NEEDS – Navigating Ethical Issues in Community-Based Dementia Care

Dementia care is widely recognized as ethically complex. 91% of community-based professional caregivers report encountering ethical dilemmas in their work. These dilemmas arise when values such as autonomy, dignity, and well-being conflict with safety and care responsibilities. Despite the scale of the challenge, there are currently no theoretically grounded and empirically robust frameworks to guide ethical decision-making in community dementia care. Approximately 96,000 people live with dementia in Denmark, and this number is expected to increase substantially by 2035. Many caregivers report a need for stronger ethical support. NEEDS addresses this gap by developing a context-sensitive and theoretically grounded procedure for ethical shared decision-making in community-based dementia care.

Purpose

The aim of NEEDS is to develop a context-sensitive and theoretically grounded procedure for addressing value conflicts and enabling reasonable shared ethical decision-making in community-based dementia care.

The project has three objectives:

1. To explore how ethical dilemmas and partial autonomy are understood and negotiated by professional caregivers, family members, and people living with dementia.
2. To develop a revised, context-sensitive concept of partial autonomy suitable for dementia care.
3. To design a practical procedural framework that promotes fair and inclusive decision-making in contexts of value pluralism.

The project combines ethnographic research and normative ethical analysis in an innovative mixed-method design. 

Method

The study consists of three stages:

1. Development of an analytical framework informed by literature review.
2. Ethnographic data collection in collaboration with municipal home care services, including observations, interviews, and ethnographic self-reporting.
3. Normative analysis using reflective equilibrium to develop a context-sensitive concept of partial autonomy and a practical procedural decision-making framework.

The overall design is termed “Mixed Method Proceduralism,” integrating ethnography, normative ethics, and procedural approaches. 

Project period

Project period: August 2026 – Juni 2029.

Publications expected from 2027 onward.

Final framework and publications expected in 2029. 

Collaboration and funding

• NGO
• National Institute of Public Health (SDU)
• Aarhus University
• Dublin City University
• EU COST Action Ethics in Dementia (EDEM)
• Independent Research Fund Denmark (DFF)