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Dementia May Not Always Be the Threat It Is Now. Here’s Why.

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Dementia May Not Always Be the Threat It Is Now. Here’s Why.

Joan Presky worries about dementia. Her mother lived with Alzheimer’s disease for 14 years, the last seven in a memory-care residence, and her maternal grandfather developed dementia, too.

“I’m 100 percent convinced that this is in my future,” said Ms. Presky, 70, a retired attorney in Thornton, Colo.

Last year, she spent almost a full day with a neuropsychologist, undergoing an extensive evaluation. The results indicated that her short-term memory was fine — which she found “shocking and comforting” — and that she tested average or above in every cognitive category but one.

She’s not reassured. “I saw what Alzheimer’s was like,” she said of her mother’s long decline. “The memory of what she went through is profound for me.”

The prospect of dementia, which encompasses Alzheimer’s disease and a number of other cognitive disorders, so frightens Americans that a recent study projecting steep increases in cases over the next three decades drew enormous public attention.

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The researchers’ findings, published in January in Nature Medicine, even showed up as a joke on the Weekend Update segment of “Saturday Night Live.”

“Dementia is a devastating condition, and it’s very much related to the oldest ages,” said Dr. Josef Coresh, director of the Optimal Aging Institute at NYU Langone Health and the senior author of the study. “The globe is getting older.”

Now the findings are being challenged by other dementia researchers who say that while increases are coming, they will be far smaller than Dr. Coresh and his co-authors predicted.

Using data from about 15,000 Americans over age 55, collected at four research clinics around the country from 1987 through 2020, Dr. Coresh’s team projected a lifetime dementia risk much higher than previous studies had: 42 percent, though most of that risk didn’t emerge until after age 85.

The higher lifetime number probably reflected the study’s reliance on a more diverse sample than earlier researchers had used, Dr. Coresh said, and more dementia cases identified through in-depth questionnaires, regular phone calls, medical records and death certificates.

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The researchers applied their risk calculations to the U.S. population and estimated that the number of people who would develop dementia each year would roughly double, to about a million by 2060, from 514,000 in 2020.

Eric Stallard, an actuary and co-director of the Biodemography of Aging Research Unit at Duke University, read the study and thought the team “seemed very competent at their analysis” of individual risk.

But when it came to the projection that cases would double, which assumed that the incidence of dementia would remain stable over the next 40 years, “I don’t believe it,” Mr. Stallard said.

“The notion that the number of people with dementia will double over the next 25, 30 or 35 years due to the aging of baby boomers is widespread, it’s pervasive — and it’s wrong,” he added.

He and two other Duke researchers recently published a commentary in JAMA pointing out that the age-specific prevalence of dementia in this country had steadily declined for 40 years.

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“If your risks are lower than your parents’ risks and this trend continues, you won’t see the doubling or tripling of dementia that’s been projected,” said Dr. Murali Doraiswamy, director of the Neurocognitive Disorders Program at Duke and a co-author of the JAMA article.

To be clear, experts agree that the number of people with dementia will climb in coming decades, simply because the disorder rises so steeply with age and the number of older adults in the United States will increase.

But Mr. Stallard estimates that the increase will be more like 10 to 25 percent by 2050. “It will still be a significant challenge for the health system in the U.S.,” he said.

The Duke group relied on its own long-term study of people over age 65, with more than 21,000 respondents in 1984 and about 16,000 in 2004, plus later data from the national Health and Retirement Study and the National Health and Aging Trends Study.

Their analysis found that among 85- to 89-year-olds, for instance, the proportion with dementia was about 23 percent in the cohort born in 1905. In those born 10 years later, the figure had dropped to about 18 percent.

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By the time Americans born in 1935 reached their late 80s, about 11 percent had dementia; the projection for those born from 1945 to 1949 is now about 8 percent.

To Dr. Coresh, whose primary interest was in individual risk, the assumption that past declines would continue at about the current rate “would be great, but is quite an optimistic, dramatic decrease,” he said in an email.

Yet in another longitudinal study of older adults in England and China, published in Nature Aging last year, “we also found these quite marked improvements in more recently born cohorts,” said the lead author, Dr. John Beard, a medical epidemiologist at the Mailman School of Public Health at Columbia University.

“You would expect the increase in the absolute numbers of people with dementia in the U.S. will be less than we feared,” Dr. Beard said.

What has led to the decrease in dementia, also seen in several European countries? Often cited explanations include rising education levels, reduced smoking and improved treatment for high blood pressure and high cholesterol.

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The Lancet Commission on dementia, intervention and care has developed a list of 14 modifiable risk factors, including greater use of hearing aids and reduced air pollution, that could still lead to greater declines.

Yet the reverse could also happen. If earlier and more widespread testing increases the number of dementia diagnoses, or if the definition of dementia broadens, rates will increase, Dr. Doraiswamy noted. Increasing life expectancy would have the same effect.

Obesity and diabetes, more common in recent decades, could lead to more dementia, but much-touted new drugs that reduce them could blunt that trend — if people can get them.

“None of this is inevitable,” said Dr. Gill Livingston, a psychiatrist at University College London who leads the Lancet Commission. “It depends on what we do.”

Public health policy makes a major difference, she noted, and, “The U.S. is in a time where policy is changing enormously.”

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Dementia rates might rise, for example, “if people have less access to health care, so they are less likely to get their blood pressure treated and their high cholesterol treated,” Dr. Livingston said.

Slashed Medicaid coverage could lead to that result. So could a rollback of environmental policies, “if air pollution increases because of fossil fuels,” she added.

Already, dementia afflicts some American populations far more than others, researchers point out. Older women and Black people face greater risk, along with those who carry the APOE4 gene associated with Alzheimer’s disease.

Health disparities could mean that “affluent people will see lower rates of dementia” because of the new diabetes and obesity drugs, Dr. Doraiswamy said. “People who can’t afford them and whose conditions are not well-managed will see rates go up.”

The debate about how many older adults will develop dementia in coming decades, and about how individuals, families, government and the health care system should respond, will likely continue.

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So will Ms. Presky’s fears.

For now, she enrolls in lifelong learning classes, takes walks and yoga classes despite orthopedic problems, listens to podcasts and reads a lot of history and fiction. She and her husband take in theater in New York and Phish concerts on the West Coast and will soon be heading to London and Paris.

Still, her advance directive contains many provisions about dementia. “I remain pessimistic,” she said, noting that her mother was diagnosed at 77. “I have seven more years before I meet her fate.”

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Video: SpaceX Rocket Launches Carrying 3 Weather-Monitoring Spacecraft

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Video: SpaceX Rocket Launches Carrying 3 Weather-Monitoring Spacecraft

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SpaceX Rocket Launches Carrying 3 Weather-Monitoring Spacecraft

Two of the spacecraft are for NASA and one is for the National Oceanic and Atmospheric Administration.

“Three, two, one — engines full power and liftoff. Go, Falcon. Go IMAP. Go SWFO-L1 and go Carruthers.” “And we are flying three new missions on a million-mile journey to track space weather.”

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RFK Jr. wants an answer to rising autism rates. Scientists say he’s ignoring some obvious ones

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RFK Jr. wants an answer to rising autism rates. Scientists say he’s ignoring some obvious ones

This week, the Trump administration announced that it was taking “bold action” to address the “epidemic” of autism spectrum disorder — starting with a new safety label on Tylenol and other acetaminophen products that suggests a link to autism. The scientific evidence for doing so is weak, researchers said.

Health and Human Services Secretary Robert F. Kennedy Jr. said federal officials “will be uncompromising and relentless in our search for answers” and that they soon would be “closely examining” the role of vaccines, whose alleged link to autism has been widely discredited.

Kennedy has long argued that rising diagnoses among U.S. children must mean more exposure to some outside influence: a drug, a chemical, a toxin, a vaccine.

“One of the things that I think that we need to move away from today is this ideology that … the autism prevalence increase, the relentless increases, are simply artifacts of better diagnoses, better recognition or changing diagnostic criteria,” Kennedy said in April.

Kennedy is correct that autism spectrum disorder rates have risen steadily in the U.S. since the U.S. Centers for Disease Control began tracking them, from 1 in 150 8-year-olds in 2000, to 1 in 31 in 2022, the most recent year for which numbers are available.

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But physicians, researchers and psychologists say it is impossible to interpret this increase without acknowledging two essential facts: The diagnostic definition of autism has greatly expanded to include a much broader range of human behaviors, and we look for it more often than we used to.

“People haven’t changed that much,” said Alan Gerber, a pediatric neuropsychologist at Children’s National Hospital in Washington, D.C., “but how we talk about them, how we describe them, how we categorize them has actually changed a lot over the years.”

Defining ‘autism’

The term “autism” first appeared in the scientific literature around World War II, when two psychiatrists in different countries independently chose that word to describe two different groups of children.

In 1938, Austrian pediatrician Hans Asperger used it to describe child patients at his Vienna clinic who were verbal, often fluently so, with unusual social behaviors and at-times obsessive focus on very specific subjects.

Five years later, U.S. psychiatrist Leo Kanner published a paper about a group of children at his clinic at the Johns Hopkins Hospital in Baltimore who were socially withdrawn, rigid in their thinking and extremely sensitive to stimuli like bright lights or loud noises. Most also had limited verbal language ability.

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Both Asperger and Kanner chose the same word to describe these overlapping behaviors: autism. (They borrowed the term from an earlier psychiatrist’s description of extreme social withdrawal in schizophrenic patients.)

This doesn’t mean children never acted this way before. It was just the first time doctors started using that word to describe a particular set of child behaviors.

For the next few decades, many children who exhibited what we understand today to be autistic traits were labeled as having conditions that have ceased to exist as formal diagnoses, like “mental retardation,” “childhood psychosis” or “schizophrenia, childhood type.”

Autism debuted as its own diagnosis in the 1980 third edition of the Diagnostic and Statistical Manual of Mental Disorders, the American Psychiatric Assn.’s diagnostic bible. It described an autistic child as one who, by the age of 2½, showed impaired communication, unusual responses to their environment and a lack of interest in other people.

As the decades went on, the DSM definition of autism broadened.

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The fourth edition, published in 1994, named additional behaviors: impaired relationships, struggles with nonverbal communication and speech patterns different from those of non-autistic, or neurotypical, peers.

It also included a typo that would turn out to be a crucial driver of diagnoses, wrote cultural anthropologist Roy Richard Grinker in his book “Unstrange Minds: Remapping the World of Autism.”

The DSM’s printed definition of autism included any child who displayed impairments in social interaction, communication “or” behavior. It was supposed to say social interaction, communication “and” behavior.

The error went uncorrected for six years, and the impact appeared profound. In 1995 an estimated 1 in every 500 children was diagnosed with autism. By 2000, when the CDC formally began tracking diagnoses (and the text was corrected), it was 1 in every 150.

Reaching underserved communities

In 2007, the American Academy of Pediatrics recommended for the first time that all children be screened for autism between the ages of 18 and 24 months as part of their regular checkups. Prior to that, autism was diagnosed somewhat haphazardly. Not all pediatricians were familiar with the earliest indicators or used the same criteria to determine whether a child should be further evaluated.

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Then in 2013, the fifth edition of the DSM took what had previously been four separate conditions — autistic disorder, Asperger’s disorder, childhood disintegrative disorder and pervasive developmental disorder — and collapsed them all into a single diagnosis: autism spectrum disorder.

The diagnostic criteria for ASD included a broad range of social, communication and sensory interpretation differences that, crucially, could be identified at any time in a child’s life. The term was no longer limited only to children whose development lagged noticeably behind that of their peers.

Since that definition was adopted, U.S. schools have become more proactive about referring a greater range of children for neurodevelopmental evaluations. The new DSM language also helped educators and clinicians better understand what was keeping some kids in disadvantaged communities from thriving.

“In the past, [autism was] referred to as a ‘white child’s disability,’ because you found so few Black and brown children being identified,” said Shanter Alexander, an assistant professor of school psychology at Howard University. Children of color who struggled with things like behavioral disruptions, attention deficits or language delays, she said, were often diagnosed with intellectual disabilities or behavioral disorders.

In a sign that things have shifted, the most recent CDC survey for the first time found a higher prevalence of autism in kids of color than in white children: 3.66%, 3.82% and 3.30% for Black, Asian and Latino children, respectively, compared with 2.77% of white children.

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“A lot of people think, ‘Oh, no, what does this mean? This is terrible.’ But it’s actually really positive. It means that we have been better at diagnosing Latino children [and] other groups too,” said Kristina Lopez, an associate professor at Arizona State University who studies autism in underserved communities.

The severity issue

An autism diagnosis today can apply to people who are able to graduate from college, hold professional positions and speak eloquently about their autism, as well as people who require 24-hour care and are not able to speak at all.

It includes people who were diagnosed when they were toddlers developing at a noticeably different pace from their peers, and people who embraced a diagnosis of autism in adulthood as the best description of how they relate to the world. Diagnoses for U.S. adults ages 26 to 34 alone increased by 450% between 2011 and 2022, according to one large study published last year in the Journal of the American Medical Assn.

Kennedy was not correct when he said in April that “most cases now are severe.”

A 2016 review of CDC data found that approximately 26.7% of 8-year-olds with autism had what some advocates refer to as “profound autism,” the end of the spectrum that often includes seriously disabling behaviors such as seizures, self-injurious behavior and intellectual disability.

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The rate of children with profound autism has remained virtually unchanged since the CDC started tracking it, said Maureen Durkin, a professor of population health science and pediatrics at the University of Wisconsin-Madison. Indeed, the highest rate of new diagnoses has been among children with mild limitations, she said.

For many researchers and advocates, the Trump administration’s focus on autism has provoked mixed emotions. Many have lobbied for years for more attention for this condition and the people whose lives it affects.

Now it has arrived, thanks to an administration that has played up false information while cutting support for science.

“They have attempted to panic the public with the notion of an autism epidemic as a threat to the nation, when no such epidemic actually exists — rather, more people are being diagnosed with autism today because we have broader diagnostic criteria and do a better job detecting it,” said Colin Killick, executive director of the Autistic Self Advocacy Network. “It is high time that this administration stops spreading misinformation about autism, and starts enacting policies that would actually benefit our community.”

This article was reported with the support of the USC Annenberg Center for Health Journalism’s National Fellowship’s Kristy Hammam Fund for Health Journalism.

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Forest Service reverses decades-long ban, allows wildfire firefighters to use N95 masks

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Forest Service reverses decades-long ban, allows wildfire firefighters to use N95 masks

The U.S. Forest Service has announced it is reversing a ban on federal firefighters wearing masks, and will give crews protective N95s as they battle increasingly intense fires across the nation.

For decades, the agency argued their use made firefighters vulnerable to heat exhaustion.

Other wildfire-prone nations, such as Canada, Greece and Australia, provide their firefighters with masks to prevent lung damage and smoke-related diseases, including cancer and organ failure — and have not seen increases in heat stroke among the crews.

The policy will have little bearing on local and regional urban firefighters, such as those in Los Angeles and Los Angeles County.

“We are actually encouraged to wear them,” said Jonathan Torres, engineer and spokesman for the Los Angeles County Fire Department.

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“There are chemicals that are unknown to us that are part of our work,” as buildings and infrastructure burn, he said. Masks provide some protection against harmful smoke particles and chemicals released when plastics, upholstery and synthetic building materials burn.

Earlier this week, the forest agency announced it has stockpiled roughly 80,000 N95 masks and will include them as part of the equipment they provide for large fires.

The decision came following a series of New York Times reports that detailed the Forest Service’s decades-long refusal to require, or even offer, masks to its crews, despite recommendations from state and federal health agencies, and a growing body of evidence that wildfire smoke is harming firefighter health.

“To provide masks, and even require masks, is an implicit admission of the health hazards of smoke,” said Timothy Ingalsbee, executive director of Firefighters United for Safety, Ethics and Ecology, an organization that promotes the health and safety of wildland firefighters.

Ingalsbee and others say the Forest Service’s reluctance to encourage mask wearing was probably motivated by concern it would be admitting that smoke poses dangers and risks to its crews.

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Research shows that firefighters have a 9% higher risk of getting a cancer diagnosis than the general public, and 14% higher risk of dying from cancer. Crews may be exposed to smoke and other toxins believed to cause cancer, such as benzene, phenols and heavy metals, while fighting fires.

Federal lawmakers are now working on safety legislation to protect federal and contract wildland firefighters, and have sent a series of letters to the Forest Service criticizing what they call its decades-long neglect.

Reports suggest that “that federal agencies are neglecting their duty to protect the health of wildland firefighters,” wrote Reps. Jared Huffman (D-San Rafael), Maxine Dexter (D-Ore.) and Joe Neguse (D-Colo.) in a letter to Forest Service chief Tom Schultz. “Neglecting the health of current firefighters will make future recruitment harder and leave our communities vulnerable.”

On Tuesday, they grilled Schultz at a House oversight meeting.

Huffman urged Schultz to warn workers about the dangers of smoke exposure: “Chief, do you feel like the Forest Service is doing everything that it can to make the safety risk of smoke inhalation known to firefighters?”

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Gov. Gavin Newsom and the California Department of Forestry and Fire Protection also announced Tuesday that the state will be funding research designed to examine how smoke and other occupational exposures may increase cancer risk in firefighters.

The research, which includes a collaboration among scientists and experts at UCLA, UC Davis and Cal Fire, is backed by nearly $9.7 million in state funding and will include 3,500 firefighters from departments across the state over a two-year period.

The study comes at a time when the Trump administration has made drastic cuts to cancer research.

“It’s California at our best: our world-class public universities teaming up with the women and men who put their lives on the line to protect others — all in an effort to improve health outcomes for all,” Newsom said in a statement.

The study will include a focus on the exposures and biological changes that occurred in firefighters who responded to the Eaton and Palisades fires in Los Angeles.

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Ingalsbee said that masks are not always appropriate when fighting fires — there are activities, such as traipsing up and down steep terrain when a N95 mask can get gummed up with debris and sweat and make it difficult for a firefighter to breathe.

However, he said the vast majority of the time, when firefighters are at their base camps, where it’s often smoky, or driving along dusty, sandy roads, masks could go a long way to protect their lungs, reducing exposure.

“There are times when masks are unsuitable and firefighters overheat and they are uncomfortable,” he said. “But there’s a lot of times when they’d be very useful in limiting their exposure. And maybe could save some lives.”

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