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Background <p>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.</p> Methods <p>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.</p> Results <p>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).</p> Conclusions <p>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.</p>

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

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年7月17日

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  • 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

摘要

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.