The first time Sharon Specht suspected that something might be wrong with her husband, Robert, was about three years ago, when she noticed him having difficulty performing little tasks.
"The first thing I noticed was that he couldn't tie a tie," said Specht, 60, of Hawthorn Woods. "And then he was often repeating questions that he asked. And then he lost his job, and didn't want to try and find a new one."
Upon visiting their family physician, it was recommended that Robert, then 58, go to a neurologist for testing. In February 2009, the neurologist confirmed Sharon's worst fears.
"It was sort of like being hit in the chest with a brick wall," Sharon said. "I knew something was not right, but I really did not expect that diagnosis. I never expected it at such a young age."
Robert had been diagnosed with Alzheimer's disease, an irreversible, degenerative brain disease mostly found in people age 65 or older, which destroys memory and cognitive functioning.
That Robert was diagnosed with Alzheimer's while in his 50s was unusual because the vast majority of sufferers don't start to experience symptoms until they reach age 65 or older. But such cases do occur, with some diagnosed while in their 30s and 40s.
The condition is known as early onset or young onset Alzheimer's. It's estimated to make up about 5 percent, or 250,000, of the roughly 5 million cases of Alzheimer's across the nation.
Similar to those affected later in life, symptoms for young-onset sufferers can include memory loss, an inability to solve problems and poor judgment, as well as a sudden change in mood or personality.
But even those who exhibit such obvious symptoms can often be misdiagnosed because of their age, said Susan Frick, a social worker at Rush University Medical Center who works with young-onset Alzheimer's patients.
"For people who are young, it won't always get recognized and it can take several months and take several different doctors," Frick said. "It can take a while for people to realize that it's Alzheimer's disease because you just don't expect to see it in someone who is in their 40s or 50s."
Frick helped co-found Without Warning, an Alzheimer's support group recognized as one of the first in the country designed specifically to address the needs of young-onset patients and their families.
April marked the seven-year anniversary for the group, which Frick said began at the behest of an Alzheimer's patient diagnosed in his early 50s who wanted a place where he could meet fellow sufferers around his own age.
"There's a need out there," Frick said of support for younger Alzheimer's sufferers. "We've really found that providing the opportunity for them to be able to connect and make friendships is so important because it's hard for them to meet other people that are going through the same experience."
Seeking out or maintaining a social network can be an especially vital component for young-onset Alzheimer's sufferers, said Dr. Diana Kerwin, an assistant professor of Northwestern University's Feinberg School of Medicine and a physician at the school's Cognitive Neurology and Alzheimer's Disease Center.
"The young-onset (sufferers) are faced with really very significant challenges if they're still in the workforce," Kerwin said. "Oftentimes, they're still raising their children. So they really need … a support group with skilled, trained social workers in order to assist them in what they should do in some areas, such as whether they should go on disability in regards to their career, and other factors like that."
Meetings for Without Warning are held monthly at St. Peter's United Church of Christ in Elmhurst, and are open to both sufferers within the early stages of the disease and those whose conditions have made speaking difficult.
In addition to the monthly meetings, Frick said the group expanded to create support groups for children of young-onset Alzheimer sufferers, many of whom are still young adults or small children.
"My friends from college are not going through this, so they don't always understand the difficulties of the disease," said Robert and Sharon Specht's daughter Sarah, 25. "In support group, the kids my age really understand because their dads or mothers are going through it. It's good to hear what other people are experiencing and how they're able to cope with it."
Kerwin said family history can play a big part in determining whether someone is at increased risk for young-onset Alzheimer's, with sufferers tending to have a fairly strong family history of the disease.
"The familial Alzheimer's disease typically tends to be a young-onset Alzheimer's disease," Kerwin said. "It accounts for about 50 percent of all of the young-onset."
Even though genetic testing is available to discover whether children of young-onset Alzheimer's sufferers may be predisposed to the disease, for now, Sarah Specht said she preferred not to know.
"I just want to live my life and see what happens," she said.