Development and pilot validation of a European ethical framework for decision-making in dementia care
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.
Authors
- Ieva Stončikaitė (ORCID: https://orcid.org/0000-0003-1225-6137)
- Corinna Porteri (ORCID: https://orcid.org/0000-0001-7916-0530)
- Rodrigo Serrat (ORCID: https://orcid.org/0000-0003-3377-681X)
- Silke Schicktanz (ORCID: https://orcid.org/0000-0001-9627-752X)
- Daniel Sperling (ORCID: https://orcid.org/0000-0002-4371-7736)
- Magda Fonseca (ORCID: https://orcid.org/0000-0002-4432-7959)
- Lucca-Mathilde Thorup Ferm (ORCID: https://orcid.org/0009-0003-5941-0872)
- Therése Bielsten (ORCID: https://orcid.org/0000-0001-9021-1802)
- Linda Johansson (ORCID: https://orcid.org/0000-0001-7101-3165)
- Yeşim Işıl Ülman (ORCID: https://orcid.org/0000-0001-5601-1508)
- Olga Riklikienė (ORCID: https://orcid.org/0000-0001-5143-4288)
- Krisztina Zajdó (ORCID: https://orcid.org/0000-0002-6047-2275)
- Anthony Scerri (ORCID: https://orcid.org/0000-0002-7231-9710)
- Hilde Thygesen (ORCID: https://orcid.org/0000-0002-5942-0662)
- Bert Gordijn (ORCID: https://orcid.org/0000-0002-3686-8659)
- Carsten Hinrichsen (ORCID: https://orcid.org/0000-0003-1993-9491)
- Esra Dogru-Huzmeli
- Frederik Schou-Juul
- Elzbieta Bobrowicz-Campos
- Rosa Silva
- Joanna Rymaszewska
- Sigurd Lauridsen
- Dervla Kelly (ORCID: https://orcid.org/0000-0001-9836-5400)
- Ana Morais (ORCID: https://orcid.org/0000-0002-3036-2526)
- Kate Irving
- Gabija Jarašiūnaitė-Fedosejeva
- Regina McQuillan
- Isabel Machado Alexandre
Institutions
- Wrocław University of Science and Technology (PL)
- Lithuanian University of Health Sciences (LT)
- Universitat Pompeu Fabra (ES)
- University of Southern Denmark (DK)
- Universidade do Porto (PT)
- Neurosciences Institute (US)
- Vytautas Magnus University (LT)
- University of Malta (MT)
- University of Évora (PT)
- University of Limerick (IE)
- University of South-Eastern Norway (NO)
- Beaumont Hospital (IE)
- Acıbadem University (TR)
- Centro San Giovanni di Dio Fatebenefratelli (IT)
- Instituto de Telecomunicações (PT)
- Gedik University (TR)
- Dublin City University (IE)
- AGH University of Krakow (PL)
- University of Göttingen (DE)
- University of Coimbra (PT)
- Széchenyi István University (HU)
- University of Haifa (IL)
- Jönköping University (SE)
Publication Details
- Journal
- BMC Medical Ethics
- Published
- 2026-07-17
- DOI
- https://doi.org/10.1186/s12910-026-01551-y
- Primary Topic
- Ethics in medical practice
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Syddansk Universitet