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

Area of Science:

• Gerontology
• Bioethics
• Healthcare Ethics

Background:

• Ethical guidance for dementia care is limited, especially across diverse European contexts.
• Existing frameworks often fail to capture the full complexity of practice.
• This study introduces a novel framework tailored for professional caregivers in dementia care settings.

Purpose of the Study:

• To develop and pilot-test an Ethical Framework for Decision-Making in Dementia Care.
• To provide practice-oriented ethical guidance for professional caregivers.
• To assess the framework's content validity, relevance, clarity, simplicity, and applicability.

Main Methods:

• A multidisciplinary European consortium developed the framework using iterative, deliberative, and consensus-seeking processes.
• Methods included workshops, online meetings, and adaptation of international bioethical norms.
• An exploratory Content Validity Index (CVI) study with external experts was conducted.

Main Results:

• The principle-based framework offers guidance on dignity, autonomy, consent, justice, solidarity, privacy, and public responsibility.
• The framework achieved adequate overall content validity (S-CVI/Ave = 0.85).
• Highest expert agreement was for relevance (0.96), and lowest for applicability (0.75).

Conclusions:

• The EDEM-Framework provides a structured, exploratory, and practice-oriented contribution to clinical ethics in dementia care.
• It has the potential to strengthen ethical decision-making for professional caregivers.
• Effective implementation strategies and ethics infrastructures are crucial for maximizing its impact.