Human Forever | The man who moved into a dementia ward, with Teun Toebes | Club Sandwich

Hello. I'm so pleased to be here. Arrived today so a bit jet lagged. 26 hours of traveling, but it's amazing to spread the message in Australia as well.

Yeah, and at that moment I didn't realize that it was so special to live together with people with dementia. And now I do realize it actually tells me a lot that we have lost the way we are living together, especially with people who live with dementia. Because I was studying to become a nurse and I had my first internship in a nursing home. And initially I didn't want to go to the nursing home to do my studies there because a nursing home is not a place people are dreaming of. So I always wanted to work in acute medicine, but I had the internship, it was mandatory. I had to go there. And when I walked in for the first time in my life into a nursing home to the close ward, I remember that it almost felt like I walked into a surreal nobody's land. I Arrived at a place of which I didn't know of, a place where only people with dementia were living. And then you had a coat of a door and we saw it and as something good to do. A few years later, I worked in a nursing home and I asked my colleagues, would you like to live here yourself? And almost all my colleagues said, hell no. If I get a form of dementia, I want to live in a different way. I want to live, for instance, speaking about the sandwich generation, I want to live together with my children or I want to buy a house together with friends. I, I want to start living there or I don't want to live. But no one was dreaming about a future in a nursing home. So when I was 21, I decided to start living on the close ward to experience myself, to get first hand experiences. How is it to live in a nursing home? And what can we learn from people living with dementia themselves? Not by reading about them, but by listening to them. And that has completely changed my view and my perspective on dementia.

Well, I thought maybe two, three months at the beginning. But if you live together, you also start loving each other. So in the end it was three and a half years. I lived two years in one home and then I wanted to experience, are those experiences I have based on this specific home or are they based on the cultural and societal pattern we have in society? So I moved to a second home to evaluate my experiences and to experience what does it tell about the societal perspective on dementia? And of course, it is a societal perspective, because our nursing home system, it's not created only by the intention of, for instance, carers or family members. It's based on the expectation of society. And that's often, for instance, keep my mom safe. So we have a system mostly based on safety and control instead of humanity and quality of life.

First of all, my mom said, my mom said, I didn't expect you to live in a nursing home before I.

I wouldn't know whether my mom will live in a nursing home once in her life or I will take care of her in a different way. But my friends, of course, many of them thought at the beginning, it's quite strange. And I can understand now, it is quite strange if people hear it for the first time, people think, oh, it's such a strange story. Or people think, oh, this is a story about a cute boy living in a nursing home. It's not about me. It's about what do the experiences tell about the urgency to change the way we are living with people with dementia.

I did find it very confronting. And honestly, most of my friends did find it confronting as well. So most of my friends visited me in the nursing home, like, once, and then they didn't want to come anymore because it was confronting to see people in the latest stage of their life, and people were not used to it. People felt anxious about making contact with my housemates. For instance, some of my friends, they kept on coming because they were, for instance, working in a nursing home themselves as well. But what I experienced is from the moment I started living in a nursing home, it felt like the reciprocity towards society was changing. And that's what many people with dementia face as well. People are visiting you, you can't visit them. And for me, it was different because I had the privilege to have the code of the door 2017. It was the code of freedom. So I was still able to strengthen the relationship with my friends by going to them or, for instance, going to a cafe or going to the supermarket, which my housemates couldn't do anymore.

Yeah, well, I decided to start living there, and then I just wrote an email to the care organization. So I wrote an email. My name is Stern Tubes. I have an idea. May I live in your home? And since we don't have a lack of rooms and we don't have a lack of money, we have a lack of humanity. So for me, it was possible to start living there. I didn't start living there because of an intergenerational project, which is a quite fancy word we use for everything nowadays. What do I see happening in reality? Speaking about those intergenerational projects, for instance, we give young students a discount to live in a nursing home, and in exchange for this, they have to do, for instance, 20 hours of volunteer work in the nursing home.

Yeah, we have some initiatives, but the problem of this is that we are quantifying living together. Living together. It's not always possible to quantify it. And you, you shouldn't want it, because what I have experienced is that living in a nursing home is not like entertaining your housemates. It's not like constantly making my housemates happy, going to an amusement park or acting like a clown or whatever. Living together, well, is also about being in the same room without speaking to each other, without constantly looking at each other, but about having the feeling that you are connected. It's about the feeling of security instead of security in form of the code of the door. So it's about revaluing living together on the one hand and. And on the other hand, about connecting with people we often see as others.

Let's say, first of all, dementia can be really painful. Dementia can change the roles you have in your family, the relationality. My own grandma had dementia as well. I also saw it in the lives of my housemates and their loved ones. But what I also heard from the people I was living with and the people I've met all around the world is that what is the most painful is the way society sees you. The fact that you are seen as the other. The fact that people start talking to your legal representative instead of asking you a question. The fact that people feel anxious about getting in touch with you, because people don't know a lot about dementia. There is a very strong awareness about a disease, about what's wrong about you, but not about how to make contact in a better way. So therefore, I strongly believe that dementia is not a care problem. Dementia is a societal issue. So we need everyone in order to change the perspective on dementia. Speaking about the stigmatized view on dementia, I would love to give you a few examples.

Because very often dementia is perceived as a total loss of identity. But this is such a dark image which doesn't help people with dementia at all. People still keep their identity and yes, identities are changing, but they are not lost. I think the whole care sector and also the sector of organizations around people with dementia, they should be more careful about the views we are spreading about dementia. That's also why we wanted to bring a more nuanced and honest story about dementia to the world stage. Because, for instance, the Dutch Alzheimer's organization had a campaign running two years ago and the quote of the campaign was, through dementia you lose yourself and each other. So this is a narrative of fear. By making people anxious about dementia, people want to, for instance, donate money and with this money you can run anti stigma campaigns. So it's almost like a self fulfilling prophecy. When we speak about activities or campaigns about or for people living with dementia, I so often hear that the brain or misunderstanding is part of it. So if people with dementia are, for instance, playing a game, we call it brain gymnastics. If we make a television program about people with dementia, cooking for instance, with each other, we call it the restaurant of mistaken orders. The fact that we always have to speak about mistaken or about the brain tells a lot about the outsider's perspective on dementia. And I strongly believe in order to create a better and more inclusive future for people with dementia, we have to be more reflexive towards ourselves. What are our views on dementia? I strongly believe looking differently always leads to doing differently.

Exactly. In the end, it's about everyone wants to belong. Everyone wants to belong. Everyone wants to be part of something bigger than themselves. Everyone wants to be seen, wants to be heard. And dementia doesn't change this. Dementia doesn't take away all your humanity. If you are, for instance, living for eight to 10 years from your moment of diagnosis, your whole identity doesn't disappear. From the moment you receive your diagnosis, it often disappears. If the people around you don't support you in the right way, well, often

Yeah.

Yeah. Let's say many people who have loved ones with dementia also feel guilty about not knowing how to deal with dementia. And I think it's important to be okay with not knowing and to also accept feelings of guilty, because in the end, living with dementia, well, is not only a personal responsibility, it's a shared responsibility. So you are not alone in this. I think that's very important because I have seen in the nursing home that many family members feel alone because family and friends don't know how to cope with dementia. And most people with dementia have one or two people who are still very much there, but the rest of the people are gone.

And very often people are also gone because of the stigma, because of the existential fear people might have themselves about living with dementia.

So that's why I so strongly believe that breaking the stigma is the core of this change of emancipation. What I also saw is how valuable it can be to get your loved one with dementia out of the nursing home when someone is living there. I'm still working in the practice of care, and so often I hear the sentence, please don't overstimulate people. Please stay calm. But may I ask you, have you been overstimulated in the last month in your life?

Me, too.

The ethical question is, are people with dementia allowed to be overstimulated? I remember an example. I went together with my housemate, Ellie, to the house of her son, Marcel, and we drove there in my car, and on the way, we were talking with each other, and Ellie visited her son at the house of her son, and she got into the house and she started crying. And then 10 seconds later, Ellie said, now I finally know where my son lives. Because of her dementia. She didn't remember that her son was living in this specific house. But can you imagine how precious it must be to know where your son lives? So my message about this is, please take people out. Please keep on strengthening the relations people have, keep on strengthening the reciprocity. And, yes, you don't have to do this every day or every week or every month if this is not possible. Absolutely not. Because people might not remember the specific memory, but they might remember the Feeling. That's the core.

And I also think an extra tip for people, especially people also working in care, welcome loved ones. If people enter the nursing home, because so many people are visiting the nursing home with a heavy feeling, sometimes part of it is the guilt.

Sometimes it's being afraid. How is my dad or mother at this moment?

And how nice is it if the care carers are welcoming you and they say, it's so nice that you are here, it's so valuable that you are here because your loved one with dementia might not say it anymore or might not realize it. So that's why it's so important to work based on the relations people have.

Absolutely.

There is a lot of love in care, but most of the time this love is dependent on individuals in the care system. The care system itself is not based on love. The care system itself is based on safety and control. We still very often define quality by safety. Yeah, let's get to this. If we want to improve quality, we are improving patient safety. I hate this word, but it's a very systemic word which is used very often.

And I strongly believe if we listen better to people with dementia, if we listen better to loved ones with dementia, it's not about quality of care at all, it's about quality of life. And yes, care is important. Care can be a tool in order to facilitate quality of life. But if care is the main goal, then people are treated as a patient is quality of life is the main goal, then we have a more equal approach towards people.

Let me make it very concrete with one example about the closed doors, because I was living on the closed world for three and a half years and I had this privilege of having the coat at the same time. Now, in The Netherlands, over 500 care homes have opened their doors, so people are not excluded based on their diagnosis. It's a very hopeful movement. Opening the doors is the first step. It's an easy step. The most difficult step is keeping the doors open if an incident occurs, because the first reaction will, who is guilty? Whose fault is this? And we will search for a new collective rule to create safety. And the question is, is closing the doors real safety? Because what I saw happening is that, yes, if you close the door, people might not walk out. But the result of this is that people are sitting so much that people are losing their muscles, they are losing their capacity to move independently. So people get dependent on, for instance, a walker or a wheelchair. So because of this, you are leaving one risk by not letting people out. But on the other hand, you create a new risk because of the new risk. Yeah, because people lose their muscles and if they start walking, the risk to fall is even bigger.

Also, this is part of the stigmatized view of dementia. Because so often, and it's really true everywhere in the world, I hear the same arguments. Yes, Stern, we can't open the doors because we have our home next to a busy road. As if. If you open the doors, everyone is en masse, walking out, sitting on the road, or people are walking in front of a bus. This is not the reality. The reality is that.

One person might, but this one person is not a reason to lock everyone up collectively. So it's about changing the standards, not locking people up standardly, but giving freedom as the standard and creating safety for the persons who might need it. And this is happening now in the Netherlands. I think this is a very hopeful example and it will spread all around the world. It's already happening in America, in the United States of America, also in Australia. There's a strong movement about this and I think that's amazing.

There are so many different ways to open the doors. I will give you three short, concrete examples of over medicalization in our care system. And this is also based on safety and control. And this is not because of the individual intention of carers. Because very often we hear the sentence, oh, but people have good intentions. Only good intentions don't lead to quality of life. We created this system based on good intentions, but it's not always doing the right thing. Because if you might have a risk to choke in your drink, for instance, then we might send an email to the speech therapist. The speech therapist will do a risk analysis. If you have a higher risk to choke, you might get thicker in your drink. Second example, if you have a higher risk to fall, we might ask the physiotherapist for a risk analysis. If you have a higher risk to fall, you might get a walker, a wheelchair, or a hip airbag, the newest innovation. Or thirdly, if you feel stressed in your life, you might feel stressed in your life. Sometimes I feel stressed in my life. Sometimes if I feel stressed, I eat less. What do you do?

You eat more. Well, we are different in this.

But can you imagine you're sitting in the living room of a nursing home, you feel stressed and you are not eating because of this. Then we write down, for instance, tone, didn't eat today. Then we are reading this for three days and we are having a multidisciplinary conversation about my behavior of not eating. And we will ask, for instance, the dietician. The dietitian will do a risk analysis. If I don't eat enough, we might get protein drink in front of you. So I don't say that the specializations of those people, the dietitian, the speech therapist, the physiotherapist, the nurse, for instance, that they can't be valued. I don't say that those products can't be value. But we have to be honest. The poverty of our wealth is that we have so many possibilities in our system based on good intentions, based on control and safety, that we are giving those products to people without asking people, what do you want and what do you need in order to have a good quality of life? If we are not asking those ethical questions ourselves, our system will answer automatically with protecting people regardless of their dementia or not.

But it requires a constant awareness of us. I think there is a very hopeful movement going on in the way we look at dementia, but it's too often based on the exception, on the rule. So we have to make it the standard. Quality of life shouldn't be dependent on individuals in the system, individuals who are striving for a better quality of life. Quality of life should be the result of our system.

Yeah, it is, isn't it? Yeah. So the sentence of Leah, the woman in the nursing home, she said, what's the sense of me living?

She didn't feel of any. She did. She had the feeling that she couldn't add anything to society, that she was left alone. And I can only imagine that must be a horrible feeling. It touches the deepest form of humanity in you. So that's also why this sentence of her was the start for the quest, together with Filmmaker Jonathan De Jong around the world to see how different countries look at dementia. What are the possibilities in different cultures? And in Belgium we saw this house where people were still cooking, where people were taking part in ordinary life. They didn't have someone to entertain them. No, it was just cutting the vegetables, doing the washing. And yes, people had real knives. People had real and sharp knives. But back in the days we said knives are not allowed for people with dementia because it can be dangerous. It's even more dangerous to not give people knives because people are losing the capacity to move their hands in a fine motoric way if people are not practicing anymore. So use it or lose it. They were constantly coming back to the question, what gives people dignity? One of my favorite examples as well is an example in Denmark. And I think it's a very practical example which could be of use for people because it's an example where a lively environment was a central theme. So they had, for instance, real plants instead of plastic plants. They had real dogs instead of robo dogs. And they even had real campfire.

There were dogs giving them cuddles. We can't expect people to be lively if we let them live in a dead environment. People want to take care of the environment. And I remember my housemate, Eugenie, every time she was walking into my room, she said, wow, Tuyn, your plants are getting so, so big. And she was watering my plants in my room. Why? Because she grew up in Indonesia. She grew up in a very green environment. It was part of her identity of who she was. But the reality is that we, in the collective rooms, in the nursing home, we didn't have real plans. Do you know why?

Do you know why? No, why? The reason why we didn't have real plans is because the people could eat plants. The sentence they are eating plants. Who is they? Yes, it could happen that someone takes a bit of a plant, a tiny, tiny bit of a plant. So what happens in reality is that we have an incident report because of this happening. And the quality functionaries is reading the incident report. Yeah, because of this. Exactly. There was a new rule. Ban all plants.

In the year I lived in a nursing home, we did spend over €10,000 on plastic plants. And it only tells that it's not only about the amount of money we have in the system, it's about what do we do with the money we have. It's so important that we create a home, a place which feels Like a home.

And even the sentence, it's the leading cause of death. I think it's sometimes very hard in conversations because it also creates a stigma. Sometimes it feels like patient organizations are striving for the number one death cause because then it creates the biggest urgency.

But people are dying before their heart stops. If we don't keep seeing the human being within a person living with dementia. You're a human being first, and yes, you're living with dementia. But it requires from our society that we are sharing this responsibility of care. It's not only something for your children, it's not only something for your best friends, it's something we are in together, and we have to change this.

Later this year, yeah. Also together with Jonathan.

Yeah. And many people often ask me, ton, what is the best example you have seen in the world? But this is not about copying the best example. In the end, this whole message is about realizing a change in culture by changing our narrative and changing a Culture is not an action list of 10 bullet points. It's something we have to work on every day again, step by step. And I see this change happening already also in Australia. It's happening already. The change has begun. We only have to spread it to make it bigger and then we make it a standard.

Yeah. Hopefully. Yeah. Then there will be a new leading cause of death.

Thank you so much.