Approximately 87,000 people live with dementia in Denmark, affecting around 400,000 relatives. Family caregivers provide extensive long-term care and face significant emotional and practical burdens. A largely overlooked aspect of this burden concerns ethical uncertainty in difficult decision-making situations—such as truth-telling, dignity, nursing home transition, and end-of-life decisions. Research shows that many relatives lack confidence when navigating ethically complex care decisions, and existing support initiatives rarely address these ethical dimensions systematically. EMPOWER develops and tests a targeted intervention aimed at strengthening caregivers’ ethical decision-making confidence and improving their quality of life through structured reflection and peer dialogue.
Purpose
The aim of EMPOWER is to develop and pilot-test an intervention that strengthens relatives’ confidence in ethical decision-making and thereby enhances their quality of life.
The project investigates:
- Which ethical dilemmas relatives of people living with dementia encounter.
- What types of support they need to manage these challenges.
- How a structured intervention can be developed and implemented within existing dementia cafés.
The intervention combines narrative medicine and moral case deliberation and is co-developed in collaboration with relatives and the NGO DaneAge. The project includes an exploratory pre-post study measuring changes in decision-making self-efficacy.
Method
The project consists of three sub-studies:
- Focus groups and peer ethnography exploring caregivers’ ethical support needs.
- Development of an intervention prototype based on literary texts and structured moral dialogue.
- Pilot testing in 5–6 dementia cafés, including formative evaluation and an exploratory pre-post measurement of decision-making self-efficacy (Family Decision-Making Self-Efficacy Scale).
The design is inspired by the PRECEDE-PROCEED model for public health intervention development and evaluation.
Project period
Project period: June 2026 – December 2029.
Publications expected from 2027 onwards.
Final publications and implementation manual expected in 2029.
Collaboration and funding
- DaneAge
- VID Specialized University
- REHPA
- University College Lillebælt
- TrygFonden