Julie Allen was diagnosed with Alzheimer's disease two years ago. Then 57, she thought her memory lapses had a lot to do with being a woman in her 50s.
"It's just menopause," Allen recalled thinking. "Everybody gets that. You know, some people are crazier than others, and they have different symptoms that go with that."
Sometimes Allen would forget to grab her grocery bags as she was leaving the store. In other moments, she would become distracted while plucking items from a rack and buy clothes that were far too small for her.
These memory lapses have been occurring for years, but Allen, of St. Anthony, Minn., can no longer remember when they started. When she tries to reconstruct the timeline of her illness, she forgets everything before her diagnosis, leaving her husband, Tom Allen, to quickly fill in the blanks.
"Actually, you were already asking your doctors about memory loss at age 52," he reminds her. "So it was five years prior to that point that you had already been asking doctors about not remembering as much, and you went through lots of different tests."
This spring, the Obama administration launched a national Alzheimer's plan that devotes millions of dollars more in research money to the most common form of dementia. The federal initiative adds to work already under way in Minnesota to prepare the state for an expected surge in Alzheimer's cases as baby boomers retire.
Minnesota's population of Alzheimer's patients is expected to double over the next 30 years, to 200,000 people. According to the Alzheimer's Association, by age 65, 1 in 8 people has the disease. Among people over 85, nearly half have it.
One of Minnesota's main goals is to identify the disease much earlier so patients can get better care and their families can make smarter financial decisions. Another is to provide more support to overwhelmed caregivers, so patients can live with their families for as long as possible.
The Allens and another Minnesota family say their experience coping with Alzheimer's would have been much better if there had been a clearer road map to guide them along the way.
Tom Allen finds it a baffling that it took his wife's family doctors five years to diagnose her Alzheimer's. He said she informed them that the condition ran in her family and even asked them at one point if they thought she had the disease.
He understands that she may have seemed too young to have Alzheimer's, as most people are diagnosed after age 65. But he said there were plenty of classic signs that should have pointed her physicians in the right direction.
"I don't think doctors are very well-trained yet to spot what this is," Tom Allen said. "I don't expect them to be neurologists. That's why they have neurologists. But I do think awareness, understanding and more in-depth knowledge of this disease is required throughout the whole system."
For the Allens, those five years without a diagnosis were a lost opportunity. If they had known earlier, Tom Allen said, they would have saved money to cushion the financial blow that was coming when Julie could no longer work.
Instead, the Allens had to slash their spending when Julie unexpectedly quit her job as a project consultant after experiencing a debilitating panic attack. The sudden loss of her income forced the Allens to sell their town home and move to a small apartment.
Tom Allen also had to change jobs. His demanding schedule as executive director of a nonprofit wasn't giving him the flexibility he needed to care for his wife, so he quit and took part-time work at a spirituality center. He also vacuums the hallways in his apartment complex and spends Saturdays in the leasing office to receive a deduction on their rent.
"I'm shifting my energy and my time, and I'm not making as much money," he said. "It's really difficult to make that work."
Such struggles can happen to anyone diagnosed with a life-threatening disease, but they are especially common among Alzheimer's patients and their families. The intense level of care patients need and the typically years-long duration of the disease put an enormous strain on family budgets -- particularly because standard health insurance policies do not cover much of the care giving.
The Alzheimer's Association estimates that over the course of the disease, which could last a decade or more, patients spend an average of $175,000 out of their own pockets -- not including contributions from family members.
Health insurance plans only cover drugs that could delay the symptoms of Alzheimer's and other medical care related to the disease.
"One of the most important things we can do is detect the disease as early as possible," said Olivia Mastry, executive coordinator of Prepare Minnesota for Alzheimer's 2020.
Formed by the Legislature to help Minnesota prepare for an expected surge in dementia patients, the statewide collaborative is made up of more than 30 nonprofit, government and private organizations including the Alzheimer's Association and AARP.
Of the estimated 100,000 Minnesotans with Alzheimer's disease, half will never receive a diagnosis, Mastry said.
Mastry said her elderly mother-in-law clearly had some form of dementia for many years, but doctors never identified it or treated it as a disease as they did her other health conditions.
"I think it was more the sense that 'there's really nothing I can do for you, so why go down this path of a diagnosis if I can't help you,'" Mastry said.
Mastry and others in the Minnesota collaborative want doctors to put aside such notions.
To emphasize the point that early diagnosis is helpful, the collaborative has created an Alzheimer's brochure for physicians that includes checklists for identifying cognitive impairment.
Mastry said the reminders are largely based on the way doctors screen for other high-profile diseases.
"You don't wait for someone to have a heart attack before you identify if they're at risk for one and then begin to help them do all of the things that will help them avoid one or prevent some of the side effects of having heart issues," she said.
The collaborative also is trying to find ways to prevent caregivers from getting burned out.
Among those working on that effort is Carol Shapiro of Edina, Minn. Doctors diagnosed her husband with Alzheimer's six years ago.
Shapiro said it's exhausting to constantly adapt as your loved one loses the ability to do things.
"The losses just were incredible, and each loss you have to figure out, what do I have to do tomorrow? You can't just say, 'well this wasn't like this yesterday,'" she said. "This is where you're at now, and this is the new normal." It's important for families to figure out how to manage the transition, she said.
Shapiro's committee is working with the state to improve its online health care navigator, www.minnesotahelp.info, to make it more user-friendly for people searching for Alzheimer's resources. If caregivers receive the help they need at the very moment they need it, Shapiro said, they'll be less overwhelmed. That could make a big difference in the amount of time they're able to care for their loved at home.
But she adds that it's also important for caregivers to recognize when they can't do it alone anymore -- a decision she had to reach about a year and a half ago, when she moved her husband, Alan, to a Bloomington, Minn., group home for people with late-stage Alzheimer's.
At lunch time, Shapiro slides into an empty seat next to her 62-year-old husband and asks if he's eating chicken or tuna.
"He hasn't said my name in about four months, but then sometimes it will come back, and it's at the strangest times," she said. "Like if I drive over a curb and he gets angry, he'll say, 'Carol!'"
Shapiro said she agonized over the decision to move her husband out of their home. But when a bout of pneumonia put him in the hospital, she realized that he needed more care than she could provide.
A former competitive runner, Alan Shapiro has retained little of that athletic skill. His gait is awkward, and he struggles to maintain his balance. Before he came to group home he had become so weak that he had trouble climbing stairs. Even stepping into a car was a terrifying experience for him.
He now works with physical therapist Nicole Rennie, who twice a week straps 8-pound weights to his ankles and points him toward the front door.
"Come on Alan," she urged him on a recent day. "Run!"
The outdoor exercise regime has helped Alan Shapiro regain enough strength and confidence to climb into a vehicle again for family outings.
"I don't want him to end up in a wheelchair if he could walk the whole time," his wife said. "He's happier, and it makes me happier."
Advocates say making life better for people with Alzheimer's and their families is not only the right thing to do, but it's also an investment in the state's future.