OMAHA, Neb. -- As more Nebraskans with Down syndrome are developing early-onset Alzheimer's disease, the system is unprepared to treat them.

Tom Benek, 51, has Down syndrome and was recently diagnosed with Alzheimer's disease that made him defiant, withdrawn and forgetful. It also made his behavior worse.

"It was four weeks of total frenzy," said sister Kathy Dougherty. "What can we do? What are we going to do with him? How are we going to handle it?"

Down Syndrome Causes

Benek's elderly parents can no longer care for him and they said help is hard to find. Every Alzheimer's facility the family called refused to take Benek because he was under the age of 55. None had experience treating someone with Down syndrome.

"It's heart-tugging for parents and siblings," said Patricia Bennett, of the Alzheimer's Association.

Bennett said she has been hearing from more families in the same situation. She said research suggests that because of a possible genetic link between Down syndrome and Alzheimer's, more cases will emerge.

Parent-To-Parent Support

"Not only do they have chromosome 21, they've got three copies of it, which increases anywhere from three to five times the risk of developing it," Bennett said.

She said as more people with Down syndrome live longer, resources haven't caught up with it.

The Marquis Place in Elkhorn ultimately accepted Benek. The facility has a special memory care unit for dementia and Alzheimer's patients.

Executive director Sheila Ladd said Benek is its first-known patient with Down syndrome.

"We felt very strongly that this family needed to be supported and offered some opportunity to have care for him regardless of Down syndrome diagnosis," Ladd said.

Benek is starting to adjust to his new home but still suffers from mood swings. The staff at The Marquis Place said the goal is to take the bad days as they come, support Benek's family and try to give him the best life possible.

"There's still much living to be done and a quality of life to be had," Bennett said.