No. Lyda’s world did not collapse when she heard that her husband Jaap, then 54, had been diagnosed with dementia. Puzzle pieces just fell into place. And, to be honest, in the years before the diagnosis, her world was already in the pants. Little by little.
‘I’m so busy’
“We ran an agricultural business with two of our sons, we grow agricultural 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 stressed, but when I asked him why it was, we can 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 now doing the harvest, it will get better after the harvest’.
But it did not get better.
“We had more and more conflicts. And Jaap pulled him back more and more. It seemed like everything was not so much interested in him anymore. That is very difficult for your relationship, and also for the children. I also noticed that I was more and more on the side. of our sons chose when they had a difference of opinion about the business. I did not agree with my husband because he just could not do it anymore. “
At that age? not at all
Yes, Lyda noticed that his behavior changed. But demented? 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, frontal-temporal dementia, where behavior change is one of the most obvious symptoms, it takes an average of 6.5 years before patients and families know what is happening.
You can see the risk of dementia in the video below:
According to De Vugt, many people do not know that early dementia often begins with behavior change. “Everyone associates it with forgetfulness. That’s true for many people who get the disease when they are older, but not always when people get early dementia, under 65 years of age.”
Young patients often struggle with changes in behavior, personality, and emotions as well as 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, and there, for example, lose keys, become more confused. That is what happens when people with dementia from their familiar environment are. “
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 almost 4 million worldwide. This is the conclusion of scientists from the Alzheimer’s Center Limburg after great 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 still do not know they have dementia due to misdiagnosis.”
It was very difficult for the family not to know what was going on, says Lyda. “Because of all the conflicts, our relationship deteriorated. I could not talk to Jaap about it either, because his ability to empathize was a lot less. Only when we found out that he had problems with language and facial recognition, that he could not find the words more, we thought: maybe it’s something else. “
It hurts, says Lyda, to see someone you love so much. “He himself has no awareness of the disease. Someone once said to me: the patient has the disease, the environment suffers from it. That is really the case in our case. Jaap continues: everything is not too bad. ”
“A diagnosis is crucial,” says Professor De Vugt. “Young people often have different roles. They are parents of children who live at home, have another partner, are still working. If dementia is not recognized and seen in time, the damage is great.”
About the divorce
At the MUMC + memory clinic, De Vugt speaks of people who were no longer doing well at work, and who were eventually fired, were left at home. While they actually should have been in sick pay. She knows people who were divorcing because the interest in the partner was completely gone. Another characteristic of dementia. “But then you have to know it.”
Families need guidance, children need to be explained what dementia does to their father or mother, says De Vugt. “And GPs and doctors of the company need to be aware of the red flags. Doesn’t treatment for a burnout or depression help? Are the complaints getting worse? Is it running in the family? Can one suddenly stop doing routine things,” like unloading the dishwasher ?? Then further research needs to be done. ”
After Jaap’s brain scan, there was a certain amount of peace.
“Our life goes on. It’s not that our life has changed by the diagnosis. Our sons run the business, I run the household, our family life, I plan everything. We’re both 58 now, we do not know what will follow then, “how long can my husband still live at home? We find support in our faith and the great social network we have around us, from family and friends.”
And she makes an impression: this is not Jaap, this is the disease. “Even though it’s hard, he’s still a wonderful person.”