A West Side native says she’s fighting younger-onset Alzheimer’s by checking off her bucket list, maintaining a healthy lifestyle, and laughing when she puts her blouse on backwards.
“You’ve got to maintain as positive an outlook as possible,” says Theresa Montgomery, whose MRI and neurological and psychological testing confirmed her diagnosis in 2015, at age 58.
Younger onset –– it’s no longer called early-stage Alzheimer’s –– occurs with people diagnosed prior to age 65, says Alzheimer’s Association spokeswoman Kaylin Risvold.
About 200,000 of the 5.7 million Americans living with Alzheimer’s have younger-onset diagnoses, Risvold said.
Montgomery said she first started noticing in 2014 that she had gotten less skillful at multi-tasking; had to ask herself whether she had brushed her teeth, and once forgot to turn off the stove before she left her house.
“That scared me,” Montgomery said. “I realized, ‘You’re just not as on top of your game.’ It’s very disappointing.”
Montgomery and other African-Americans have the highest prevalence of Alzheimer’s disease and related dementias (13.8 percent) among people ages 65 and older, according to a new Centers for Disease Control and Prevention (CDC) report.
That means African-Americans are about two times more likely than white Americans to have Alzheimer’s and other dementias, and Latinos are one-and-one-half times more likely. Because of population growth, Hispanic Americans will see the largest projected increase in cases.
The study of 28 million Medicare recipients – the first to account for older Americans’ race and ethnicity – showed the next highest prevalence for Alzheimer’s and related dementias is among Latinos (12.2 percent), non-Hispanic whites (10.3 percent), Native Americans and Alaska natives (9.1 percent) and Asian and Pacific Islanders (8.4 percent).
Even more alarming, the study found African-Americans and Latinos are less likely than whites to be diagnosed with Alzheimer’s or another dementia.
That’s important because researchers are now able to identify people at risk and are developing what they hope will be therapies and treatments to stop Alzheimer’s from worsening as people age. Experts say people should start preventive measures in their 40s. These include exercising vigorously (with their doctors’ permission), staying socially connected and eating a Mediterranean diet.
An accurate diagnosis is critical, too.
Northwestern University is among 60 sites nationwide conducting clinical trials of people whose brains have started accumulating a beta-amyloid protein at abnormally high levels. These people are more likely to develop signs of dementia over the next five to 10 years than those who don’t show the amyloid buildup.
Doctors can test for the toxic protein in research studies by injecting a tracer into a person’s vein. The tracer binds to amyloid in the brain. An imaging test, called a PET scan, reveals the amount and location of the protein buildup. The test isn’t widely available outside of research studies.
Northwestern’s trial is “a game changer,” said Sandra Weintraub, a neuropsychologist, professor of psychiatry and behavioral sciences and neurology, and associate director of a center at Northwestern funded by the National Institute on Aging to study Alzheimer’s dementia and cognitive aging.
“If we can prevent amyloid accumulation [in a person’s brain], we can at least push dementia to the future for five to 10 years – or even stop it,” she said. “If the trial doesn’t work, it’s also a game changer because we’ll have to go back to the drawing board.”
Drug developers are testing their own ways to halt Alzheimer’s progression. Danish pharmaceutical company Lundbeck, with U.S. headquarters in north suburban Deerfield, is testing an immune therapy aimed at directing the body’s own natural antibodies to attack the amyloid deposits in a person’s brain.
“By developing treatments that can slow the rate by which the toxic proteins are deposited, or at which they accumulate, we can slow the rate at which the brain cells are dying, and slow down the disease progression — perhaps to where people can have a normal progression of life,” said Dr. Doug Williamson, a psychiatrist and Lundbeck’s chief medical officer.
It will take about two years to get results of that trial. If successful, another round of testing would be required before the therapy could gain FDA approval and be available to people with Alzheimer’s.
Lundbeck also is working to develop treatments to alleviate Alzheimer’s patients’ agitation and psychotic symptoms, Williamson said.
The goal is to let people with Alzheimer’s live at home, since they may be able to stave off the agitation and aggression they sometimes direct at relatives they no longer recognize, said Williamson, who experienced the situation first-hand when his mother-in-law’s condition deteriorated as her Alzheimer’s progressed.
The stakes are high.
The number of Americans projected to have Alzheimer’s disease or dementia is expected to double, to 13.9 million, to nearly 3.3 percent of the population, by 2060, mostly because the Baby Boomer population is aging, the CDC report says. The number of Illinoisans with the disease stands at 220,000. “This disease is wiping out our older population,” Weintraub said.
Just a few days ago, retired Supreme Court Justice Sandra Day O’Connor revealed she had been diagnosed with the “beginning stages of dementia, probably Alzheimer’s disease.”
O’Connor’s husband also had Alzheimer’s.
If no treatments are found to slow or stop Alzheimer’s progression, the disease’s prevalence will put caregivers and the healthcare system under tremendous strain, says the CDC researcher who wrote the report detailing Alzheimer’s risk based on race and ethnicity.
People can live 20 years after their symptoms appear, said Kevin Matthews, a Ph.D. geographer in the CDC’s National Center for Chronic Disease Prevention and Health Promotion. Matthews’ father died at age 65 after suffering from dementia for 10 years. His father had been on a care center waiting list for over a year when he died.
What to do?
Experts believe it may be possible to prevent Alzheimer’s with the proper diet, exercise, positive outlook and by staying socially active.
Taking care of your teeth may also make a difference.
That finding emerged from research at the University of Illinois at Chicago, showing that a common oral bacteria may play a role in the development of Alzheimer’s.
Studies of mice showed long-term exposure to gum-disease bacteria caused inflammation and brain-neuron degeneration similar to Alzheimer’s effects in people, said Dr. Keiko Watanabe, professor of periodontics at the UIC College of Dentistry and corresponding author on the study.
“Our data not only demonstrate the movement of bacteria from the mouth to the brain, but also that chronic infection leads to neural effects similar to Alzheimer’s,” Watanabe said.
While the researchers keep working, Montgomery says she deals with her younger-onset Alzheimer’s by taking one day at a time.
“There are going to be some days when you cry,” she said. “Then you get happy again. The clock is ticking.”