Steve Bellows’ favorite thing is hiking near Pine with his brother’s two dogs, amiable companions who ask no questions and take no notice of his deficits from early-onset Alzheimer’s disease.
“I don’t have to answer to anyone,” the 62-year-old says of these forays.
He was in his late 40s when the earliest signs of the dementia-causing disease began to manifest and he began to fail in his field of vascular medicine.
He had been a medical researcher at the University of California-Davis, a cardiovascular specialist in a Los Angeles catheter lab and a trainer on medical equipment.
“I just started losing jobs around 2000 for reasons I didn’t understand,” Bellows said. “It was a decline in my skill set. I didn’t get along with my supervisor. Other people were recognizing my deficiencies. They were seeing things I couldn’t.”
Bellows lost his livelihood. His wife of eight years divorced him.
Getting an accurate diagnosis for early-onset Alzheimer’s was a long, trying process for decades. That’s beginning to change, experts say. With greater awareness of the looming Alzheimer’s epidemic in an aging population and advances in diagnostics, certainty is coming earlier to Alzheimer’s patients, including the estimated 200,000 patients under 65 among the more than 5 million Americans who are afflicted.
A diagnosis is not welcome news, but it affords families the opportunity to plan for financial impacts. In addition to the direct medical costs, Alzheimer’s threatens the livelihoods of patients and the family members who care for them.
Alzheimer’s disease costs U.S. business $61 billion a year, with $24.6 billion in health care and $36.5 billion in lost productivity, the association reports.
This year, Colorado has 63,000 Alzheimer’s patients. The Alzheimer’s Association projects a 46 percent increase, or 92,000 afflicted, by 2025 — almost a doubling since 2000.
Colorado, Alaska, Idaho, Nevada, Utah and Wyoming will see the sharpest rise based on current demographics.
The Colorado chapter of the Alzheimer’s Association has heard more in the past five years from early-onset patients as they struggle to raise children, preserve livelihoods and ultimately adapt to losing them.
First, the association added one early-onset support group then another. At any stage in life, an Alzheimer’s diagnosis is horrible, but the issues are very different for younger families, said Linda Mitchell, CEO of the local chapter.
“Many of them are still trying to raise a family. Some have kids in kindergarten. The spouse is trying to remain working because they’re down to one income,” she said.
It’s possible for early Alzheimer’s patients to remain in their workplace and contribute without being disruptive, said Mimi Castelo, a neuropsychologist at the Colorado Neurological Institute. The key is open and honest communication with the employer.
“There has to be a discussion about whether it’s worth trying to make it work, but it’s a progressive condition, so it’s a moving target,” Castelo said. “You have to have an exit strategy.”
Alzheimer’s can affect insight about oneself, Castelo said. The disease affects chemicals and eventually structures of the brain, damaging far more than memory. It causes personality changes and diminishes creativity, learning ability, impulse control and social empathy.
“It’s not just lines in your face,” Bellows said. “You’re losing part of your human self.”
The impact on individuals is catastrophic, causing anger and grief over lost careers, among all the other losses, Mitchell said. And it’s not just those with the disease, but those caring for them.
The cumulative effect of these disrupted lives will rock the workplace and economy because, by 2013, the state’s Alzheimer’s patients had 229,000 caregivers, the association reports. As a group, they worked 261 million unpaid hours. That unpaid care was worth $3.2 billion.
The sacrifices don’t end there. Among the caregivers of Alzheimer’s patients nationwide, 75 percent also were juggling employment responsibilities. In a 2011 survey, more than 65 percent reported having to go in late, leave early or take extra time off. About 13 percent had to switch to part time or take a less demanding job. Ten percent had to quit. For 8 percent, job performance declined to the point of possible dismissal.
Employment attorney Jude Biggs said she doesn’t remember getting many questions about concerns and accommodations for patients or caregivers 10 years ago.
“It’s more than common now,” Biggs said. “For the sandwich generation, caring for elderly parents, raising young kids and working, … it’s getting harder to keep all balls up in the air. I get more questions from employers about how to be compassionate and still get the job done.”
The Alzheimer’s Workplace Alliance includes about 2,000 companies and organizations that support employees and customers trying to balance work and caregiving. The alliance encourages policies such as flex time, telecommuting, training materials and employee-assistance programs.
Biggs said she’s seeing more small companies offering employee-assistance programs.
“These are very individual situations,” Biggs said. “There is a wide spectrum where employers can be very flexible with caregiving employees and get the mission accomplished. And most of them want to be flexible. But the bottom line is the work has to get done.”
Biggs also takes more calls about employers concerned with older employees’ performance. They suspect there might be something more than aging behind mistakes and changed behavior, but they’re afraid to broach the subject because of concerns over age discrimination.
“They are very uncomfortable in this gray zone,” Biggs said.
The Americans with Disabilities Act provides limited protection to people with Alzheimer’s disease, according to the American Academy of Neurology. Companies with 15 or more employees must make reasonable accommodations for employees and job applicants with physical or mental disabilities. That could include switching that person to a less-demanding or -stressful position or reducing hours.
While employees are suffering only mild cognitive impairment, the U.S. Labor Department’s Job Accommodation Network recommends employers “match tasks with remaining abilities.” It says: Provide routine and structure; find a co-worker to partner with the employee; give written assignments and reminder notes; and limit workplace clutter, distractions and interruptions.
Ten years ago, Mitchell said, many early-onset patients would not have been diagnosed at a young age, leaving them “wandering in the mental health system.”
For Bellows, the early stages of his disease were a time of uncertainty and anxiety.
“I couldn’t find work,” he said. “I was just trying to pay the bills. But when I’d go to neurologists about disability, they looked at me like I was trying to beat the system.”
In March 2010, the Social Security Administration added early-onset Alzheimer’s disease to its “Compassionate Allowance” list, speeding up the approval process. Benefits can start within days, rather than months or years.
Bellows came to Colorado to live in a cottage on his brother’s property. He pays rent. He does small jobs. He receives some disability insurance, but it’s half the amount for which he’d be eligible if he hadn’t taken it early.
He finds a silver lining in his situation. He believes a serious head injury at age 16 from a motorcycle accident that nearly killed him contributed to his developing Alzheimer’s.
“I was angry at first. But then I thought, I could have died in the motorcycle accident. I didn’t. I’ve done a lot. I’ve seen a lot,” he said. “My mother didn’t have to bury me. I’m grateful for that.”
Electa Draper: 303-954-1276, edraper@denverpost.com or twitter.com/electadraper
200,000
Estimated number of Americans under age 65 living with Alzheimer’s disease$214 billionTotal estimated direct-cost impact on American society caring for Alzheimer patients in 2014
5 million
Total number of Americans diagnosed with Alzheimer’s diseaseAlzheimer’s Association
