PhD Defence Maud Monica Johanna Daemen

Keywords: Neurodegenerative disorders, Lived experiences, Ondersteuning op maat, eHealth 
 

"Bridiging Horizons in Neurodegenerative Disorders: Assessing Needs and Tailoring e-health Support in Young-onset Dementia, Parkinson’s Disease, and Huntington’s Disease"

What do people need when their lives are profoundly affected by a neurological condition such as Parkinson’s, Huntington’s, or young-onset dementia? This dissertation explores the impact of these conditions on individuals and their families, from emotional struggles to practical care challenges. The research highlights the difficulties they face and the types of support that can make a difference. Key insights include how people adapt to changes, which strategies are helpful, and the vital role of strong social networks and specialized support. At the same time, stigma, shame, and limited access to appropriate care often pose significant barriers. The dissertation also examines how care can be improved, for example through digital tools like the online support program ‘Partner in Balance’, which offers tailored guidance for coping with changes. It emphasizes the importance of personalized support, clear information, and collaboration. Such collaboration should not be limited by a single diagnosis or perspective. By looking beyond those boundaries, it becomes possible to work together toward care that is both suitable and accessible. 

Click here for the live stream.