There are currently approximately 290,000 people in the Netherlands with a form of dementia. About 15,000 of these people are under the age of 65. They belong to the group of young people with dementia.
Different in young people
This group is growing as the disease is better recognized today. “Previously, these people were often diagnosed with burnout or depression,” says Harro Seelaar of the Alzheimer’s Center in Erasmus MC. “The disease manifests itself differently in young people. For example, they are less often forgetful and, for example, more often have language problems. The disease also often develops faster in young people.”
–
–
That is also the case with Ray. He was diagnosed last October and was not living at home just six months later. “It hadn’t been going well for a while and Ray would take it easy with work,” says his partner Carola Renders (40). “He was self-employed and would take a few months for himself to recover and then go back to it with fresh courage.” But during that break, things really only got worse for Ray.
Lost debit card
During a family holiday to Ibiza, Carola realized that something was wrong. “There were several incidents. Once he left our 3-year-old daughter alone by the pool, while he went to a terrace with the other two. Once we were at a parking meter and Ray no longer knew how to pay. On the plane he couldn’t get his QR code to show up on his phone and on the plane he sat in the wrong seat, convinced it was the right one.”
–
–
What is dementia?
Dementia is an umbrella term for various diseases in which the brain can no longer process information properly. The most common form of dementia is Alzheimer’s disease, in which people suffer from memory disorders.
Vascular dementia is also very common. This form of dementia is caused by problems with the blood circulation in the brain. People with vascular dementia think, speak and act more slowly and have difficulty concentrating.
Older people often have one of these tee forms of dementia. Frontotemporal dementia (FTD) is also common in young people. The majority of people who get the disease are between the ages of 40 and 60. In FTD, people often have difficulty with speech and language and there are dramatic changes in behavior. Memory problems often come at a later stage.
Bron: Alzheimer Netherlands
–
–
Dementia had occurred to Carola, but she had never seriously considered it as an explanation for Ray’s behavior. The disease developed very quickly and at a certain point living at home was no longer possible. Ray moved into a nursing home. A decision Carola made ‘with a crying heart and love for the family’.
The situation in the nursing home is far from ideal. Only the elderly live there and there are few challenging activities for the physically fit Ray. “Before he came here, he moved a lot, but now it has almost completely stopped,” says Carola. “People here read the newspaper and listen to music, but it doesn’t match the interests and needs of a person in their forties at all. It’s not about the carers or the nursing home, those are treasures and they really think along with us. system just isn’t right.”
–
–
Too few options
According to Carola, that care system focuses too much on old people with dementia. She’s not the only one who thinks so. Christian Bakker, board member and chairman of the scientific council at the Knowledge Center Dementia at a Young Age agrees with her.
“There are about 39 care providers throughout the Netherlands that specifically target young people with dementia.” These care providers offer everything from home care to day treatment and residential areas. The problem is that with especially in the bigger cities and there are often waiting lists. “That means that this care is not always available to everyone in the immediate vicinity.”
Neurologist Seelaar also sees the problems. “It just depends on where you live whether there is suitable care. Especially if someone has to be admitted quickly, you don’t just have the right place.” The consequences are long waiting lists, long journeys or a regular nursing home.
–
–
Ray is on a waiting list for a nursing home for young people. The question is whether he can ever go there. “I really hope so, because it would also be much nicer for the children,” says Carola. “The eldest two don’t dare to go with them anymore, because they find the nursing home and the old people scary. They ask me why people are sleeping at the table with daddy.”
Psychological consequences
The consequences for the patient can also be significant, Seelaar knows. “Young people with dementia can have prominent behavioral problems and, on the other hand, suffer less from memory loss. So they do realize what is happening during a recording. If they sit in a place where they do not feel at home, this makes them unhappy, but often they can. these people do not express this well because of the disease, but also because they suffer from language problems, so you have a double effect, with far-reaching psychological consequences,” says Seelaar.
Frederique Ubachs, like Carola, has a man with dementia. Pieter was 55 when he was diagnosed and, unlike Ray, does live in a ward specifically for young people. However, the situation is not ideal for Frederique either. Pieter now lives in Zoetermeer, while she herself lives in Utrecht.
–
–
“It has been a very long search and in many places the youngest resident was 75. My husband was physically still very healthy and sporty, so that did not match the places where movement was like throwing a balloon. As a partner I now have more It’s restful that he is here among his peers. They do a lot of things, the decor is different, different music is played, it fits better.”
She takes the long car rides for granted, but it is not ideal. “You actually want a place for everyone near their own city, where people can pass more easily. There is simply not enough attention for it at the moment.”
–
–
Since 2021, the Ministry of Health, Welfare and Sport has started the National Dementia Strategy† Part of this is more research into young people with dementia. “The legislation, regulations and financing for people with dementia do not yet focus on young people,” says Bakker, of the Dementia at a Young Age knowledge center. “Precise research into bottlenecks in this group is now possible, so that’s hopeful.”
Understanding and attention
Frederique hopes for more understanding and attention for the group of young people with dementia. “It’s a degrading silent killer and there’s no medication, but we have to keep looking at what someone can still do.”
Carola is determined to continue to work for this group in particular. Not only for her husband and children, but also for other people with dementia and their loved ones. “It will never be beautiful, because it is a terrible disease that you do not wish on anyone, but it can be better.”
–
–
