Grant: Operating Grant: Joint Programme on Neurodegenerative Disease Research (JPND)

Many people living with advanced Parkinson's or Alzheimer's disease eventually need long-term care. Patients often rely on many different people: doctors, nurses, care assistants, therapists, social workers, and family members, who often lack coordination of efforts. As a result, patients and families can feel confused or left alone. The care they receive might be technically correct-but still not really meet their needs. We believe that good care must be centered around the person receiving it. To achieve this, we want to work together with patients, family members, care workers, and decision-makers. We will speak with them, observe their daily routines, and invite them to co-develop new ideas for better care. To do this, we will talk to patients, family members, and care staff. We will visit nursing homes in five different countries and observe how care is actually delivered. After that, we will bring together patients, caregivers, healthcare staff, and policy experts in workshops. In these workshops, we will work with them to design better care models. In the final step, we will look at whether these ideas can be realistically put into practice, and what support systems are needed to do so. We will also study the wider context that shapes how care works-such as laws, funding systems, and professional responsibilities. The OPTICARE project takes place in Germany, France, Hungary, Turkey, and Canada. Each country has different care structures, but many face similar problems. By comparing them, we hope to understand what works and where improvements are possible. We will develop clear, evidence-based recommendations that can help shape future care. OPTICARE wants to help ensure that people with advanced Parkinson's or Alz-heimer's disease receive care that is not only safe and organized, but also meaningful and responsive to their needs-especially when they depend on nursing homes for everyday support.