Diagnosed in his 50s, supported by family and friends, John Frei is adapting.
John Frei (right) chatted with two of his grandkids at a family dinner at his home. Frei and his family are figuring out how they need to adjust to the changes that young-onset Alzheimer’s has already caused, and the changes that will come.
At first it was little things -- conversations forgotten, details neglected -- that warned of the devastation to follow for John Frei.
A project manager who built homes and then banks for a living, he was still in his early 50s and didn't notice the changes.
But his colleagues did. So did his three children and his wife, Joanne. "John became very quiet and withdrawn,'' Joanne said. "Not his normal, happy self."
For a year, his doctors offered lots of wrong guesses until a three-day visit to the Mayo Clinic last October confirmed the diagnosis.
"It may sound strange," Frei said, "but it was a huge relief to find out I've got Alzheimer's."
Now 56, Frei is part of an unusual but growing group: roughly 200,000 Americans under age 65 with young onset Alzheimer's disease. They represent about 4 percent of the 5.4 million people diagnosed with the progressive brain disease, for which there is no known cure.
"It's young for a diagnosis, but perhaps not so rare for people who actually have Alzheimer's and may not know it," said Dr. Ronald Petersen, director of the Mayo Alzheimer's Disease Research Center, who has specialized in detecting early signs of memory loss. "The signs can be there for years," Petersen said, "but often patients -- even doctors -- hope and wish that it's something else.''
The number of Minnesotans with Alzheimer's is expected to rise from about 94,000 today to 198,000 in the next 30 years as baby boomers age -- a number that could go higher now that public health officials, nationally and locally, are pushing for early diagnosis.
The disease worries policymakers because it is a major force driving up outlays for long-term care in Medicaid, a federal-state program whose costs are soaring.
Alzheimer's is also the second most-feared disease among the general public behind cancer, according to a recent Harris Interactive survey for the MetLife Foundation. Some 31 percent of respondents worry they'll get it, and 23 percent worry they'll have to care for relatives who get it.
'Live like I can beat this thing'
Like many others with the diagnosis, Frei and his family are figuring out how they must adjust to the changes that will come.
For now, his symptoms are mild. He occasionally has confusion with numbers, and sometimes repeats the same thought within a few minutes of conversation.
But helped by Aricept, a medication that eases symptoms for some patients for a time, he's regained the threads of gentle humor, frequent laughter and quiet introspection that make him John.
One Sunday, at their monthly family meeting around the dining room table, Frei interrupted the rhythm of laughter and serious talk to make it clear to his wife, son, two daughters and two sons-in-law where he stands.
"Look, I know there's usually a lot of doom and gloom connected with this, but that's not the way I am. That's not the guy I've ever been," he said. "We need to plan for whatever, but I'm going to live like I can beat this thing."
"This is about attitude," he said later. "I can't tell you much about five years from now. My focus is on making today count for something.''
He takes daily 20-minute walks to keep his body fit, and exercises his mind with 30-minute workouts on the website lumocity.com, using games designed to fight cognitive decline. He and Joanne are taking a Park Nicollet course called Memory Club for people and caregivers dealing with early-stage Alzheimer's. On Mondays and Fridays he attends men's prayer breakfasts.
Everyone around him knows he has Alzheimer's.
"John is such a good guy," said Rich Skoglund, a friend for 25 years who, with Frei, started one of the prayer gatherings and invited his friend to join him at the food shelf. "The fact that he has Alzheimer's doesn't change his heart."
Reaching for support
Young-onset Alzheimer's can be particularly devastating because it often slams into people at the peak of their career, just as they are launching their kids, or around the time they are planning a golden retirement.
Unlike many diagnosed in their 40s or 50s, Frei was not fired from his job. He used to build houses, and for almost a decade was a regional project manager at Wells Fargo, supervising construction and remodeling of banks in 13 states.
"I thought I was doing fine, but I probably wasn't," he said.
After forgetting details of conversations on the job, for example, he tried carrying a tape recorder, but never got it to work right.
In late 2009, members of his unit were laid off after the bank's merger with Wachovia. His symptoms were growing worse -- anxiety, growing confusion and withdrawal from people. While he looked for a new job, he also started going to doctors.
"We all were grateful when we finally got the diagnosis," said his son, Peter, 27. "As hard as that is, now we understand what was happening and we can figure out what to do."
An early diagnosis can deliver a double blow -- medical and professional, said Denise Wickiser, a support group coordinator at the Alzheimer's Association Minnesota-North Dakota Chapter.
"If you get a diagnosis quick enough, the Americans With Disabilities Act can help," she said. "But often the person is just let go -- a blow to your sense of self-worth just when your world is falling apart."
Joanne intends to continue in her job as a school technical support specialist, "partly to boost our income since John isn't working, partly for health insurance for both of us, and also because I really love it," she said. She works close to their home in the Twin Cities suburbs and often goes home for lunch with her husband.
Friends gladly step up to help when needed, as when John stopped driving in August.
"Our faithful and supportive friends have come forward to drive and we are so thankful and grateful," Joanne said.
Joanne attends the only support group in the Twin Cities for caregivers of people with young-onset Alzheimer's. All three kids attend a new group for children of people with dementia. Frei also has attended The Gathering, a twice-a-month day program for people with mild or moderate memory loss. Five of the eight participants have young-onset Alzheimer's.
At home with his wife, Frei talked about the future. "We hadn't figured out earlier what we'd do in retirement,'' he said. "But whatever it would have been, this isn't it."
There will be some additional mourning to come over that changed future, his wife said. But first there are the other thing on their checklist: legal, financial and health care planning.
"What John is teaching us is to really enjoy today, to savor the moment," she said. "We've always kind of done that, but now we are so aware, and so grateful."
John remains upbeat.
"I'm the same guy I've always been," he said -- then added, flashing a grin, "at least as far as I can remember."
This article previously appeared in the Star Tribune.