What I’ve learned as a healthy 24-year-old living in a care home

In Teun Toebes’s small bedroom is a pub-style peanut dispenser, coffee machine, and well-stocked bar.

In the wide corridor outside are fake plants and the sound of blaring televisions. It could be any well-appointed student digs, but for the past three years the 24-year-old, who finished his Master’s degree in care ethics a few weeks ago, hasn’t lived in
student accommodation.

Instead, he has voluntarily made his home on the closed dementia ward of a nursing home in the Netherlands, the country in which he was born, to see what it is like to live permanently in such a facility.

He eats with fellow residents, whom he regards as friends not patients, and calls his “housemates”, and sleeps in a room similar to theirs. The only difference is he knows the code to the door to the outside world.

“It’s my one big privilege,” explains Teun. “I have the code of the closed ward. I couldn’t live here for three years without it. In fact, I think no one can; it would leave you so closed off from the world.”

He lets the idea linger. His point being that this is how we expect people living with dementia to exist: cut off, institutionalised, and isolated.

“I live with the most beautiful people,” he continues. “At the same time, they are all people with dementia. However, that is only one characteristic they all share and it is not their defining characteristic.

“Of course, as a person with a disease you have specific needs from that disease, but not all your needs as a human being are driven only by it.”

The Gen Z-er believes strongly that we need to destigmatise people living in care.

“We need to see people living in the nursing home as equal human beings,” he insists.

“For example, at the moment, as a 24-year-old living here, I am allowed to eat a soft-boiled egg. But at this moment, my fellow residents are not allowed to do so because there is a fear of salmonella. We have made our fear their problem.”

Having spent two years in a facility in Utrecht, for the past year he has been living in the Green Lanes Nursing Home, a short distance away.

For Teun – whose mother is a psychiatric nurse and father an accountant – a typical day might see Wil, 87, arriving for a proper cup of coffee and a catch-up in the morning, while Jopie often pops by his room to cadge a packet of crisps.

At the first care home, Teun made a best friend in Ad, a 79-year-old dementia patient who he’d take out to coffee shops and laugh about life, all the while watching him come alive.

All this has given him clear ideas and a remarkable, unique understanding about what needs to change for some of society’s most vulnerable citizens.

“What is the aim of nursing home care?” he muses, rhetorically yet with a clear vision of what the answer should be.

“It’s quality of life in the last phase of people’s lives. If people are living for only a month or a year – and the average stay in a nursing home is just eight months – then quality of life should be the most important aspect. Instead, the focus is on risk management, control and safety.”

He says he would be “the last person” to say that safety is not important, but he is passionate that this should not be the overarching principle in dementia care.

“It is all about the balance between safety and quality of life. In this system, we mainly focus the power of the collective on risk management. This means that people’s individual needs are not fulfilled.

“However, every innovation should be context specific. What is universal is the human image. We need to really see people living with dementia as human beings with a disease, not as patients or clients. In our Western world, we want to solve life with care.”

Now the captivating book Teun has written about his experiences as a willing care home resident is about to be published in the UK.

It’s already a bestseller in the Netherlands where it has garnered him the ear of prime minister Mark Rutte, who shares Teun’s mystification over why those with dementia are not treated like ordinary people.

Teun, quite simply, wants to change the thinking around the way society views people with dementia, and given that one in five people born in the UK this year will go on to develop dementia at some point in their lives, according to Alzheimers Research UK, it’s a conversation worth having.

“I am lucky because the care homes where I have lived understand my vision and my message. Both organisations have given me the trust and freedom to live here, advise ministers and talk to the media.”

The care home has also made it clear he is free to report on what he sees. Unfortunately, what he sees is a lot of fakery.

“For example, in this nursing home they have spent more than 20,000 euros on plastic fake plants because they were scared my housemates were eating real plants.”

Not only does he ridicule this suggestion, he is saddened by the “dead environment” that a preoccupation with risk management creates.

“We are so worried about safety that we are not letting people with dementia live a full life.”

Another example of this misplaced over-protectiveness is the so-called “magic table” his nursing home has invested in at vast expense.

“They had one in the last home I lived in too. Each costs 10,000 euro. Imagine you are sitting in your own home and at
a certain moment there are fish swimming on the table or butterflies whose wings will open if you tap them.

“We have created a surrealistic environment full of digital butterflies, while the doors of the real garden are locked because we are afraid that something will happen.

“We have to accept that life comes with risk. If we want zero risk, there is no room for life.”

Teun does not pay rent for his 11-metre square room, which used to be unused office space. “Instead, I pay in terms of time and involvement. My rent is humanity – it’s about doing things with my housemates. It’s about going shopping with them or going to a restaurant. We have no shortage of money or space in the Netherlands. What we have is a shortage of staff.”

But Teun is not a staff member, nor is he required to organise activities for his housemates. “It’s often about watching TV together or sharing a snack or a cup of tea; being part of a community and helping one another. I love it,” he beams.

“My role is not to be a manager to change things in this home, because I’m a resident. My focus is on societal change.”

And it is a two-way process.

“I don’t only fulfil the needs of my housemates. They fulfil my needs, for friendship and love. The most important lesson I have learned over the past three years is that people with dementia are still human.”

His own family were bemused when he revealed, aged 21, his plan to move into a dementia care facility despite being in rude health.

“My mother said she didn’t expect me to live in a nursing home before her. Now I never speak about it with friends and family. It’s completely normalised. It’s just my way of living, but the fact the media are so interested in me shows that we are not used to this integration.” Teun believes that this needs to change.

During the past few years he has also been working on a documentary, Human Forever, that will be the opening film for a G20 summit around dementia this October.

In it, he looks at how different cultures deal with dementia and what we can learn from them to make the future more inclusive.

He was struck by the care in Moldova where people with dementia are living alongside people with autism and young people with depression.

“They all have different needs, so they can help each other. All my housemates have a certain need but it is the same need so they cannot help each other. Not only should young and old live together, everyone should live more together.

“But when we put labels on people in our world, that is the way we exclude groups who do not fit the norm.” While studying, he says he learned methodology, techniques and theory, but being an equal housemate has taught him “to listen”.

But Teun, who is also working on a new book, admits that this isn’t a life that he will choose much longer.

“The documentary will be aired in October. That will be a good moment to continue my mission in another way. Living in a nursing home shouldn’t be my aim. My aim is to improve the quality of life of people living with dementia.”

• The Housemates by Teun Toebes (September Publishing, £12.99) is out now. Visit expressbookshop.com or call Express Bookshop on 020 3176 3832. Free UK P&P on orders over £25