No. Lyda’s world did not collapse when she heard that her husband Jaap, then 54, turned out to have dementia. Puzzle pieces just fell into place. And, to be fair, in the years before the diagnosis, her world was already crumbling. Little by little by little.
‘I’m so busy’
“We ran an agricultural company with two of our sons, we grow arable products and flower bulbs,” says Lyda (58). “He worked outside on the farm with the sons, I did the administration, supported him. But my husband complained more and more that he was so busy. He became more stressed, but when I asked him why it was, he we can’t figure it out.”
He said all the time: ‘Now we are renovating the house, after the renovations it will be better’. And then: ‘We are busy with the harvest now, it will get better after the harvest’.
But it didn’t get any better.
“We had more and more conflicts. And Jaap withdrew more and more. It seemed as if everything no longer interested him so much. That is very difficult for your relationship, and for the children too. I also noticed that I was increasingly on the side of our sons chose, if they had a difference of opinion about the company. I disagreed with my husband, because he just couldn’t see it anymore.”
At that age? not at all
Yes, Lyda noticed his behavior changed. But dementia? At that age? Never thought about it. “We thought it was a burnout, a depression.”
That is what you see ‘very often’, says Marjolein de Vugt, professor of Psychosocial Innovations in Dementia at the University Medical Center in Maastricht (MUMC+). “It takes an average of 4.5 years for people with early dementia to receive the correct diagnosis.”
In a specific form, fronto-temporal dementia, where behavioral change is one of the most obvious symptoms, it takes an average of 6.5 years before patients and families know what is going on.
You can see the risk of dementia in the video below:
According to De Vugt, many people do not know that early dementia often starts with behavioral change. “Everyone associates it with forgetfulness. That’s true for many people who get the disease when they’re older, but not always when people get dementia early, under 65.”
Young patients often struggle with changes in behaviour, personality and emotions or language problems.
As a result, many people, like Lyda’s husband, are first diagnosed with depression or burnout. “And then they find out that treatment is not appropriate. You often hear that people go on holiday to rest, for example, and lose keys there, become more confused. That is what happens when people with dementia are out of their familiar environment.”
It is now clear for the first time how many people develop dementia before the age of 65. There are between 14,000 and 17,000 in the Netherlands, and nearly 4 million worldwide. This is the conclusion of scientists from the Alzheimer Centrum Limburg after major research that is published today in a leading journal.
“And that number is only the lower limit,” says De Vugt, who participated in the study. “The number is probably much higher, but many people do not yet know that they have dementia due to incorrect diagnoses.”
It was very difficult for the family not to know what was going on, Lyda says. “Because of all the conflicts, our relationships deteriorated. I couldn’t talk to Jaap about it either, because his empathy was a lot less. Only when we noticed that he was having problems with language and facial recognition, that he couldn’t find the words anymore, we thought we: maybe it’s something else.”
It hurts, Lyda says, to see someone you love so much. “He has no awareness of the disease himself. Someone once said to me: the patient has the disease, the environment suffers from it. That is really the case in our case. Jaap persists: everything is not too bad.”
“A diagnosis is crucial,” says professor De Vugt. “Young people often have different roles. They are parents of children living at home, have another partner, are still working. If dementia is not recognized and seen in time, the damage is great.”
About to get divorced
At the memory clinic of the MUMC+, De Vugt speaks to people who no longer functioned properly at work, and who were eventually fired, were left at home. While they really should have ended up in the sickness benefit. She knows people who were about to get divorced because the interest in the partner was completely gone. Another hallmark of dementia. “But then you must know.”
Families must receive guidance, children must be explained what dementia does to their father or mother, says De Vugt. “And general practitioners and company doctors must be aware of the red flags. Does treatment for a burnout or depression not help? Do the complaints get worse? Does it run in the family? Can someone suddenly no longer do routine things, such as unloading the dishwasher? ? Then further research needs to be done.”
After Jaap’s brain scan, there was a certain amount of peace.
“Our lives go on. It’s not that our lives have changed because of the diagnosis. Our sons run the business, I run the household, our family life, I plan everything. We are both 58 now, we don’t know what will happen next, how long my husband can still live at home. We find support in our faith and the large social network that we have around us, of family and friends.”
And she impresses herself: this is not Jaap, this is the disease. “Even though it’s hard, he’s still a beautiful person.”