01.June 2026 - 31.May 2029

Optimizing Care for Patients with Neurodegenerative Diseases: Socially Embedded and Patient-Centered Long-Term Care (OPTICARE)

Background

In their advanced stages, neurodegenerative diseases such as Parkinson’s disease and Alzheimer’s disease are often associated with increasing cognitive and functional impairments, complex care needs, and transitions between different care settings. As the disease progresses, many people require institutional long-term care. However, care is frequently insufficiently coordinated across medical, nursing, and social domains and does not always adequately reflect the needs of people living with neurodegenerative diseases, non-professional caregivers, and healthcare professionals.

How can quality of life, dignity, autonomy, and participation be protected as cognitive and functional impairments progress? How can transitions between different care settings be better coordinated? And which structural, organizational, ethical, and legal conditions enable reliable and patient-centered long-term care?

Research Questions and Objectives

The international OPTICARE research project examines institutional long-term care for people with advanced neurodegenerative diseases in Germany, France, Canada, Hungary, and Turkey. The project examines how care structures and care pathways are organized across different healthcare systems, identifies unmet needs and structural barriers, and explores opportunities for improving long-term care.

To address these questions, OPTICARE applies a comprehensive mixed-methods approach. In addition to a comparative analysis of long-term care structures, the project conducts qualitative interviews and ethnographic observations. People living with neurodegenerative diseases, non-professional caregivers, healthcare professionals, and other stakeholders from the health and long-term care system actively participate in co-design workshops. Furthermore, standardized measures assess quality of life, cognitive status, care integration, and the burden experienced by non-professional caregivers. A cross-national ethical, legal, and health policy analysis brings together these complementary perspectives.

Based on these findings, OPTICARE will develop empirically grounded and ethically informed recommendations to improve care coordination, strengthen interdisciplinary collaboration, and support the sustainable governance of institutional long-term care. The project seeks to contribute to adaptable models of care that prioritize the quality of life of people living with advanced neurodegenerative diseases and those who support and care for them.

OPTICARE is conducted within the EU Joint Programme – Neurodegenerative Disease Research (JPND). The subproject at the Center for Life Ethics is funded by the German Federal Ministry of Research, Technology and Space (BMFTR).