Bruce Willis and the care pathways for people with neurodegenerative conditions

In recent days, the family of actor Bruce Willis announced that he had been diagnosed with frontotemporal dementia. In this brave announcement which has brought worldwide awareness and attention to this condition, the Willis family spoke about learning to live as full a life as possible with the disease.

While there is currently no cure for frontotemporal dementia, there have been major developments in recent years in care for people living with neurodegenerative conditions. As people are living longer, there has been an increase in the diagnosis of neurodegenerative diseases, creating a demand for new types of care. PROCare4Life is one of the many projects aiming to address that need , by using technology to build the best possible care systems for people with cognitive impairment.

Our  project has been touched by so many people across Europe who, like the Willis family, share the same goal of living as good a life as possible while managing their conditions. They have shown us how it is crucial to living a good life that patients play a role in the design of their care, and that they are not just cared for, but are empowered to care for themselves. To learn about and deliver person-centred care, we have worked closely with people all over Europe to understand what they want and need from care systems to live their best life.

To better understand what a diagnosis of a cognitive condition like dementia is like, let Maria show you. In these two videos we follow a 67-year old retired teacher and her family and carers on a journey from early concerns about her cognitive health, through to a diagnosis and the implementation of the PROCare4Life solution.

If you would like to learn more about  how our user-centred approach informed our solution, you can read our recent scientific publication and see how patients guided us through the design of an ICT system that could support them.

Everyone at PROCare4Life wants to thank to Bruce Willis and his family for sharing their story and raising awareness of frontotemporal dementia, and for putting the people and families living with this condition into the spotlight. They are in our thoughts as they move through their care journey, and we wish them as full a life as possible together.