Steven Demeester, the son of former minister Wivina Demeester (80), has died. He was born with Down syndrome and had early-onset dementia.
“He left peacefully in his sleep, but it’s hard because it’s too early,” his mother said. “Steven still had good moments. It is a comfort to us that he has been a happy guy.”
After he developed early-onset dementia, he could no longer live independently and moved to the Monnikenheide facility in Zoersel, near his parents. Young-onset dementia is a greater risk in people with Down syndrome, because they have not two but three times the 21st chromosome, which carries the hereditary predisposition to Alzheimer’s.
“I have often seen it happen to residents of Monnikenheide who had Down syndrome. I knew it was possible. But we hoped that Steven would escape,” Demeester said in this newspaper.
Independent for a long time
“About four years ago, before the corona crisis, the sheltered workshop announced that Steven could no longer follow,” Demeester said. “He worked there for 27 years. He went there by bus and tram, from Zoersel to Merksem. Another alarm signal: suddenly he was at the bus stop at midnight. That was a tough one for us, because Steven has been very independent for a long time.”
His life was intertwined with the provision in Zoersel. His parents are its founders. However, he still spent the day with them every Saturday and Sunday, Demeester said. “At the end of a day he says: ‘I’m going back home.’”
Monnikenheide was a pioneer in the care of people with disabilities – more than 50 years ago, many of them were still in psychiatric hospitals.
