More than 14,000 Dutch people have dementia at an early age: “We thought about exhaustion”

No. Lida’s world didn’t collapse when she heard that her 54-year-old husband, Yap, had been diagnosed with dementia. The puzzle pieces fell into place. And to be fair, in the years before her diagnosis, her world was already falling apart. little by little.

‘I’m too busy’

“We were running an agricultural business with two of our sons, growing arable produce and flower bulbs,” says Lyda (58). “He worked outside on the farm with the sons, and I managed, and I supported him. But my husband complained more and more about being too busy. He became more nervous, but when I asked him why, we couldn’t figure it out.”

He used to say all the time: “Now we are renovating the house, after the repair work it will be better.” And then: “We are busy with the harvest now, it will get better after the harvest.”

But she did not improve.

“We had more and more conflicts. And Jap pulled back more and more. It was as if everything didn’t care so much for him anymore. This is very difficult for your relationship, and for the children as well. I also noticed that I was increasingly choosing the side of our sons, if They have a difference of opinion about the company. I disagreed with my husband, because he couldn’t see her anymore.”

at this age? not at all

Yes, Lida noticed his behavior change. But dementia? at this age? Didn’t think about it. “We thought it was exhaustion, depression.”

It’s what you see “a lot,” says Marjolin de Vogt, professor of psychosocial innovations in dementia at Maastricht University Medical Center (MUMC+). “It takes an average of 4.5 years for people with early dementia to get a correct diagnosis.”

In the specific form, frontotemporal dementia, in which a behavioral change is one of the most obvious symptoms, it takes an average of 6.5 years before patients and families know what’s going on.

You can see the risk of developing dementia in the video below:

According to De Vugt, not many people know that early dementia often begins with a change in behavior. “Everyone associates it with forgetfulness. This is true for a lot of people who get the disease as they get older, but not always when people get dementia early, under 65.”

Syndrome

Young patients often have changes in behaviour, personality, emotions, or language problems.

As a result, many people, like Lida’s husband, have been diagnosed with depression or exhaustion. “And then they find out that the treatment is not appropriate. You often hear that people go on vacation to rest, for example, and lose the keys there, and become more confused. This is what happens when people with dementia are outside 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. That’s the conclusion scientists from Alzheimer Centrum Limburg reached after a major study published today in a leading magazine.

“And that number is only the bottom line,” says de Vogt, who was involved in the study. “The number may be much higher, but a lot of people don’t even know they have dementia because of incorrect diagnoses.”

Lida says it was very hard for the family not to know what was going on. “Because of all the quarrels, our relations deteriorated. I couldn’t talk to Yap about it either, because his sympathy was much less. Only when we noticed he was having problems with language and facial recognition, he couldn’t find words anymore, we thought: Maybe another thing “.

lost words

Lida says it hurts 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. This is really the case in our case. Yap insists: Everything is not so bad.”

“Diagnosis is critical,” says Professor de Vogt. “Young people often have different roles. They are parents to children who live at home, have another partner, and are still working. If dementia is not recognized and seen in time, the damage is great.”

About to get divorced

At the MUMC+ Memory Clinic, De Vugt talks to people who are no longer functioning properly at work and who are eventually fired, left at home. While they should have ended up accruing sickness. She knows people who have been on the verge of divorce because the interest in the partner is completely gone. Another hallmark of dementia. “But then you should know.”

Families should receive counseling, and what dementia is doing to their father or mother should be explained, says de Vogt. And GPs and company doctors should be aware of the red flags. Is treating fatigue or depression not helping? Are complaints getting worse? Do they run in the family? Can someone suddenly stop doing routine things, like emptying the dishwasher? Then there More research is needed.”

After examining Yap’s brain, there was a certain amount of peace.

“Our life goes on. It’s not that our lives have changed because of the diagnosis. Our kids run the business, I run the family, our family life, I plan everything. We’re fifty-eight now, we don’t know what’s going to happen next, how long can my husband still live in? home. We find support in our faith and the large social network we surround ourselves with of family and friends.”

And she impresses herself: This is not Yap, this is the disease. “Although it is difficult, he is still a beautiful person.”