On Wednesday 31 August, Teun Toebes stood in an unprecedentedly full lecture hall to speak to the first-years of Social Work about his experiences with people with dementia. Students who couldn’t get in hoped to hear something in the hallway. Toebes: ‘One in three students has a grandparent with dementia.’
The closed ward instead of a student home
At the age of 21 Toebes decided to live in a closed ward of a nursing home. His mission is to improve the lives of people with dementia and to break the stigma surrounding this disease. Since then, he has been in the news regularly and now has 24 thousand followers on Instagram.
The students are dead silent when Toebes speaks. He argues for ‘more humane care’. Without bare corridors, suspended ceilings or plastic plants (someone eats such a plant now and then, so what?) And with the occasional hug. He calls on students to question the system and not to settle for a nonsense answer. ‘Ask yourself: would you like to end up in a closed ward yourself?’
HU research into dementia
Toebes collaborates with Jacoba Huizenga . This HU researcher’s PhD research focuses on the same subject. She asks people with dementia what they need. Toebes and Jacoba found each other through social media and have been on stage more often since then. This time Jacoba was alone in the room.
Huizenga: ‘Because there is no medical solution for the disease, it is often about relieving the burden on informal carers. At the moment there is too little attention for the people themselves. It’s scary not knowing your neighbor’s name anymore. To keep losing your keys, to find yourself forgetting to drain the potatoes. Often, however, their deepest wish is to maintain the connection with their loved ones.’ She is looking for social and technological solutions for a more inclusive society.
Huizenga is a teacher at the Social Work training and does her research at lectorates Participation Care and Support and Proactive care for elderly people living at home.