ENSURED: Empowering Needs-based Social Health and inclUsive care for RarEr Dementias in moderate to advanced stages
What is ENSURED?
ENSURED is a European research project working towards more inclusive, person-centred care for people living with rarer forms of dementia. While Alzheimer’s disease is the most widely studied form of dementia, other forms—such as frontotemporal dementia, Lewy body dementia and vascular dementia—remain less understood, particularly in the moderate to advanced stages.
Funded by the EU Joint Programme – Neurodegenerative Disease Research (JPND), ENSURED brings together researchers, healthcare professionals, organisations and people with lived experience across Europe. The project combines a social health perspective with digital monitoring tools, inclusive public and patient involvement, and innovative educational approaches to better understand changing care needs throughout the course of dementia.
Why ENSURED matters?
Dementia affects everyone differently. Depending on the type and stage of dementia, people may experience changes in behaviour, movement, mental health, relationships and their ability to participate in everyday life. Yet research and care are still often shaped by what we know about Alzheimer’s disease, leaving the needs of people with rarer dementias insufficiently recognised or addressed.
ENSURED aims to close this gap. By listening to people with rarer dementias and those who support them, the project will explore how social health and care needs evolve over time, identify critical transitions in care, and investigate how digital monitoring can help identify changing needs earlier. The project will also further develop the INTENSE self-experience toolkit, helping caregivers and healthcare professionals better understand the experiences of people with dementia.
Ultimately, ENSURED aims to develop practical, evidence-based recommendations for more equitable, tailored and person-centred dementia care, ensuring that the voices of people with rarer dementias—including those in moderate to advanced stages—help shape research, care and policy.
Who are we?
ENSURED is a multidisciplinary European consortium coordinated by Professor Marjolein de Vugt at Maastricht University, the Netherlands. Our partners bring together expertise in dementia research, nursing, social health, public and patient involvement, and the development of more inclusive care practices.
The consortium includes:
- Maastricht University (MU) – the Netherlands
- Dublin City University (DCU) – Ireland
- German Center for Neurodegenerative Diseases (DZNE) – Germany
- Alzheimer Europe (AE) – Luxembourg
- Koç University (KU), Faculty of Nursing – Türkiye
- Wroclaw Medical University (WMU) – Poland
We work closely with external collaborators, including national Alzheimer organisations, international research networks such as INTERDEM, and partners from academia and industry. People living with rarer dementias and their care partners are central to our work, helping ensure that the project reflects lived experiences and responds to real-world needs.
Together, we aim to make dementia research more inclusive and support better care for everyone affected by rarer dementias.