In short
Toon Tobis, a 21-year-old Dutch nursing student, voluntarily moved into the locked dementia ward of care homes in Utrecht and Amsterdam to experience life there and campaign for “radical changes” to elder care. The episode argues dementia care should maximize freedom and normal life, reduce fear-based restrictions, and focus on quality of life rather than stigma and “zero-risk” rules.
Key claims
locking residents on closed wards is harmful because it treats people as “the other”; risk language (“escaping,” “therapy”) reveals institutional fear; better environments (e.g., Denmark) can reduce medication and sedatives; dementia prevention is possible in many cases via lifestyle (South Korea’s FINGER/SuperBrain).
Notable examples
Toon’s ward had a coded door, shared bathroom, fake plants, bans on soft-boiled eggs and outdoor time; he later had a “code of freedom” (2017) to go out.
Guests
Toon Tobis (Dutch dementia-care resident turned advocate; co-creator of Human Forever) and Jonathan de Jong (filmmaker; made dementia documentaries after working as a bus driver transporting patients to day centers; co-creator of Human Forever).
Written by AI. May contain mistakes. Listen to the episode to check what was said.
Chapters
Tap a time to open that second in VOToon's Journey into Elder Care
1:26 to 3:37
Toon Tobis shares his journey into elder care and personal experiences living in a nursing home.
“Growing up in the south of the Netherlands, Toon Tobis was pretty young when he decided he wanted to care.”
Understanding Dementia
3:37 to 4:55
Discussion on what dementia is and the stigma surrounding it.
“Today in Focus, should we give people with dementia more and not less freedom?”
Life Inside the Nursing Home
4:55 to 7:20
Toon provides insights into the daily life and restrictions within the nursing home.
“And, you know, I personally, I am absolutely terrified of getting dementia.”
Social Life in a Care Home
7:20 to 9:11
Exploration of Toon's social and romantic life while living in a nursing home.
“Also, for instance, when it is about the coffee, the carers can often get cappuccino from a different machine and we as residents were drinking filter coffee.”
Friendship and Loss
9:11 to 13:14
Toon discusses the friendships formed in the nursing home and experiences of loss.
“Were your housemates in the nursing home jealous of your freedoms that you were allowed to bring somebody back, that you had a double bed, that you had the code for the ward?”
Global Perspectives on Dementia Care
13:14 to 14:00
Toon and Jonathan discuss their journey exploring dementia care around the world.
“And let me take you to one specific example.”
Exploring Global Approaches to Dementia Care
14:00 to 21:35
Discover how different countries, especially Denmark, approach dementia care and the importance of a lively environment.
“That was our routine to grieve together.”
Language and Perception in Dementia Care
21:36 to 21:49
Explore how language shapes our understanding and treatment of dementia patients.
“it's surprisingly saying so much about our views and yes within the home in denmark they had a beautiful realization of the vision.”
The Balance of Freedom and Safety in Care Facilities
21:50 to 24:28
Discuss the challenges of providing autonomy to dementia patients while ensuring their safety.
“But despite the tender loving care and the idyllic surroundings here too freedom for the residents stops at the gate.”
The Balance of Freedom and Safety in Care Facilities
25:30 to 25:43
Discuss the challenges of providing autonomy to dementia patients while ensuring their safety.
“A missed call doesn't feel like anything.”
Show all 16 chapters
The Balance of Freedom and Safety in Care Facilities
26:30 to 26:58
Discuss the challenges of providing autonomy to dementia patients while ensuring their safety.
“investigates about the strange things happening between AI and us.”
Preventing Dementia: Insights from South Korea
26:59 to 28:00
Learn about South Korea's innovative approach to preventing dementia through lifestyle changes.
“Search for Black Box wherever you get your podcasts.”
Preventing Dementia Through Lifestyle Changes
28:00 to 29:08
Discover how lifestyle choices can help prevent dementia and improve brain health.
“That is really important, especially when you grow older, people are becoming more isolated easily.”
The Fear Narrative Surrounding Dementia
29:08 to 30:15
Explore the societal fears around dementia and the stigma faced by those diagnosed.
“Because as I said, I think a lot of people do just see dementia as a sort of terrible fate that they have absolutely no control over.”
Quality of Life and Societal Treatment of Dementia Patients
30:15 to 32:16
Examine the importance of quality of life for dementia patients and societal attitudes towards them.
“I visited one of those with like fake little shops from the olden days.”
Conclusion and Resources for Further Exploration
32:16 to 34:00
Learn about the authors' work and how to support those living with dementia.
“were still able to support her quality of life in the best way possible.”
Transcript
Automatic transcript. May contain errors.0:00Jonathan de Jong:This is The Guardian.
0:08Jonathan de Jong:Today, meet the young and healthy Dutchman who moved into a dementia home and is now campaigning for radical changes in elder care.
0:23Jonathan de Jong:Your call has been forwarded to an automatic voice message system. A missed call doesn't feel like anything. No red flag, no notifications screaming at you. It just disappears into your call log. And nine times out of 10, that was someone ready to hand you money. That's why today's episode is brought to you by Quo, spelled Q-U-O, the business phone system built so you never miss a call. Here's what I like about it. All your calls, texts, and voicemails live in one place. So anyone on your team can pick up a conversation, see the full history, and respond fast. No more, wait, who talked to this customer last?
0:59Jonathan de Jong:And if you're worried about after-hours leads slipping through, Quo's optional built-in AI agent can answer questions and even book appointments while your team's offline. It's the number one rated business phone system on G2, and over 90 ,000 businesses already trust it to stay reachable. Money is on the line. Always say hello with Quo. Try Quo for free. Plus, get 20 % off your first six months when you go to quo.com slash tech. That's Q-U-O dot com slash tech.
1:35Jonathan de Jong:Growing up in the south of the Netherlands, Toon Tobis was pretty young when he decided he wanted to care.
1:41Teun Toebes:I was 17 years old and I had an internship in a nursing home because I was studying to become a nurse.
1:47Jonathan de Jong:He'd never been into an old people's home before, but But in some respects, it was just like he imagined. There were communal areas with armchairs facing the TV, care workers buzzing about. But then he crossed a threshold into an area where the doors were secured with a code and the residents were locked inside.
2:06Teun Toebes:I was walking onto the closed ward. Those doors are opening. And it felt like I ended up in a surreal nobody's land. The closed ward is an example which really illustrates how we have lost the plot when it is about supporting quality of life.
2:24Jonathan de Jong:The residents of the closed wards were not criminals. They just had dementia. And as his nursing training progressed, Tern started to think there was something fundamentally wrong with locking these people up.
2:38Teun Toebes:I asked all my colleagues, would you like to live with yourself? And then almost all my colleagues said, hell no, if I get dementia, I want to live in a better way. So how can we change this for the better?
2:49Jonathan de Jong:And it gave him an idea.
2:53Teun Toebes:When I finished my studies, I decided I want to live in a nursing home myself to experience what it is like to live here.
3:01Jonathan de Jong:Aged just 21, and his peers were living in grubby student house shares, Thun moved into the locked ward of a home in Utrecht, and then another in Amsterdam. The other residents became not just his housemates, but his friends. They shared meals together, secret beers, a bathroom.
3:23Jonathan de Jong:During more than three years living in the homes, Toon became convinced there is a better way to care. And in a new book and documentary, Human Forever, he explains how. From The Guardian, I'm Helen Pidd. Today in Focus, should we give people with dementia more and not less freedom?
3:50Jonathan de Jong:welcome to today in focus tune i've got to say i am so intrigued by the idea of a 21 year old guy moving into a dementia home did you just wake up one day and think right i'm not gonna live with friends my own age i'm gonna move into a care home or was it an idea that developed over time
4:07Teun Toebes:yeah it was not just suddenly but i'm very thankful for the organization which gave the permission because I did send them an email with the question, am I allowed to live in a nursing home? And surprisingly, they said yes, because no one asks to live in a nursing home, especially not when you're 21 years old. So in the Netherlands, we don't have a shortage of money. We don't have a shortage of rooms. We have a shortage of staff, of humans. So that made it possible for me to live there. But they said yes, because they saw the value of this inter-human connection between me as a young person and all the people living with dementia, my housemates.
4:48Teun Toebes:And that ended up in a beautiful journey where I've met people who really became best friends. And that was very special to experience.
4:57Jonathan de Jong:Yeah. And, you know, I personally, I am absolutely terrified of getting dementia. Both of my grannies had dementia. I really remember visiting them in their homes. I hated visiting them, actually, because they were such depressing places, quite frightening places in a way. And that's why, you know, I found your film so refreshing and interesting and kind of confronting to watch, really. But I think before we go any further, could you just explain for us what dementia is and how it's different from Alzheimer's? Because people often use those two terms interchangeably, but I think they're slightly different.
5:28Jonathan de Jong:Is that right?
5:30Teun Toebes:Dementia is an umbrella term for many different diseases, if you ask a doctor. And Alzheimer's dementia is one form of dementia, is the most common form of dementia. And Helen, when you say I'm absolutely terrified about getting dementia myself, I also understand what you mean. When people feel terrified about dementia, people feel mostly terrified about the stigma of loss. And of course, dementia can be really painful. But so many people I've lived with told the most painful we face is not the dementia itself. It's the fact that people start treating us as the other.
6:10Jonathan de Jong:Yeah, I say that I'm terrified of getting dementia. A lot of us are, but I think an equal number of people are actually in denial about it. And that is in spite of the fact that one in five of us has a chance of developing it. And as we all live longer, that number will probably only increase. The number of sufferers is set to double in the next 20 years to an estimated 81 million people worldwide by 2040. Could you just tell us a bit, Morten, about the nursing home that you moved into? Do you remember the first day that you arrived with your bag, looking around you and thinking, wow, this is my new home?
6:45Teun Toebes:Oh, absolutely, Helen. I had a room with 21 square meters. I was sharing my bathroom with people living with dementia. So also my toilet, but also my living room and the kitchen of the nursing home. It was a home with 130 residents. And only the experience of going to the same toilet as people living with dementia was so useful. Because it really learned me how we are creating differences in institutions. The fact that we as carers have a different toilet than the residents. Also, for instance, when it is about the coffee, the carers can often get cappuccino from a different machine and we as residents were drinking filter coffee.
7:28Teun Toebes:I was living on a ward which had a coat of a door, so everyone with dementia was kept inside. We were not allowed to eat soft-boiled eggs because people were scared that we were massively dying because of the soft-boiled eggs.
7:44Jonathan de Jong:Sorry, why? So I don't understand. Why would a soft-boiled egg be dangerous?
7:47Teun Toebes:Because of a possible salmonella infection. Or another example is, well, we are now in summer and sometimes it's above 30 degrees. But when it is above 30 degrees in a nursing home, sometimes they have a heat protocol. And the heat protocol says it is not allowed to bring people outside because of the heat. It could be dangerous.
8:08Jonathan de Jong:So they weren't being taken out accompanied either. They were stuck in there.
8:12Teun Toebes:Yes, but the result is that I was sitting next to my housemate Muriel. She was born at Curaçao, a tropical island, and she was not allowed to go outside. Well, enjoying the heat is part of who she is. It's part of her identity. So it really shows that our system very often focuses on endless risk analysis. My colleagues will absolutely recognize this.
8:36Jonathan de Jong:And in terms of you actually living in the home, how did that affect your social life? your romantic life?
8:45Teun Toebes:I love this question, Helen.
8:47Jonathan de Jong:Does everybody ask you that? Did you get laid?
8:49Teun Toebes:I get it so well because people say, this is so strange. Like, why would you start living in a nursing home if you're 21 years old? And then most of the people of my age would ask me, how do you do it if you want to take someone home? And then I ask, what would you do? And then people say, I would just take someone home. Like, why wouldn't you? It was my only home. So yes, I could take people home but I have to be honest Helen people were very often scared when they were walking on the clothes ward and seeing people with dementia but I was sleeping for instance in a two-person's bed so when I look at my housemates they were all sleeping in a hospital bed so there were some differences and they really illustrate the changes we have to make if we want a place to feel like a home, we have to organize it like a home.
9:40Jonathan de Jong:Were your housemates in the nursing home jealous of your freedoms that you were allowed to bring somebody back, that you had a double bed, that you had the code for the ward?
9:50Teun Toebes:Of course, some of my housemates were really aware about the fact that I had privileges. The code was 2017. It was the code of freedom. So I was able to go outside, to go to the university, to go to the supermarket, for instance, like all those normal things people do in their lives. And when I came back, very often, Otz, my housemate Otz, he became one of my best friends. He was waiting for me and he was waiting for the stories.
10:27Jonathan de Jong:And Tin, I should also introduce the second person on our call. You're with your longtime collaborator, Jonathan de Jong. And you two, as I've already said, have made a really moving and I think also quite confronting documentary.
10:40Teun Toebes:Who wants to be locked up in a place where loneliness resonates in echoing hallways?
10:46Jonathan de Jong:Which looks at the different ways people with dementia are cared for around the world.
10:50Teun Toebes:How do other countries deal with dementia and what can we learn from them?
10:55Jonathan de Jong:The film is called Human Forever. There's an accompanying book, which is out soon in the UK. so Jonathan you were also a teenager I think when you got interested in the topic of dementia when you were working as a bus driver transporting people with the disease to and from a day center how did that affect you? Yes of course for me as a 18 year old as well you think like hey I know everything about life but then when you enter a closed ward it's something so different and it was actually also quite shocking because I thought like okay I know people can grow old and you can grow older in a healthy way, but in this way where people were wandering around in circles, sitting at the table the whole day, watching television.
11:36Jonathan de Jong:It was kind of a scary image. And so when I became a filmmaker in 2018, I created my first documentary series about dementia. And when I came across Stone a few years later, it was really for me like, hey, I can tell this story through a young lens, through a young perspective. And in the documentary you shot, Jonathan, Human Forever, we see Ad, one of Tun's housemates. Tell me about your bond, Tun.
12:05Teun Toebes:When I just met Ad, he felt very depressed, like he didn't make any contact with me. But in the time we were living together, like more and more he started coming to my room. We were sitting next to each other for dinner. And in the end, we got such a strong connection that every day he came to my room. I heard the sound of his walking. It was a certain rhythm. And then he came to my room and he asked me, do you want to watch soccer with me? And then we always drank a beer because he knew I had real beers in my room. He was not allowed to drink real beer during the week, only in the weekend.
Read the full transcript
12:56Teun Toebes:Yes, Ad didn't remember the name I had, but he absolutely remembered the feeling we gave to each other. And that's what matters most.
13:05Jonathan de Jong:And was it hard for you, though, to know that your housemates were at the end of their lives and that you might soon have to grieve them just as you're getting to know them? Was that difficult?
13:15Teun Toebes:the easiest answer would be to say yes but the reality is no because i knew that my housemates were passing away i'm the only nursing home resident who actually survived a nursing home of course i feel very sad i also accepted fully because i saw that the quality of life was not that high anymore. And let me take you to one specific example. My neighbor was my housemate Ellie. She was in her 90s. She was living with dementia. And on a certain moment, we developed a very strong friendship. And when Ellie passed away, every morning, I went together with Ad to her room to drink a coffee. That was our routine to grieve together.
14:04Teun Toebes:Yes, I feel sad about losing precious friends but I don't feel sad about the fact that my housemates passed away because that is the reality and everyone working in the system knows this.
14:28Jonathan de Jong:Let's talk about the journey that you two made around the world to look at how different countries approach dementia care what questions were you hoping to get answers to we were really on a quest the thing that we were really were aiming for were hopeful initiatives everywhere around the world where also during the research they were opening up with the two arms saying Jonathan please come to our country because we think the Netherlands is always the best and why are you coming to us because you're the example in the world together with Sweden all those kind things where we said like yeah but also when we ask the people here they feel excluded so are there different ways of approaching people with dementia and a different way of to see what is a good quality of life and that was really the the goal in the UK certainly we are enthralled to the Scandinavian countries and basically all good metrics seem to emanate from Scandinavia the Nordic countries and you too did go to Denmark, didn't you?
15:32Jonathan de Jong:To a nursing home that looked very beautiful in the film, by the sea, overlooking an idyllic coastline. Tell me about life there and the residents that you met there.
15:40Teun Toebes:What we saw in Denmark, for instance, is that they had a very strong focus on the lively environment. So we have visited a home and they had real plants, They had real dogs. They had a garden where people could go outside. People could sit at the campfire. I don't know if it's a perfect care. There's a lot of places around the world, but I think it really works here. And I think by doing this way, we reduced almost all medicine and we never used sedatives. And my first reaction was, oh, wow, this is very special because we would never see this in the nursing home I live in. because in the nursing home I lived in, we only had fake plants.
16:24Teun Toebes:Why did we have fake plants? Because we were afraid that people with dementia are eating real plants. So it could be poison.
16:31Jonathan de Jong:And what about the real dogs? Do care homes have fake dogs?
16:34Teun Toebes:Yeah, so you have, for instance, robot dogs or robot cats. Just make it a normal home with cats and dogs and just normal furniture. Yes, yes, yes. but the core of what they are doing in Denmark is a real lively environment leads to lively people if you have a dead environment it leads to dead people so if you don't have any stimulation in the room people will just sit at the table lay their head on the table and that's their life so in dementia care we very often say well we shouldn't overstimulate people but we could also ask the ethical question are people living with dementia still allowed to be overstimulated because you also might be overstimulated now and then in your own life yeah tell me about it people with dementia could this be as well there's a bit in the film where
17:30Jonathan de Jong:it may or may not be in Denmark and there's a a woman who's asleep very peacefully and there's a cat just lying on her is that in Denmark it was Denmark it was Denmark yeah and there was just something so lovely about about that yeah in my granny's care home they wouldn't have been allowed that and also you mentioned that then around a campfire again with my granny when she was still living at home we were so worried about her even cooking anything because we thought she would leave the gas on i think a lot of people might hear dementia patients and an open fire and think god that's dangerous how would you react to that really also what you saw in Denmark is that they approach the facility that the people live in as an extension of normal life.
18:12Jonathan de Jong:What we've heard throughout the four or five years that we were working on a film, everybody, when it comes to a good quality of life, wants to extend their normal life as best as possible. And of course, as best as possible is really nuanced sentences as well. Also in Denmark, that's why they had good food for a brush fire and of course there's somebody sitting next to them one of the carers but we are all afraid that they would jump into the fire straight of course not because people know it's fires we are so focused on the extreme things that we hear about extreme symptoms that we hear that we are start denormalizing everything about normal life that's what really
18:54Teun Toebes:stands out in Denmark and the easiest thing to say after this is yeah that's beautiful but we don't have the money. Realizing this change is not only about more money because the example of the cat which lays next to the woman it doesn't cost a euro or a pound more to let the cat lay next to the person in bed and it even saves money because you don't have to give themas a pump the sleeping pill at night. So we in the Netherlands we spend the most money in the whole world on social care. It's 4.1 % of our GDP. So it's 18 billion euros. And even here in the Netherlands, we can't seem to buy happiness.
19:47Jonathan de Jong:And I think anybody who's visited a nursing home would have seen examples of behavior that might seem quite strange, sometimes frightening, people losing their inhibitions. and there's a bit in the film that that got me where you show a woman who's lying on the floor and tell me about that because i think it's a very interesting example yeah there was also in denmark was in an other nursing home but they also had the same vision about trying to facilitate people in their wishes and they had a on the floor heating and the woman who was lying on the floor she was always going there on the same spot at first everybody was like, shall we pick a robber?
20:26Jonathan de Jong:But the woman told them, like, no, it's really nice because I feel warm. So they said, it's okay. If you think this is a good quality of life, then we should facilitate it. No matter if it looks funny to us, those small things matter the most for people who are living there day in, day out. I suppose even in Denmark, there seemed to be limits to the autonomy and freedom that the residents were enjoying, because the home was still surrounded by a big green fence, wasn't it and is there any way around that having some sort of secure fence to stop people
20:59Teun Toebes:escaping leaving oh i hear you saying the word escaping yeah i know i hesitated before if someone with dementia walks outside we call it escaping but if i walk outside we call it walking and i have so many examples of this use of language if my housemates were listening to music we would very often call it music therapy or if they were petting a dog we would call it animal therapy yeah therapy dogs yeah yeah if i'm playing a game we would call like he's playing chess but if my housemates are playing a game we call it brain gymnastics so the language we use is it's it's surprisingly saying so much about our views and yes within the home in denmark they had a beautiful realization of the vision.
21:51Teun Toebes:But despite the tender loving care and the idyllic surroundings here too freedom for the residents stops at the gate. But still they had a fence around the nursing home so we met Kate and Kate wanted to go outside so she was standing at the fence I want to go out. I will not. I will not. But why was the fence still closed? Not because the nursing home didn't want to open the fence, but because the society and especially the municipality was scared about what could happen. Because if an incident occurs, the first public reaction would be, who is guilty?
22:40Jonathan de Jong:Yeah, whose fault is it? Who let them out?
22:42Teun Toebes:Who is responsible? And this really shows the culture of fear. If the fundament of our system is fear, then we create a system which protects the system itself, but which is not protecting people with dementia. So I'm very sure, Helen, within five years, also the fence in Denmark will be open.
23:04Jonathan de Jong:You think really that's the direction of travel?
23:06Teun Toebes:Absolutely. In the Netherlands, over 500 care homes have opened up to closed wards.
23:12Jonathan de Jong:And if something happens, for instance, when somebody walks out the door, has an accident, of course, then we should say it's a consequence of a good quality of life. And I can make it very concrete with an example that's really in a nursing home just around the corner. Annika, she's called, and she's still, I saw her two days ago walking besides my house. and when her children came to the nursing home they promised her mother that she could walk because that was her biggest hobby and then of course the nursing home said like that's that's that's that's not possible but then the family insisted that she could walk and then the nursing home said okay if you say we take the responsibility of everything that happens when she walks out it's fine we go to the municipality they talk to the mayor and the mayor said like i love it and then the result of sharing the responsibility was really that she has already four years now walking three, four times a week to the center of the village buying flowers with her own bank card which is also very special when it comes to dementia and she has such a good quality of life and I really think it's possible to change within the system if we are brave enough to talk about what is really a good quality of life and do we want to share that responsibility.
24:37Coming up, what if we didn't need these nursing homes?
24:58Jonathan de Jong:Today's markets move fast. Get the insights you need in 10 minutes with the Barclays Brief. A new podcast from Barclays Investment Bank. Through sharp dialogue and scenario-based analysis, our leading experts analyze key market themes each week. So whether you're managing a portfolio or leading a business, the Barclays Brief podcast can help you make smarter decisions today. Stay sharp. Stay brief. Find Barclays Brief wherever you get your podcasts. Your call has been forwarded to an automatic voice message system. A missed call doesn't feel like anything. No red flag, no notifications screaming at you.
25:36Jonathan de Jong:It just disappears into your call log. And nine times out of 10, that was someone ready to hand you money. That's why today's episode is brought to you by Quo, spelled Q-U-O, the business phone system built so you never miss a call. Here's what I like about it. All your calls, texts, and voicemails live in one place. So anyone on your team can pick up a conversation, see the full history, and respond fast. No more, wait, who talked to this customer last? And if you're worried about after-hours leads slipping through, Quo's optional built-in AI agent can answer questions and even book appointments while your team's offline.
26:12Jonathan de Jong:It's the number one rated business phone system on G2, and over 90 ,000 businesses already trust it to stay reachable. Money is on the line. Always say hello with Quo. Try Quo for free. Plus, get 20 % off your first six months when you go to quo.com slash tech. That's Q-U-O dot com slash tech.
26:57Jonathan de Jong:investigates about the strange things happening between AI and us. The whole series is out right now. Search for Black Box wherever you get your podcasts. A lot of the hope in your film I found from the chapter where you go to South Korea, a place with the lowest birth rate globally and a country that is understandably worried about the burden of their ageing population. And in fact, they are on track to become the oldest population in the world before too long. and there they are really treating dementia as a preventable disease in many cases and you spoke
27:33Teun Toebes:to some south korean experts according to the latest evidence 40 percent of dementia is related
27:39Jonathan de Jong:to modifiable lifestyle environmental vascular risk factors they have this thing called the finger model to try and prevent dementia what is that finger is the first study in the world showing
27:50Teun Toebes:that it is possible to prevent cognitive decline with the finger.
27:55Jonathan de Jong:Yeah, the finger model is based on five fingers. The first finger is exercise. Stay active throughout your whole life. Also, be cognitive active. So stay socially connected. That is really important, especially when you grow older, people are becoming more isolated easily. So stay connected. Healthy food. What's healthy for your heart is healthy for your brain. Socially active together with others.
28:18Teun Toebes:and vascular risk control. How it works in practice is that in South Korea, they have over 220 dementia centers where people follow the SuperBrain program. Based on the results of physical, cognitive and vascular tests, people with a higher risk can follow the 24-week digital program with a focus on lifestyle change, using the five pillars of the finger method. Over 40 % of dementia, specifically Alzheimer's dementia, is preventable. It doesn't say that if you get Alzheimer's dementia that you have a bad lifestyle. So we have to be clear about this. I think the message of Superbrain is very hopeful in order to support prevention when it comes to dementia.
29:07Jonathan de Jong:Yeah, I think that's really important. Because as I said, I think a lot of people do just see dementia as a sort of terrible fate that they have absolutely no control over. And of course, you know, for some cases, people, as you said, it's not necessarily anybody's fault. But this idea that such a large percentage of dementia can be slowed or prevented entirely is a message that I think hasn't got through to many people in the UK yet.
29:32Teun Toebes:And I know why. Because the dominant narrative of dementia focuses on fear. In the UK, you hear so often sentences like, dementia is the UK's biggest killer. And those sentences are spread by organizations which are claiming to be the voice for people living with dementia. And at the same time, those organizations say, we want to create a future where dementia no longer devastates lives. The question we could ask ourselves is, is dementia always devastating the lives or is it also the effect of the stigma which devastates
30:14Jonathan de Jong:lives and knowing everything that you both know now after spending all of these years traveling the world and talking to carers and people with dementia are you afraid of developing it i'm not afraid of getting it of course i want to grow old the best way i can but if i get it hopefully people will listen to me and facilitate me in my wishes to stay in my community for as long as possible like he's also featured in the film is rob he was a cardiologist one of the best in europe and on the day that he got the diagnosis he told me the first thing that he told me he said like jonathan after i got my diagnosis none of my colleagues called me ever again wow and that was really heartbreaking for me because that's exactly the point that not the condition is the worst but
31:08Teun Toebes:it's how society treats us i can't answer the question whether i'm fearful of living with dementia because there is not one person with dementia there are so many different possibilities people have i also saw that people with dementia can have a great quality of life i'm really afraid of ending up in, for instance, a dementia village, which is sometimes seen as an example of how it could be done differently.
31:38Jonathan de Jong:I visited one of those with like fake little shops from the olden days.
31:42Teun Toebes:I am very afraid of ending up in an artificial environment, of going to a fake supermarket or a fake theater. I'm very afraid of ending up with thickener in my drink because people are afraid I might end up choking in a beer I would love to drink. But this has nothing to do with dementia. This is about the way we are treating people in our care system. I don't wish people to get dementia. Also, my own grandma was living with dementia. But I also saw that we as a community, we as the people around her, were still able to support her quality of life in the best way possible. The aim of living well is not to make people happy.
32:27Teun Toebes:If you look at the websites of care organizations, You always see happy people smiling broadly. And the idea which is created by this is come to us because we can make you happy. We don't want to spread the narrative that quality of life is only about being happy. Because being allowed to feel sad, being allowed to feel alone is also part of being human. quality of life means accepting risks which are inherently bounded to someone's life if we build systems based on zero risks then life will be zero as well well chen and jonathan thank you so much it's been really interesting to talk to you thank you so much thank you
33:19Jonathan de Jong:that was turn to abyss and jonathan de jong their new book human forever searching the world for a better life with dementia will be available in the uk on the 17th of september their film human forever is currently available to stream in the netherlands japan brazil belgium germany austria switzerland and france with other territories to be announced soon if you enjoyed this episode and of course i hope that you did perhaps you'd consider leaving us a review we really enjoy hearing what you think of the show and it also helps other people to find us and that is all for today this episode was produced by saskia collette and presented by me helen pidd sound design was by Brian McNamara and executive producer was Sammy Kent we'll be back in your feeds this afternoon with the latest
34:31Jonathan de Jong:This is The Guardian.
35:00Jonathan de Jong:We'll be right back.
