My name is Gerda Van Tongerloo. I am a member of the European Working Group of People with Dementia and very active in the Netherlands as well. I want to tell you a bit more about the Dutch research group "Brain Power", of the HU University of Applied Sciences Utrecht. Brain Power is a group of experts with dementia who are involved as co-researchers in the research “Everyday life with dementia” by PhD candidate Jacoba Huizenga. This is unique because the people with dementia are not solely participants. No, we are the co-researchers of this research.
The group Brain Power has made , based on the research, a special book about our experiences of living with dementia. This is one of the first books about this topic written by people with dementia themselves. We are very proud that we finished it. The book is called “How do I live with dementia?” We notice that many people are interested in this book, also outside of the Netherlands! The readers are very delighted to read about personal insights and useful tips. The reader can relate to his or her own situation. The book covers topics such as changes in behaviour, meaningful activities, and relationships with family and friends. It also includes inspiring stories from experts and individuals living with dementia.
This year, the INTERDEM Academy Publication Award was awarded for the scientific article “What matters most: Exploring the everyday lives of people with dementia,” written by Jacoba Huizenga and team. In this article, the concept of “everyday life” is explored from an interdisciplinary and social perspective. Through this lens, the research shows that it is possible to understand experiences outside traditional healthcare paradigms. In the research, creative participatory research methods are used. The research group Brain Power is the perfect example for participatory research. The INTERDEM award will be presented to Jacoba Huizenga in Geneva during the Alzheimer Europe Conference. Jacoba and I will present the research at the conference (QOP5-01 What matters most in everyday life: empowering the voice of people living with dementia through collaborative research). Pictured: Brain Power group at the launch of their book “How do I live with dementia?”, June 2024
