How One Family Copes with Younger-Onset Alzheimer’s
If You Think Alzheimer’s is a Disease Isolated to the Elderly, Think Again
It was early in the summer of 2014 and husband and wife Roger and Ann Bolen were celebrating. After 25 years working with the Virginia Housing Development Authority, Ann was retiring. Avid travelers, the Norfolk-based couple decided to mark the date with a month-long vacation to Costa Rica.
There, things began to slip off track.
“I noticed that Roger was having trouble with little things that had never been a problem before,” says Ann, 59. Mostly it had to do with organization—matters like creating an itinerary or plotting routes to tourist sites proved difficult. At first, she blamed stress: After all, Roger was a high-level risk assessment officer for Capital One.
But then came a red flag. Touring the countryside, Ann asked her husband to pick up tickets for the next leg of their journey. On the way to the bus station, Roger got lost. When he came back, he was exasperated.
“He said he couldn’t find the place,” she says. Setting out together, it proved easy to locate. Married for more than 30 years, Ann knew her husband too well to be dismissive. “Though we joked and laughed it off, it worried me. We were seasoned international travelers—and this wasn’t the kind of mistake he would make. My immediate reaction was to start observing.”
Back at home, Ann accepted a position with the Love Funding corporation. Roger returned to work. The Bolens’ busy schedule resumed.
But for Roger, like thorns along a path, problems were steadily cropping up. “He started having all these IT issues,” says Ann. First, his BlackBerry didn’t seem to be working. However, when the company replaced it with a new iPhone, the problems didn’t go away. Furthermore, “he was struggling to handle his normal workload. He was having to work very, very late to get things done.”
The turning point came in October, when Roger took a business trip to Texas. Shortly after his arrival, he got lost. Though he had a smartphone, he couldn’t remember where he needed to be, much less how to work the GPS.
“He called me and said, ‘I’m totally lost; I can’t find the site I’m supposed to be at and I don’t know what to do,’” recalls Ann. Getting the street names from him, she pulled up Google Maps. “Luckily, I was able talk him through the situation and get him to where he needed to be. But that was the moment I knew something was truly wrong.”
When Roger got home, the couple visited their family doctor. Despite Ann’s worried observations, the doctor insisted the slipups were the byproducts of stress. At 58 years old, Roger exercised regularly, ate well and was otherwise a specimen of good health. He was too young to worry about neurological conditions; the symptoms would disappear soon enough.
But that’s not what happened. By December, it had all gotten worse.
“He was struggling at work to the point where I was worried he was going to get fired,” says Ann. She phoned their doctor and, after some highly emotional pleading, was able to convince him to schedule an appointment with a neurologist. However, the specialist also attributed Roger’s lapses to stress. “That’s when I wrote an impassioned letter to them both demanding due diligence. After that, they consented to arranging the proper tests.”
Unfortunately, the Bolens’ story doesn’t have a happy ending. Cognitive tests and MRIs revealed Roger was suffering from a particularly virulent form of dementia: Younger-Onset Alzheimer’s Disease.
Though most people think of Alzheimer’s as a disease reserved for the elderly, that simply isn’t the case. Of the estimated 5.7 million Americans living with the condition, at least 200,000 are under the age of 65. Many are much younger.
“While symptoms can begin to appear in their 30s, most people are diagnosed with Younger-Onset Alzheimer’s when they’re in their 40s or 50s,” confirms Gino Colombara. The executive director of the Southeastern Virginia Chapter of the Alzheimer’s Association, Colombara says the Association helps individuals and families prepare for and cope with the effects of the disease. Because these individuals are so young, the diagnosis affects them in ways that are very different from an elderly person. “They tend to have families, careers or are even caregivers themselves. They simply aren’t prepared for this kind of diagnosis.”
What’s worse, as with Roger Bolen, healthcare providers typically seek other medical culprits before considering Alzheimer’s as a possibility. “In general, it isn’t something they look for in younger people,” explains Colombara. This can lead to misdiagnosis and improper treatment—and thereby exacerbate the problem. “There is no single test for Alzheimer’s, and symptoms can vary drastically from person to person … Getting an accurate diagnosis can be a long and frustrating process.”
Upping the stakes is the fact that Younger-Onset Alzheimer’s is a far more aggressive form of the disease. With symptoms often worsening rapidly, families are catapulted into the deep end right away. As the disease is incurable, current treatment amounts to the management of symptoms. However, early and accurate diagnosis offers personal benefits to affected individuals and caregivers: Time to incorporate lifestyle changes, participation in clinical trials, planning for the future and maximizing time spent engaging in meaningful activities with loved ones and friends.
“Suddenly there are all these questions that have to be answered,” says Colombara. “Like, can you keep working? If so, for how long? What kind of insurance benefits do you have? What will you tell the kids? At what point will you need to apply for disability? Will your spouse have to quit work to provide care? What will your future healthcare costs be?” The list goes on. Shocked and grief-stricken, the choices are made all the more difficult. “Most of these families are losing primary breadwinners and having to make end-of-life decisions decades before they expected to do so. That’s overwhelming for anyone. And it’s all happening very, very fast.”
A Bolen family fishing trip out of Rudee Inlet. They eventually had to sell their boat,
as Alzheimer's took over Roger's abilities.
Ann Bolen likens the experience to waking up inside a nightmare: Not only have you just been kicked out of a plane, you find yourself freefalling without a parachute.
“My husband was my best friend—we’d done everything together and we’d planned a retirement of travel,” she says, her voice wracked with emotion. To realize there would soon come a day when the two could no longer share even a conversation was harrowing. “My life had been changed irrevocably: I was a deer in headlights.”
Still, there was much to be done. Roger’s medical leave would last but for so long. Legal arrangements had to be made. Finances needed to be put in order. The requirements were so demanding, Ann had to arrange for an indeterminate break from work.
For the next eight months, her every waking breath was devoted to coming to terms and grappling with the ramifications of her husband’s condition. Consulting with the Alzheimer’s Association, she began building a support team consisting of peers, medical personnel, a financial planner and an elderly law attorney.
“I knew right away my husband couldn’t do his job, because it was just too technical,” Ann says. The first order of business was to file for the Family Medical Relief Act—a law requiring employers to provide job-protected and unpaid leave for workers diagnosed with serious medical ailments. From there, they applied for short-term medical disability with their insurance company and began the daunting task of seeking Social Security Disability Insurance (SSDI) through the federal government. “The process was confusing and extremely frustrating. I actually had to hire an advocate to help me get everything organized and pushed through. She had to get on the phone with them and really fight for it.”
Meanwhile, changes were taking place at home as well.
“Roger made the decision to tell our friends and family himself,” says Ann. The fact that the Bolens’ children had already graduated from college made things easier. Nonetheless, Colombara is quick to note that social stigma often follows a diagnosis. “I remember thinking how brave that was of him,” Ann adds. “When you tell people, there’s a risk of them dropping you. We were blessed that our group didn’t do that. People were—and remain—very supportive.”
In September of 2015, Roger’s SSDI was approved. With the legal hurdles crossed and a solid financial plan in place, Ann says a burden was lifted off her shoulders.
“That’s when I was able to sleep through the night again,” she says. “Up to then, it was very hard to relax; I stayed worried all the time.” But with all that taken care of, “I could breathe and focus on taking things day by day.”
Roger with two sons, Chris and Dan.
It’s been more than three years since Roger’s diagnosis and, like so many families affected by Younger-Onset Alzheimer’s, the Bolens’ life has completely changed.
Though Ann has returned to work, she does so from home. A professional caregiver comes five days a week for about six hours a day and takes Roger on activities and fieldtrips. An in-home personal trainer helps him stay fit. The Bolens have become regulars at Alzheimer’s Association support groups and events. Beloved pastimes like travel are no longer viable.
“We owned a boat, and our favorite activity together was to go fishing,” says Ann. However, Roger’s disease prevented him from passing the examination to renew his captain’s license—much less drive the truck that formerly hauled the vessel. “When that happened, I went ahead and sold them both. For a while, we’d charter deep-sea trips, but last year he had trouble understanding how to reel in his line.”
With no cure or treatment to slow the progression of Alzheimer’s, Ann focuses on keeping her husband as comfortable as possible. Rather than rely on pills, she tries to mitigate anxiety and insomnia with immersive activities and ample exercise.
“[Roger] was always going and doing, so we’ve tried to maintain that routine as much as possible,” she says. For instance, “he gets in the pool and swims for an hour every day, has lunches on the town and goes to places like the zoo or the aquarium. ... I just try to keep him active and occupied. That tires him out and helps him stay more relaxed.”
While living with Alzheimer’s can be brutal, both Ann Bolen and Colombara find solace in helping raise public awareness of the disease. Namely, the toll it takes on society.
“Despite Alzheimer’s status as the nation’s sixth leading killer, the disease is the only cause of death among the American top-10 that cannot be prevented, cured or even slowed,” laments Colombara. What’s more, “while U.S. deaths from Alzheimer’s increased by 89 percent between 2000 and 2014, those attributed to heart disease, stroke and breast and prostate cancer all decreased.”
Their logic invokes the adage: There is power in numbers, and information is power.
“The more you learn about this disease and its effects, the more empathetic you become, and the more likely you are to want to help,” explains Ann. Working together, advocates can push for legislative support and increased funding for new and ongoing studies. Colombara, who just returned from the Alzheimer’s Association International Conference on research, says there is great optimism on the research front. “It’s no longer a question of if we’ll be able to find effective treatments and, ultimately, a cure,” he asserts, “but how soon.”