ST. LOUIS — Doug Whitney inherited the same gene mutation that gave Alzheimer’s disease to his mother, brother and generations of other relatives by the unusually young age of 50.
Yet he’s a healthy 73, his mind still sharp. Somehow, the Washington man escaped his genetic fate.
So did a woman in Colombia who dodged her own family’s similar Alzheimer’s destiny for nearly three decades.
To scientists, these rare “escapees” didn’t just get lucky. They offer an unprecedented opportunity to learn how the body may naturally resist Alzheimer’s.
“It’s unique individuals oftentimes that really provide us with breakthroughs,” said Dr. Eric McDade of Washington University in St. Louis, where Whitney’s DNA is being scoured for answers.
The hope: If researchers could uncover and mimic whatever protects these escapees, they might develop better treatments — even preventive therapies — not only for families plagued by inherited Alzheimer’s but for everyone.
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“We are just learning about this approach to the disease,” said neuropsychologist Yakeel Quiroz of Massachusetts General Hospital, who helped study the Colombian woman. “One person can actually change the world — as in her case, how much we have learned from her.”
Quiroz’s team has a pretty good idea what protected Aliria Piedrahita de Villegas — an additional genetic oddity that apparently countered the damage from her family Alzheimer’s mutation. But testing showed Whitney doesn’t have that protective factor, so something else must be shielding his brain.
Now scientists are on the lookout for even more Alzheimer’s escapees — people who may have simply assumed they didn’t inherit their family’s mutation because they’re healthy long after the age their loved ones always get sick.
“They just think it’s kind of luck of the draw and it may in fact be that they’re resilient,” said McDade, a researcher with a Washington University network that tracks about 600 members of multiple affected families — including Whitney, the escapee.
“I guess that made me pretty special. And they started poking and prodding and doing extra testing on me,” the Port Orchard, Washington, man said. “I told them, you know, I’m here for whatever you need.”
Answers can’t come quickly enough for Whitney’s son Brian, who also inherited the devastating family gene. He’s reached the fateful age of 50 without symptoms but knows that’s no guarantee.
“I liken my genetics to being a murder mystery,” said Brian Whitney, who volunteers for Washington University studies that include testing an experimental preventive drug. “Our literal bodies of evidence are what they need to crack the case.”
‘How’s Dad?’
More than 6 million Americans, and an estimated 55 million people worldwide, have Alzheimer’s. Simply getting older is the main risk — it’s usually a disease of people over age 65.
Less than 1% of Alzheimer’s is caused by inheriting a single copy of a particular mutated gene. Children of an affected parent have a 50-50 chance of inheriting the family Alzheimer’s gene. If they do, they’re almost guaranteed to get sick at about the same age as their parent did.
That near certainty allows scientists to study these families and learn critical information about how Alzheimer’s forms. It’s now clear that silent changes occur in the brain at least two decades before the first symptoms — a potential window to intervene. Among the culprits, sticky amyloid starts building up, followed by neuron-killing tau tangles.
What happens instead in the brains of the resilient?
“That’s why I’m here,” said Doug Whitney, who for years has given samples of blood and spinal fluid and undergone brain scans and cognitive exams, in the hunt for clues. “It’s so important that people in my situation come forward.”
Whitney’s grandparents had 14 children and 10 of them developed early-onset Alzheimer’s. The first red flag for his mother: Thanksgiving 1971, when she forgot the pumpkin pie recipe she’d always made from memory.
“Five years later, she was gone,”’ Whitney said.
Back then, doctors didn’t know much about Alzheimer’s. It wasn’t until the 1990s that separate research teams proved three different genes, when mutated, can each cause this uniquely inherited form of the disease. They each speed abnormal amyloid buildup.
Doug Whitney’s family could only watch and worry as his 50th birthday came and went. His older brother had started showing symptoms at 48. (Some other siblings later were tested and didn’t inherit the gene although two still don’t know.)
“We went through about 10 years when the kids would call home their first question was, ‘How’s Dad?’” his wife Ione Whitney recalled. “By the time he turned 60 we kind of went, wow, we beat the coin toss.”
But not the way he’d hoped. In 2010, urged by a cousin, Whitney joined the St. Louis research. He also agreed to a genetic test he’d expected to provide final reassurance that his children wouldn’t face the same worry — only to learn he’d inherited the family mutation after all.
“He kind of got leveled by that result,” Brian Whitney said.
While Brian inherited the family gene, his sister Karen didn’t — but she, too, is part of the same study, in the healthy comparison group.
Hunting for answers
U.S. researchers aren’t the only ones on the trail of answers. In South America, scientists are tracking a huge extended family in Colombia that shares a similar Alzheimer’s-causing variant. Carriers of this mutated gene start showing memory problems in their early 40s.
In contrast, one family member — Piedrahita de Villegas — was deemed to have “extreme resistance,” with no cognitive symptoms until her 70s. Researchers flew the woman to Quiroz’s lab in Boston for brain scans. And when she died at 77 of melanoma with only mild signs of dementia, her brain was donated to Colombia’s University of Antioquia for closer examination.
Her brain was jampacked with Alzheimer’s trademark amyloid plaques. But researchers found very little tau — and weirdly, it wasn’t in the brain’s memory hub but in a very different region.
Clearly something affected how tau formed and where. “The thing that we don’t know for sure is why,” Quiroz said.
DNA offered a suspect: An ultra-rare mutation on an unrelated gene.
That APOE gene comes in different varieties, including a version notorious for raising people’s risk of traditional old-age Alzheimer’s and another that’s linked to lower risk. Normally, the APOE3 version that Piedrahita de Villegas carried makes no difference for dementia.
But remarkably, both copies of her APOE3 gene were altered by the rare “Christchurch” mutation — and researchers think that blocked toxic tau.
To start proving it, Quiroz’s team used preserved cells from Piedrahita de Villegas and another Colombian patient to grow some cerebral tissue in lab dishes. Cells given the Christchurch mutation developed less tau.
“We still have more work to do, but we’re getting closer to understanding the mechanism,” Quiroz said.
That research already has implications for a field that’s long considered fighting amyloid the key step to treating Alzheimer’s.
Instead, maybe “we just need to block what’s downstream of it,” said Dr. Richard Hodes, director of the National Institute on Aging.
And since Whitney, the Washington man, doesn’t have that extra mutation, “there may be multiple pathways for escape,” Hodes added.
In St. Louis, researchers are checking out another clue: Maybe something special about Whitney’s immune system is protecting his brain.
The findings also are fueling a search for more escapees to compare. The Washington University team recently began studying one who’s unrelated to Whitney. In Colombia, Quiroz said researchers are looking into a few more possible escapees.
Living with uncertainty
That search for answers isn’t just work for scientists. Whitney’s son Brian estimates he spends about 25 days each year undergoing different health checks and procedures, many of them far from his Manson, Washington, home, as part of Alzheimer’s research.
That includes every two weeks, getting hooked up to a pump that administers an experimental amyloid-fighting drug. He also gets regular brain scans to check for side effects.
Living with the uncertainty is tough, and he sometimes has nightmares about Alzheimer’s. He tries to follow what he now knows was his parents’ mantra: “Make the best of life till 50 and anything after that is a bonus.”
He makes lots of time to go fishing and camping with daughter Emily, now 12, who hasn’t yet been told about the family gene. He hopes there will be some answers by the time she’s an adult and can consider testing.
“When I have a bad day and decide maybe I should not continue (the research), I think of her and then that all vanishes,” he said.
The 10 states with the highest rates of Alzheimer’s disease
Intro
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As the baby boomer generation rapidly approaches retirement age, the U.S. is projected to experience a radical demographic shift. According to the U.S. Census Bureau, about one in five residents in the U.S. will reach retirement age (over 65) by the 2030s. For the first time in U.S. history, seniors will soon outnumber children under 18.
This aging of the population will have far-reaching economic and social ramifications, especially when it comes to healthcare needs. Specifically, diseases that typically affect the elderly will become more prevalent in the U.S. One of the most common illnesses among people over the age of 65 is Alzheimer’s disease.
Alzheimer’s disease is the most common cause of dementia. It is a neurocognitive disorder that affects a person’s memory. Alzheimer’s typically starts with mild memory loss and sometimes progresses to hindering a person’s speech, thought process, and ability to respond to his/her surroundings. The exact cause of the disease is unknown and it currently has no cure.
According to the Centers for Disease Control and Prevention, more than 5 million Americans suffer from Alzheimer’s disease. The onset of the disease usually occurs after the age of 60, and the risk of Alzheimer’s increases significantly with age. Currently, 11 percent of American adults over the age of 65 have Alzheimer’s.
Unlike other medical conditions associated with aging, such as heart attacks or strokes, the development of Alzheimer’s disease is often a much slower process. Nevertheless, this disease can still result in death. In 2017, more than 120,000 deaths were a result of Alzheimer’s disease. Of these cases, 80,000 were among Americans over the age of 85.
Interestingly, about two-thirds of Americans with Alzheimer’s are women. While there is no definitive explanation for the gender discrepancy, some medical experts postulate that reasons might include women’s higher life expectancy. Additionally, the fact that more men are likely to die from other causes, such as heart disease, is also considered. In 2017, 84,079 women and 37,325 men died as a result of Alzheimer’s.
Alzheimer’s disease is the sixth leading cause of death in the United States, with death rates on the rise. Between 2000 and 2017, deaths due to Alzheimer’s rose by 145 percent. This change is in stark contrast to other illnesses that are also leading causes of death. Heart disease and influenza experienced a net decrease in deaths over the same period of time. Forms of dementia tend to be under-reported on death certificates because it is difficult to distinguish whether a person died because of dementia or if they only had dementia at the time of their death. According to the Alzheimer’s Association, the number of older adults dying from Alzheimer’s may be much higher than what is reported.
Even when adjusting for age, the death rate due to Alzheimer’s disease continues to rise. The age-adjusted death rate due to Alzheimer’s has almost doubled since 1999. In 2018, the age-adjusted death rate per 100,000 people was 31. Over a span of 15-years, the Alzheimer’s death rate increased 20 percent for the 65 to 74 age group, 52 percent for the 75 to 84 age group, and 76 percent for the 85 and older age group.
As Alzheimer’s continues to claim lives, its financial burden on society also remains impactful. Not only does the disease affect individual patients, but also their family members and taxpayers who fund government programs like Medicare and Medicaid. According to the Centers for Medicare and Medicaid Services (CMS), the average annual total medicare payments per beneficiary with Alzheimer’s was $26,017 in 2017. Further, the Alzheimer’s Association estimates that in 2018, the total cost of treating Alzheimer’s disease—including assisted living facilities, home health care, and other medical treatment—was around $277 billion. The association estimates these costs will more than double by 2035 and continue rising as the 65+ population reaches more than 85 million by 2050.
Although there is no cure for Alzheimer’s, advances in modern medicine may aid the severity of the condition. The use of biomarkers allows doctors to detect the disease earlier and intervene by treating the symptoms. Research from Precision Health Economics on behalf of the Alzheimer’s Association has estimated that early detection could save America nearly $8 trillion when treating people who will develop the disease.
Given current population trends, Alzheimer’s will become an even larger national issue over the next few years—disproportionately impacting states with large senior populations. For example, the total number of people with Alzheimer’s disease in Alaska is expected to increase by 46.7 percent by 2025, compared to only 1.1 percent in the District of Columbia. Overall, Southern and Western states are projected to experience the greatest percentage increase in the number of people with Alzheimer’s.
To find which states have the highest rates of Alzheimer’s disease currently, researchers at A Place For Mom analyzed prevalence and cost statistics from the Centers for Medicare and Medicaid Services. For this analysis, states were ranked by their prevalence of Alzheimer’s disease. In the event of a tie, the state with the higher age-adjusted death rate was ranked higher. The highest rates of Alzheimer’s are located in the Northeastern or Southern states.
10. New York
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- Alzheimer’s prevalence among 65+ population: 12%
- Alzheimer’s age-adjusted death rate per 100k: 13.2
- Alzheimer’s annual deaths: 3,521
- Projected 10-year 65+ population growth: 22%
- Annual cost per Medicare beneficiary with Alzheimer’s: $30,138
9. New Jersey
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- Alzheimer’s prevalence among 65+ population: 12%
- Alzheimer’s age-adjusted death rate per 100k: 23.6
- Alzheimer’s annual deaths: 2,829
- Projected 10-year 65+ population growth: 28%
- Annual cost per Medicare beneficiary with Alzheimer’s: $29,677
8. Michigan
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- Alzheimer’s prevalence among 65+ population: 12%
- Alzheimer’s age-adjusted death rate per 100k: 34.5
- Alzheimer’s annual deaths: 4,428
- Projected 10-year 65+ population growth: 26%
- Annual cost per Medicare beneficiary with Alzheimer’s: $27,209
7. Arkansas
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- Alzheimer’s prevalence among 65+ population: 12%
- Alzheimer’s age-adjusted death rate per 100k: 39.4
- Alzheimer’s annual deaths: 1,436
- Projected 10-year 65+ population growth: 27%
- Annual cost per Medicare beneficiary with Alzheimer’s: $21,414
6. Louisiana
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- Alzheimer’s prevalence among 65+ population: 12%
- Alzheimer’s age-adjusted death rate per 100k: 43.7
- Alzheimer’s annual deaths: 2,188
- Projected 10-year 65+ population growth: 29%
- Annual cost per Medicare beneficiary with Alzheimer’s: $27,847
5. Alabama
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- Alzheimer’s prevalence among 65+ population: 12%
- Alzheimer’s age-adjusted death rate per 100k: 45.2
- Alzheimer’s annual deaths: 2,563
- Projected 10-year 65+ population growth: 28%
- Annual cost per Medicare beneficiary with Alzheimer’s: $21,641
4. Connecticut
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- Alzheimer’s prevalence among 65+ population: 13%
- Alzheimer’s age-adjusted death rate per 100k: 20.4
- Alzheimer’s annual deaths: 1,077
- Projected 10-year 65+ population growth: 26%
- Annual cost per Medicare beneficiary with Alzheimer’s: $27,351
3. Florida
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- Alzheimer’s prevalence among 65+ population: 13%
- Alzheimer’s age-adjusted death rate per 100k: 20.7
- Alzheimer’s annual deaths: 6,980
- Projected 10-year 65+ population growth: 55%
- Annual cost per Medicare beneficiary with Alzheimer’s: $27,511
2. Texas
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- Alzheimer’s prevalence among 65+ population: 13%
- Alzheimer’s age-adjusted death rate per 100k: 38.5
- Alzheimer’s annual deaths: 9,545
- Projected 10-year 65+ population growth: 43%
- Annual cost per Medicare beneficiary with Alzheimer’s: $29,184
1. District of Columbia
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- Alzheimer’s prevalence among 65+ population: 14%
- Alzheimer’s age-adjusted death rate per 100k: 17.6
- Alzheimer’s annual deaths: 125
- Projected 10-year 65+ population growth: -4%
- Annual cost per Medicare beneficiary with Alzheimer’s: $30,823
Methodology and full results
For each state, prevalence and cost statistics for 2017 (the most recent year available) are from the Centers for Medicare and Medicaid Services (CMS). The data is for individuals aged 65 and over with Alzheimer’s disease, senile dementia, or related disorders.
Prevalence rates are calculated using diagnosis codes in Medicare beneficiaries’ claims. The total costs (Medicare spending) are annual averages of all costs across all types of claims for beneficiaries with Alzheimer’s disease or a related disorder.
Age-adjusted mortality rates, annual deaths, and projected population growth rates are from the Centers for Disease Control and Prevention’s CDC WONDER online database. Statistics are from 2017, which is the most recent year available. Population growth rates were calculated between 2017-2027.
States were ordered by their respective prevalence of Alzheimer’s disease. In the event that two or more states had the same prevalence, states with higher age-adjusted death rates were ordered above.
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