Dementia Care ethics, Structural Violence and unmet needs: a qualitative cross-country study

Abstract

Despite advancements in dementia care policies, people living with dementia continue experiencing significant unmet needs, while health and social care professionals encounter complex ethical challenges shaped by healthcare systems, cultural attitudes, and resource availability. Objective This cross-country comparison study seeks to compare and describe the ethical knowledge, attitudes, and decision-making processes of healthcare professionals across seven countries, with a specific focus on how healthcare system structures, cultural frameworks, and ethical challenges interact in providing dementia care. Methods Applying Structural Violence Theory, this was a qualitative cross-country study involving 121 professionals, including doctors, nurses, and social workers, from Albania, Estonia, Ireland, Israel, Moldova, Portugal, and Turkey. Focus group discussions using semi-structured interviews were conducted between February and July 2024, with interpretative phenomenological analysis at national level and cross-country meta-thematic analysis. Results Three meta-themes emerged from the study: Conceptualizing Dementia Care; Good Care, Clinical Practice, and Legal Requirements; and Providing Care Under System Constraints. Findings highlight disparities in care access, emotional and financial burden on family caregivers, tensions between medical compliance and autonomy, and collaboration challenges. Ethical dilemmas were most acute in resource-limited settings while some challenges appeared across all countries. Conclusions Healthcare system structures substantially shape ethical challenges in dementia care, requiring strengthened infrastructures, improved interdisciplinary collaboration, and dementia-specific ethical frameworks. Health policy on dementia care should shift from merely regulating individual behavior to mandating system-level conditions that enable ethical care.