Text: Marjolein de Jong | Photo: David Meulenbeld | February 24, 2026
In your books Daily Life with Dementia and We Remain People, you write that during your research into palliative care, you ended up in nursing homes. What did you find there?
When I first entered such a nursing home for my research on death, I found it quite spicy. I was in my late twenties and there were these bulging corridors, where someone was wandering around with a doll, cringing. The medical staff explained to me the different stages of dementia and the approach was medical and technical. I did try to make contact with the residents, but went along with the approach of the care staff. I actually kind of left the residents out.
When did you start looking differently?
I decided to follow people with dementia who were still living at home. Then I did see that they made the occasional mistake, but otherwise they were still themselves. When I asked them what the most difficult thing was, they didn't say the disease, but they mostly talked about their environment.
That a nurse tells the partner that the person can no longer cook, while standing next to them. That people start talking louder, or that people start avoiding parties because it gets quiet when they come in. And when they remarked that they didn't like that, that people would say, "Ah, yes he doesn't understand it all anymore. That is the moment when someone is no longer seen as a full human being.
Does it affect you personally?
I recognize the feeling of being excluded. My father is Chinese and comes from Indonesia. My grandparents were discriminated against in Indonesia and even in the Netherlands my family never quite belonged. That subtle exclusion, like when people talk over you, has a huge impact. I recognized that mechanism in people with dementia.
Why is dementia so stigmatized?
Dementia affects your brain and people find that scary. The image lives that you become another person, a kind of empty shell. With brain disorders like this, things are also taken away immediately after diagnosis, such as driving and, in the past, even voting. There is also a lot of imagery involved. In commercials on television you see a lost old man and that emphasizes how horrible it is, while you rarely see what people can still do. Those images work their way into how we look at people.
What does that way of looking at people do to people themselves?
If you are constantly addressed as a patient, you start to behave that way. Someone can become quiet, but it doesn't have to be just because of the disease. It can also be because someone feels excluded. What someone does depends on how we approach that person.
You are an associate professor of Long-Term Care and Social Approach at VU University Amsterdam, as well as founder of Social Approach Dementia. What exactly do you do?
With the Social Approach, we help people reshape their lives after the diagnosis of dementia. We don't look at what someone can no longer do, but rather at what they can do. What does someone find important, what gives them meaning and how can we support that?
For example, there was a scientist who noticed that he could no longer read and had to stop writing his book. He had always collected art, but now decided to paint himself, and has become quite successful at it. Or a woman who had an art deco store in town and after her diagnosis was told: yes but then you can't run a store anymore, can you? Why not? We looked at how you could and made sure someone could help with the checkout process.
It's about reshaping life in the face of adversity. I think our job in life is also to be resilient and reshape our lives when something drastic happens.
What do you think it takes to age well?
Not just formal care, but a tangible place in society. I was recently in Bonaire and Aruba for my research and saw how people there care for each other in disadvantaged neighborhoods. Of course they also have very different challenges, but it is much more social there.
Here in the Netherlands, people are often thrown back on themselves. And if a home care worker only has three minutes to put on or take off a support stocking, you don't build a bond with each other. And without a bond, there is no humanity. Growing old well means being seen and continuing to belong.
What advice do you have for people with a loved one with dementia?
Realize that the behavior of people with dementia is not only from the brain defect, but is also caused by how the environment treats them, often unintentionally and well-intentioned. When you keep that in mind, you start doing different things, and that creates space. Space to perhaps reshape the bond together. It's a sad thought that the environment can make life harder, but also a hopeful one, because we can change that.
Check out Anne-Mei The her website here.
