia care, Ethical decision-making, Ethical framework, European healthcare, Person-centered care, Professional caregivers",

author = "Frederik Schou-Juul and Bert Gordijn and Ana Morais and Magda Fonseca and Anthony Scerri and Carsten Hinrichsen and Corinna Porteri and Daniel Sperling and Dervla Kelly and Elzbieta Bobrowicz-Campos and Esra Dogru-Huzmeli and Gabija Jara{\v s}iūnaitė-Fedosejeva and Hilde Thygesen and Ieva Ston{\v c}ikaitė and Alexandre, \{Isabel Machado\} and Joanna Rymaszewska and Kate Irving and Krisztina Zajd{\'o} and Linda Johansson and Ferm, \{Lucca Mathilde Thorup\} and Olga Riklikiene and Regina McQuillan and Rodrigo Serrat and Rosa Silva and Silke Schicktanz and Ther{\'e}se Bielsten and Ulman, \{Yesim Isil\} and Sigurd Lauridsen",

note = "Publisher Copyright: {\textcopyright} The Author(s) 2026.",

year = "2026",

month = dec,

doi = "10.1186/s12910-026-01551-y",

language = "English",

volume = "27",

journal = "BMC Medical Ethics",

issn = "1472-6939",

number = "1",

}

Schou-Juul, F, Gordijn, B, Morais, A, Fonseca, M, Scerri, A, Hinrichsen, C, Porteri, C, Sperling, D, Kelly, D, Bobrowicz-Campos, E, Dogru-Huzmeli, E, Jarašiūnaitė-Fedosejeva, G, Thygesen, H, Stončikaitė, I, Alexandre, IM, Rymaszewska, J, Irving, K, Zajdó, K, Johansson, L, Ferm, LMT, Riklikiene, O, McQuillan, R, Serrat, R, Silva, R, Schicktanz, S, Bielsten, T, Ulman, YI & Lauridsen, S 2026, 'Development and pilot validation of a European ethical framework for decision-making in dementia care', BMC Medical Ethics, vol. 27, no. 1, 171. https://doi.org/10.1186/s12910-026-01551-y

TY - JOUR

T1 - Development and pilot validation of a European ethical framework for decision-making in dementia care

AU - Schou-Juul, Frederik

AU - Gordijn, Bert

AU - Morais, Ana

AU - Fonseca, Magda

AU - Scerri, Anthony

AU - Hinrichsen, Carsten

AU - Porteri, Corinna

AU - Sperling, Daniel

AU - Kelly, Dervla

AU - Bobrowicz-Campos, Elzbieta

AU - Dogru-Huzmeli, Esra

AU - Jarašiūnaitė-Fedosejeva, Gabija

AU - Thygesen, Hilde

AU - Stončikaitė, Ieva

AU - Alexandre, Isabel Machado

AU - Rymaszewska, Joanna

AU - Irving, Kate

AU - Zajdó, Krisztina

AU - Johansson, Linda

AU - Ferm, Lucca Mathilde Thorup

AU - Riklikiene, Olga

AU - McQuillan, Regina

AU - Serrat, Rodrigo

AU - Silva, Rosa

AU - Schicktanz, Silke

AU - Bielsten, Therése

AU - Ulman, Yesim Isil

AU - Lauridsen, Sigurd

PY - 2026/12

Y1 - 2026/12

N2 - 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.

AB - 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.

KW - Clinical ethics

KW - Content validity

KW - Dementia care

KW - Ethical decision-making

KW - Ethical framework

KW - European healthcare

KW - Person-centered care

KW - Professional caregivers

UR - https://www.scopus.com/pages/publications/105047801126

U2 - 10.1186/s12910-026-01551-y

DO - 10.1186/s12910-026-01551-y

M3 - Article

C2 - 42469720

AN - SCOPUS:105047801126

SN - 1472-6939

VL - 27

JO - BMC Medical Ethics

JF - BMC Medical Ethics

IS - 1

M1 - 171

ER -

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

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