She forgot a lot, Bert Hartoch’s mother-in-law. “But when she sat in my car on the folded back of the passenger seat instead of the back seat, and then stared out the back window for a long time, we knew it wasn’t right.”
In the early eighties she was admitted to the Provincial Hospital Noord-Holland in Bloemendaal. That name, ‘provincial hospital’, concealed the true nature of the institution: it was an institution. Elderly people with dementia were accommodated in their own ward; the eight of them slept in a hall, and each had one cupboard for his things. During the day, Hartoch’s mother-in-law hung in a chair. “Nothing, absolutely nothing, was done with her and the other patients. It was waiting for death.”
Today, dementia is called ‘public disease number one’ or, even more ominously, ‘the epidemic of the 21st century’. “One in five people is expected to receive the diagnosis,” says Anne-Mei The, professor by special appointment of long-term care and social approach to dementia at VU Amsterdam. But dementia was not always an epidemic. “For a long time it has been considered a minor illness.”
Alzheimer’s, the most common form of dementia, is also a relatively young disease. It was not described as such until 1906, by the German psychiatrist and neuropathologist Alois Alzheimer. His patient was a fifty-year-old woman who was admitted to a psychiatric facility in Frankfurt am Main. But it would be decades before dementia became a household name. Until then, people were childish, senile or just, a little crazy. And just like in Frankfurt am Main, people with dementia were regularly locked up in an institution.
The 89-year-old Bert Hartoch can talk about it. His family worked for the Noord-Holland Provincial Hospital for generations; his family history is intertwined with the history of psychiatry in the Netherlands and therefore also, in part, of dementia.
Looking for missing residents
His grandfather worked in the hospital warehouse around 1900. There were hardly any medicines, Hartoch says, and patients regularly passed out. “The keepers were burly fellows who could hold them down.” During the airing, in the garden, the residents called each other names. Sometimes they pelted each other with their own excrement. “On Sunday the team from Haarlem came to see it. In the end they diverted the road. People couldn’t get to it anymore.”
His father installed the electricity on the property, while his mother looked after the residents. In those years the population grew considerably; by the time World War II broke out, it was home to some 1,400 patients. They had to leave when the Nazis arrived. Most went east, where several hundred died of exhaustion and lack of food.
Bert Hartoch started working for the hospital in 1962, as a park ranger. In addition to maintaining the estate, he also tracked down missing residents. Medications had calmed down the patients by now, most of them roamed free, and if anyone was missing at the end of the day, Hartoch would search. “Then I found another woman like that, she stood in front of a gate and couldn’t go back, because she didn’t know how she got there, but she couldn’t go any further, because she no longer remembered how to open a gate. ”
He often took his dog with him on such quests – he could smell bad, but he could see well. “It detected everything that didn’t belong on the property, from a plastic bag to a man hanging from a tree.” Because yes, that’s what Hartoch did: he looked for the residents who ended their lives on the extensive grounds or in the Kennemer dunes behind it. In his forty years of service he has knotted ‘dozens’ from trees or removed them from the lake. In some periods as much as one a week. Although, he hastens to say, not all of them were people with dementia.
Talk show about dementia
The shift in thinking about dementia as a disease started in January 1984. Then TV presenter Koos Postema presented a talk show about dementia, with stories from patients and their loved ones, from doctors and researchers. “More than twenty thousand reactions came, mostly from people who recognized the stories and who were in the same situation,” says Julie Meerveld of Alzheimer Nederland.
1984 is a special year for dementia in several respects. In that year appeared chimeras van Bernlef, which is still regarded as the ultimate novel about dementia, although some literary scholars claim that Shakespeare’s King Lear is the first and most important ‘dementia novel’. And in December 1984 Alzheimer Nederland was founded.
From that year on, the disease has become the subject of debate, says Anne-Mei The. At the insistence of psychiatrists and neurologists, dementia first and foremost became a brain disorder; under the influence of the increasing aging of the population, it subsequently became a common disease.
The major impact on daily life put the disease on the map, according to The. And after that? “Dementia became a political problem, politicians made money available, the pharmaceutical industry saw opportunities, delta plans were introduced and people with dementia were suddenly called patients.”
There are currently just under three hundred thousand people with dementia in the Netherlands – an estimated seventy percent of them have Alzheimer’s disease. They don’t get any better – The even wonders if there will ever be a medical cure for the disease. “Maybe it’s part of getting older.” She therefore advocates a different approach to dementia: focused on people instead of on the patient, on the inner and outer world instead of on the disease. This can be done by looking at what someone with dementia can still do (“Because that’s what they want, to remain independent”) instead of what not.
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Also read: Dementia turns life upside down
Julie Meerveld of Alzheimer Nederland also sees the solution in this. Because there may be no medication yet, we can ensure that dementia progresses less rapidly. “We saw it during corona. When people with dementia no longer saw anyone, their condition deteriorated more quickly.”
It is important that people continue to live in their familiar environment for as long as possible and participate as long as possible, they say at Alzheimer Nederland. To this end, care visions must be developed, homes built, neighborhoods become dementia-friendly and meeting places created.
There are also simple solutions. “A hall like that in a flat with four equal doors leading to the kitchen, bathroom, bedroom and living room, that’s not convenient,” says Meerveld.
Ghosts every night
Bert Hartoch’s wife, Greet, was diagnosed with dementia in 2012. Hartoch: “She only thought about her mother, hanging in that chair at a table.” So no, she didn’t want to go to a shelter. Hartoch then decided to take care of his wife himself, „but she was haunted every night and after a year I was a total loss. Our sons said: It is no longer like this. Then she went to a retirement home, with special care for people with dementia.”
She had a good time there, he says. Their own room, sweet caretakers and every day something was done: then they watched a movie or sang songs. And as the end drew near, he was called: it won’t be long now, you better come. That, too, was different from his mother-in-law’s – there, he and his wife only received a phone call that she had been found dead in bed that morning. He was spared that phone call. “When my wife left, I held her hand.”