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. 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. 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). 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.
Frederik Schou-juul, Bert Gordijn, Ana Morais et al.· BMC Medical Ethics· 0 citations
Dance-based interventions are increasingly recognised as valuable psychosocial approaches to support the wellbeing and social participation of people living with dementia. However, existing research has largely focused on outcomes, with limited attention to how such programmes are facilitated and experienced in practice. This study explored how dance facilitators understand and navigate the multi-level influences shaping the organisation, delivery and perceived impact of dance sessions for people living with dementia and their informal caregivers. An exploratory descriptive qualitative design was adopted, using semi-structured interviews with six facilitators involved in a dance-based programme in Malta. Data were analysed using reflexive thematic analysis, guided by a socio-ecological-relational framework. Findings showed that dance facilitation is a relational and adaptive practice embedded within interacting individual, interpersonal, organisational, community and societal contexts. Facilitators continuously adjusted activities in response to participants' cognitive, physical and emotional needs, using embodied and non-verbal approaches to support engagement. Relational processes, including shared movement and caregiver involvement, were central to fostering connection and inclusion. However, participation and sustainability were shaped by organisational environments, accessibility and persistent stigma, highlighting constraints beyond the control of facilitators. These findings emphasise that the value of dance lies in how it is enacted in practice, underscoring the need for supportive contexts.
A. Scerri, C. Scerri· Dementia· 0 citations
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