NOS News•today, 4:48 PM
Today, the Alzheimer Center Amsterdam is launching a digital platform for children between the ages of 4 and 18 with a parent with dementia. On the Brain Ghosts website, children can find information about what dementia is and how they can deal with it.
“We actually don’t see the children much, but we do hear from parents how the children are doing. It became clear that this platform was necessary,” says neurologist and Medical Director of the Alzheimer Center Yolande Pijnenburg.
It is estimated that in the Netherlands at least 15,000 people between the ages of 40 and 65 have dementia. “It could also be 25,000, because we haven’t even counted them properly yet,” says Pijnenburg.
“If dementia occurs in a family among people at a relatively young age, there is little attention for the child,” says Pijnenburg. For example, children do not go to hospital appointments, but they do have to deal with the consequences of dementia at home.
Pijnenburg says he has received many positive reactions to the creation of the platform. “If only this website had existed earlier, I could have helped my child with this,” she quotes one of the responses.
The website is not only for children, but is also intended to help parents, teachers and care providers to talk to children about their parent with dementia.
“The entire cohesion within the family changes,” says Pijnenburg. The parent with dementia is unable or less able to care for the children, and the partner becomes an informal caregiver. “The child often starts to behave as an informal caregiver and is given a great deal of responsibility. This also means that children can no longer be so carefree children.”
The website for children explains this change by describing the family as a puzzle. “The puzzle piece of your father or mother with dementia has changed. As a result, the puzzle is no longer correct,” the website describes the changes. Breinspoken also provides tips on how to deal with the emotions this can evoke.
“The attention is often paid to the person with dementia, but not to the people around him or her,” says Hendrik-Jan van der Waal, chairman of the FTD fellow sufferers association. Frontotemporal dementia (FTD) is a relatively rare form of dementia, which often affects people at a relatively young age.
FTD fellow sufferers manages a closed Facebook group where children can talk to fellow sufferers. The group is used, but children often have a greater need to be together and not necessarily to actively ask questions, says Van der Waal.
They do have those questions, says Van der Waal. “For example, about dementia itself or about how they can deal with their parent.” Yet they don’t always ask those questions themselves, he says. He therefore thinks the Alzheimer Center’s website is a good way to reach children.
Van der Waal notices that children are often ashamed of their parent with dementia. Pijnenburg also hears this from parents. Sometimes children no longer want to meet up with their friends at home. “Because the parent says something that you can really be ashamed of,” says Pijnenburg.
In addition, some children develop a great sense of responsibility. “Which can cause children to become gloomy, or far too serious, or lead to poor school performance,” Pijnenburg sums up.
Pijnenburg: “The website certainly shows you that it is something that can happen to you. And also that you are not the only one.”