(2026) ENSURED

Dementia is an umbrella term encompassing multiple subtypes, with Alzheimer’s disease (AD) being the most prevalent and extensively studied. However, rarer, non-AD dementias, such as frontotemporal dementia (FTD), Lewy body dementia (LBD), and vascular dementia (VaD), remain significantly under-researched, particularly in moderate to advanced stages. Perceptions of dementia are largely shaped by AD, reinforcing the notion of memory impairment as the defining symptom, while other subtypes with distinct behavioral, motor, or psychiatric features remain less understood and recognized in care and research. Dementia is also not a static condition; its impact evolves over time, shaped by personal, societal, and structural factors. Even within a specific subtype, individuals experience widely varying trajectories in social participation, independence, and role fulfillment; key dimensions of social health. Despite this diversity, healthcare research and systems often fail to recognize and address their evolving and often unmet needs, leading to disparities in care across regions and populations. This gap in scientific knowledge and clinical practice limits the development of effective, tailored interventions. 

A critical step in closing this gap is the use of digital monitoring tools to systematically track symptoms and experiences in rarer dementias over time. Guided by insights from Public and Patient Involvement (PPI), these tools will support timely and tailored interventions, enhancing person-centered care and care transitions. Additionally, the further development of the INTENSE self-experience toolkit will deepen understanding among caregivers and healthcare professionals through immersive simulations of impairments and behavioral changes, to improve their ability to adapt care strategies. Central to this effort is inclusive PPI, coordinated by Alzheimer Europe and embedded across all work packages and the full project duration. While PPI plays a critical role in shaping dementia research, perspectives from individuals with AD in earlier stages remain overrepresented. ENSURED will specifically involve people with rarer dementias, particularly in moderate to advanced stages, through European and national activities. This will generate more nuanced insights into care needs and inform evidence-based recommendations, inclusive research strategies, and innovation that reflect the lived experiences of those most affected.

The ENSURED project integrates a social health framework and an intersectional lens to better understand and meet the evolving needs of individuals affected by rarer dementias across the disease process. By focusing on moderate to advanced stages, where individuals increasingly struggle to articulate their needs, we aim to map critical care transitions and identify key intervention points that optimize support across disease stages. The findings will contribute to practical, ethically grounded recommendations for more equitable and tailored dementia care, ensuring that insights from lived experience shape research, care pathways, and policy development. ENSURED will also strengthen capacity and shared learning among researchers, both within the consortium and through international networks such as INTERDEM. Together, these efforts will empower caregivers and professionals, improving social health and inclusive, person-centred support for people with rarer dementias.

Partners and work packages (WPs)

• Coordinator: Prof Marjolein de Vugt, Maastricht University, the Netherlands
• WP 1: Patient and Public Involvement, Alzheimer Europe, Dr Faye Forsyth, Dr Ana Diaz
• WP 2: Monitoring symptoms and experiences, Maastricht University, Dr Sara Laureen Bartels, Dr Inez Ramakers, Drs Gorgi Bekkers, in collaboration with Dr Jackie Roos, Erasmus University Rotterdam
• WP 3: Social Health Impact, German Center for Neurodegenerative Diseases *DZNE), Germany, Prof dr Martina Roes, and Koç University, Turkey, Dr Seda Guney
• WP 4: Turning Points for care adaptations, Wroclaw Medical University, Poland, Prof dr Dorota Szczesniak
• WP 5: Self-experience toolkit, Dublin City University, Dr Louise Hopper, and Social IT, V. Connoter
• External collaborators: Alzheimer Ireland, Alzheimer Nederland, Alzheimer NRW, University of Queensland, INTERDEM Academy, ISTAART

Funding
This is an EU Joint Programme – Neurodegenerative Disease Research (JPND) project supported my national organizations, including The Netherlands Organisation for Health Research and Dev (ZonMw).

Call for participation

As patient and public involvement is central in the ENSURED project, an advisory group is being established for WP2. If you live with FTD, are a care partner/ family member of a person living with FTD, or a healthcare professional working with FTD, please feel free to contact Sara.bartels@maastrichtuniversity.nl to explore how you could become involved in this project.