Benefits

Early-Onset Alzheimer’s: Too Soon to Forget

By Rita Pyrillis

Apr. 25, 2016

Alzheimer's dementia
Ken Dodson lost his job shortly after he was diagnosed with early-onset Alzheimer’s disease seven years ago. To make matters worse, his wife, Nikki, had to quit her job to care for him, which meant the Dodsons, who have three children, lost two sources of income as well as health insurance. 

The first time Ken Dodson got lost, his wife Nikki chalked it up to stress. Ken Dodson, who was 28 at the time, was a supervisor at a Michigan steel company and often worked 12-hour days back in 2008, so getting a little turned around on his way home from the store didn’t seem like a big deal. But when it happened again on his way to pick up their daughter from school, Nikki Dodson’s gut told her that something was wrong — really wrong.

At work, Ken Dodson noticed that he tired easily and kept forgetting safety protocols that he knew by rote.

“I was having trouble doing things I did all the time,” Ken Dodson said in a recent Workforce interview, pausing a few beats after each carefully crafted sentence. “I usually never missed any time at work, but that last year, I didn’t have any energy. My mind raced to try to remember things, and it made everything worse.”

Over the next two years, the Dodsons consulted doctors who said depression was likely the problem and prescribed antidepressants, but nothing changed. Nikki Dodson feared a brain tumor. It wasn’t until the Dodsons insisted on a brain scan that a diagnosis was confirmed. One week before his 30th birthday, Ken Dodson was diagnosed with early-onset Alzheimer’s disease.

“I never in a million years thought Alzheimer’s, and I never thought that by the time I’m 40, I’ll be a widow with three kids at home,” Nikki said. (The average life expectancy for Alzheimer’s patients after diagnosis is eight to 10 years.) “People would say, ‘I hope you have money saved up,’ and I thought, ‘Are you kidding me? We were just starting our careers, we had just built a house, and we had just started our 401(k).’ ”

Alzheimer’s disease is an irreversible, degenerative disorder that destroys memory and can also affect problem-solving, behavior and speech. While it’s typically considered to be a disease of old age, approximately 200,000 of the estimated 5.3 million Americans with Alzheimer’s have been diagnosed under age 65. And that workplace number is expected to grow as baby boomers age, posing a challenge to employers who risk losing talented employees unless they are willing to help caregivers and those diagnosed with the disease to stay on the job as long as possible.

Alzheimer's dementia
The Dodsons and their dog, Bella. Photos by Brad Ziegler.

Early-onset Alzheimer’s, also known as younger-onset Alzheimer’s, can hit when someone is in their 30s or 40s, a time when families are least likely to have the financial and emotional resources to cope.

For the Dodsons, now both 37, it meant losing their major source of income and their health insurance. Ken Dodson lost his job during a series of layoffs shortly after his diagnosis, and Nikki Dodson, a teacher, had to quit her job to become her husband’s full-time caregiver. Luckily for the Dodsons, individuals with early-onset Alzheimer’s are automatically eligible to receive expedited Social Security benefits, though the amount was a fraction of their dual income.

“I know these are just material things, but we worked so hard to achieve them and now we have to work so hard just to make ends meet,” she said.

Working and Caregiving

Whether an employee has Alzheimer’s or is caring for someone with the disease, employers will feel the fallout, according to Dr. Lawrence Weinstein, chief medical officer at Humana Behavioral Health.

“Nearly 15 million people provide unpaid care to a person with Alzheimer’s or other dementias,” he said. “Many caregivers of people with Alzheimer’s reported making major changes to their work schedules because of caregiving responsibilities.” This includes going to work late or leaving early, taking a leave of absence, going from full time to part time or quitting, Weinstein said.

Employers will also see higher disability costs if more workers in their 50s and early 60s suffer from cognitive impairment associated with dementia as well as lost productivity as employees struggle to manage their treatment, their finances and family demands, he said.

While Alzheimer’s at any age is devastating, for younger adults with families to support, it can be even more overwhelming, according to social worker Susan Frick, co-founder of Without Warning, a support group at Rush University Medical Center in Chicago for people with early-onset Alzheimer’s disease. Getting a diagnosis can be difficult because no one expects a person in their 30s or 40s to have Alzheimer’s.

“It takes multiple doctors to see what’s going on,” she said. “Sometimes they’ll write it off as depression or, with women, as menopause. Sometimes it takes the caregiver a while, too. The person might seem more withdrawn or different, but that could be anything.”

Frick said often the first people to notice a problem are co-workers, which makes awareness important for employers.

Alzheimer's dementia
Ken and Nikki Dodson

“Often the workplace starts to notice the problem before the family does because it’s hard to hold it together at work,” Frick said. “Some people say they have to pull all-nighters to get the same level of work done. Anything new to the routine can become difficult. A lot of people say they try to keep it a secret but it becomes harder to do.”

Carrie Richardson, 35, had no choice but to tell her employer that she has early-onset Alzheimer’s. In 2010, Richardson, a single mother of three living in Montgomery, Alabama, joined a federally funded study of a rare form of Alzheimer’s disease that is caused by a gene mutation. Richardson must take time off every few months to undergo rigorous cognitive testing; for a time, a nurse would show up at Richardson’s workplace to take her vitals and administer medication. Richardson, who teaches preschool, said her supervisors are supportive and give her the time off that she needs.

While she shows no symptoms yet, Richardson, who still teaches preschool, is preparing for the inevitable. Her mother moved in with her in August to help take care of her children who are ages 15, 13 and 9, and she has insurance policies and a living will in place. She understands what lies ahead all too well. Her father, grandmother, three uncles and a cousin all died from early-onset Alzheimer’s. Richardson has two brothers — one tested positive for the genetic mutation, and the other did not.

For now, Richardson watches for signs that the disease has progressed.

“I’m busy with three kids so I think some of it is normal, but I don’t want to push it aside either,” she said. “I forget names of bands that I like. I forget small stuff. This morning I couldn’t find my keys, and I was asking all the kids where my keys are. I spent 30 minutes looking. I put cream in the pantry. And over the summer, we moved into a new house and one day I pulled into the driveway and my daughter said, ‘This is not our house.’ ”

Richardson is lucky to have a supportive employer, but that’s not the case for many workers, according to Ruth Drew, director of family and information services for the Alzheimer’s Association in Chicago. Often employees who are struggling with job performance because of early-onset Alzheimer’s are afraid to ask for help or they are unaware that something is wrong, and colleagues are afraid to speak up, she said.

“If they get fired before anyone figures out what’s going on, then they can’t take advantage of the benefits they qualify for,” she said. “I love it when the family gets a diagnosis early on because that gives them the most options to work with HR and take full advantage of the benefits available to them.”

Alzheimer's dementia
Ken Dodson, pictured in 2016.

The association offers resources to employers to raise awareness of Alzheimer’s in the workplace to help human resources better understand the disease and develop support for employees who care for a loved one with Alzheimer’s.

“About 15 million working Americans are caring for someone with dementia, and we don’t see it slowing down,” she said. “They may have kids in college or younger kids at home. They will be both caregivers and ones being cared for. We are seeing a tremendous impact on caregivers. Without a cure it’s really incumbent on all of us to have awareness of this disease and how it impacts caregivers.”

But employers need to be cautious not to jump to conclusions and assume that signs of forgetfulness or cognitive lapses means someone has the disease, according to Peter Petesch, a shareholder with the law firm Littler Mendelson in Washington, D.C.

“A lot of us should stick to our day jobs and manage performance, but when someone is aware that an employee has a diagnosis, there are certainly accommodations that can be made,” he said. “But it’s incumbent on the employee to come forward. Ask for an accommodation before it becomes a problem. The safest and most proactive approach an employer can take when an employee’s performance is deteriorating is to confront them with performance problems and determine if there is any way to get them back on track. It doesn’t involve diagnosing the employee, but it involves throwing it back to the employee to ask for accommodation.”

While the Americans with Disabilities Act doesn’t issue a list of medical conditions that are covered, it has a general definition of disability that a person must meet to be covered. If an employee with dementia meets the criteria, they will be covered, Petesch said.

“If the condition substantially limits life activity and impairs thinking, reasoning and a whole variety of cognitive activities,” he said, “then it almost always rises to the level of a disability under the ADA.”

Petesch advises employers to consider accommodations like putting instructions in writing or working with the employee to set up deadline reminders on their online calendars.

What employers can’t afford to do is ignore the problem, Drew added.

“The number of people impacted by Alzheimer’s is going to increase as the baby boomers age,” she said. “Any employer that does not look at the issue and is not aware that they have employees who are struggling to care for someone with Alzheimer’s is at risk for losing really talented staff. People are able to stay in the workforce longer when they have flexibility, and employers should help them find a way to do that.”

Rita Pyrillis is a freelance writer in the Chicago area. Comment below or email editors@workforce.com.

 

SIDEBAR

Employee Benefits and Early-Onset Alzheimer’s

Getting an Alzheimer’s diagnosis among those under age 65 can be difficult because the condition is relatively rare, affecting about 5 percent of Americans with the disease.

But it’s important that employees seek a diagnosis as soon as possible to maximize the benefits available to them, said Ruth Drew, director of family and information services, at the Alzheimer’s Association in Chicago. The organization outlines the options available to those who have received a diagnosis.

Private insurance

  • Disability insurance: Short term and long term.
  • Family and Medical Leave Act, or FMLA: Employees are allowed 12 weeks per year.
  • COBRA: Employees need to be aware that, to retain coverage past a certain point, they will need to provide the insurance company proof of disability to continue coverage until Medicare kicks in.

Social Security Disability

The U.S. Social Security Administration includes early-onset Alzheimer’s to the list of conditions under its Compassionate Allowance Initiative, expediting access to Social Security Disability Insurance and Supplemental Security Income eligibility. Social Security disability benefits will begin five months after an employee develops a disability. Payment should start during the sixth month of disability. Begin this application process when the employee goes on short-term disability and provide the written diagnosis to Social Security to aid in the approval process.

Medicare

Coverage will start approximately two years after the employee has been on disability.

Medigap

This program is available to employees when they start Medicare to bridge the gap in medical coverage. If the employee chooses one of the Medicare Advantage Plans, Medigap may not be available to work with their plan.

Medicare Managed (Medicare Advantage Plans)

Medicare has partnered with several insurance companies to provide Medicare coverage with the addition of prescription coverage.

—Rita Pyrillis

Rita Pyrillis is a writer based in the Chicago area.

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