Teun Toebes has been living in a nursing home for a year now and he wrote a book about it: Nursing Home. It became an indictment about how we deal with people with dementia. “I would absolutely do it again, but I underestimated it.”
He hopes to improve the lives of people with dementia with his book. “You cannot bury your head in the sand. Everyone will have to deal with it at some point. The number of people with dementia is increasing rapidly in the Netherlands. Now there are 290,000 and in 2040 more than half a million people will be living with dementia. If I don’t think about it now and help change things, I’ll have to experience it myself later, but then my vote will be worth nothing.”
Closed doors
Something that Teun encounters, literally, are the closed doors in the Utrecht nursing home. They are nicely covered with photos of the Utrecht canals.
“But the residents can’t go to the real canals. The world stops at these doors for people with dementia. You need a code to get out and they don’t have one.”
Excluded
Teun believes that too little is being discussed with the residents about what they want. “What does mother herself want? We don’t ask her this, because we do not consider people with dementia to be equal at all,” he says.
“We exclude them from society and I find that very bad. My roommates in the nursing home are such wise people. I have learned so much from them. They feel so well whether they are excluded or not.”
Ad has dementia and has been living in a nursing home for a year: this is how he experiences it himself – video
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Should we treat people with dementia in a nursing home differently? Often decisions are made for someone, but not often with the resident. Ad van Dokkum has been living in a nursing home for a year now and, together with son Dennis, tells about his experiences.
Dilemma
“Teun exposes a few important things,” says Martin den Hartog, chairman of the Board of Directors of AxionContinu, which includes the nursing home where Teun stays. Den Hartog takes Teun’s criticism seriously. He would prefer to let all residents choose for themselves, but that is not always possible, he says.
“You have to deal not only with the person in the nursing home who wants freedom, but also with the family who wants to prevent a fall. And with society that asks us to do things a certain way. Freedom versus safety, that is a dilemma, but sometimes I do feel that the emphasis is very much on safety.” In addition, Den Hartog agrees with Teun that there are a lot of rules. “That should be a little less.”
More dementia-friendly society
Outgoing Minister of Health Hugo de Jonge agrees that there are many rules in nursing homes. Can something be done about that? “Yes, many rules have been devised by professionals in the healthcare sector themselves. The great thing is: if rules have been devised yourself, you can also get rid of them. Rules work a bit like self-rising flour; if you want to get rid of them, you have to do your best , but it’s possible.”
De Jonge also agrees with Teun that people with dementia are too often talked about and not with them. “You are not your diagnosis. People still talk too often about ‘demented people’. Communicating at eye level and showing that someone belongs is our major task. Alzheimer’s is becoming the number 1 disease, so we as a society will really have to become more dementia-friendly .”
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What’s the price?
Whether you opt for freedom or safety is a dilemma for De Jonge, just like for nursing home manager Den Hartog. “Closed doors, not being able to go to the store whenever you want; people with dementia are always confronted with everything that is not allowed. That causes a lot of frustration.”
“On the other hand, you can’t afford that people just go into the neighborhood with unsafe situations as a result. We want to prevent people from falling, because a fall and fracture of a hip heralds a long phase of immobility. Teun asks the question : ‘Do you want to avoid all suffering and at what cost?’ We’re talking about that now, thanks to him and his roommates.”
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Brinta with or without sugar
Although they agree with much of Teun’s criticism, Den Hartog and De Jonge also have reservations about some points. The fact that Teun sometimes compares the state of affairs in the nursing home with a ‘totalitarian regime’, finds Den Hartog fierce. As far as he is concerned, a lot has changed and improved compared to the past.
“When I was Teun’s age, I worked as a nurse in a nursing home where there were ten people in a ward. The beds were separated with partitions. Same bedside tables, same beds. And there was a menu: in the morning you could choose between brinta with sugar and brinta without sugar.”
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personalized care
And according to De Jonge, we in the Netherlands are blessed with exceptionally good nursing home care. “I see a lot of nursing homes really doing their best to deliver person-centered care.”
“They put a lot of work into that. More than 40,000 people have joined, against the current. I don’t want to do injustice to that reality. But,” he emphasizes, “I also don’t want to detract from Teun’s observation that things could be done better. .”
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Looking in the mirror
Den Hartog has no regrets that he has brought Teun into his home. “It is very special to have such a young boy in the house. He teaches me that we have to listen even more to the voice of the resident.” What touches Den Hartog is Teun’s involvement. “That someone who is at the heart of society comes to live here and holds up this mirror to us.”
But that mirror must also be held up to society and the neighbourhood, says Den Hartog. “Because when you go shopping, what do you take with you to take a resident who also likes to go to the store? I really want to make an appeal to everyone who lives near a nursing home: come by After all, they’re your neighbors.”
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