By most measures of health, Utah is a good example for the nation, not a horrible warning. The Beehive State has some of the nation's lowest rates of cancer, diabetes and heart disease. It has low rates of obesity, tobacco use and alcoholism.
But then there’s Alzheimer’s disease.
In the past five years, the number of deaths attributed to Alzheimer’s in Utah has more than doubled. Utah ranks 9th in the nation for Alzheimer’s deaths — compared with 50th for deaths from cancer and 35th from heart disease, according to the Centers for Disease Control and Prevention.
Moreover, Utah is one of six states in which cases of the degenerative brain disease are predicted to rise 40 percent or more over the next seven years.
Because the risk of Alzheimer’s disease and other forms of dementia increases as people age, the disease can seem like a curse of good health.
"It's kind of a double-edged sword," said Ronnie Daniel, executive director of the Utah chapter of the Alzheimer's Association. "The single-largest risk factor for Alzheimer's is age. People tend to have a more healthy lifestyle overall and that causes them to live longer here. But the longer we live, the more of a risk we have."
Grim statistics seem to bear this out: One in 10 Americans over the age of 65 have Alzheimer's. After age 85, 1 in 3 of us do. The average life expectancy in Utah is 80, one of the highest in the nation.
Centers for Disease Control and Prevention | Aaron Thorup, Centers for Disease Control and Prevention
If you live in a state where dementia-related deaths are rising, such as Arizona, Nevada and Utah, can you and your family opt out of the trend? With no vaccine or cure on the horizon, it may not be possible. Even people who are in peak physical health get Alzheimer's, former President Ronald Reagan one of the most famous among them.
Although the Alzheimer’s Association says the disease cannot be prevented, treated or cured, accumulating research suggests that lifestyle factors can lower an individual’s risk, even as Alzheimer's marches mercilessly among the population at large.
And some researchers believe preventive interventions can delay the onset of Alzheimer's or slow its progression in people already showing signs of the disease. Four factors — nutrition, exercise and social and cognitive engagement — deliver the most promising results. For some of the more than 30,000 people currently living with Alzheimer's in Utah, it's too late. But others may be helped with the right interventions and if they keep other health conditions under control, health experts say.
'There is absolutely nothing'
Dr. Terrell Thomson was a physician specializing in internal medicine for nearly three decades. The father of five also earned a doctorate in microbiology and, until recently, had the sort of brain that allowed him to retain anything he read. For fun, Thomson restored antique cars, including a 1937 Plymouth that his wife drove in American Fork High School’s 100th anniversary parade. He is an expert woodworker who made the mantel that hangs over the family’s fireplace in American Fork.
“Now opening a bottle of water is beyond his ability. He can’t drive. And he cannot play golf, which was his favorite thing,” said Debbie Thomson, now a full-time caregiver to her husband of 41 years.
Dr. Terrell Thomson has a medical degree, a Ph.D. and Alzheimer's disease. He was diagnosed in January, and his wife Debbie is his caregiver. They pose Friday, June 23, 2017, next to a vintage 1937 Plymouth car that Terrell restored.| Eric Schulzke, Deseret News
Her husband, “the most brilliant man I have ever known,” was diagnosed in January at age 67 after more than three years of visual and cognitive decline.
“It is one of the most insidious diseases I can think of,” Debbie Thomson said. “With cancer, you have hope; there is some treatment, even if it isn’t effective. With this, there is nothing they have (to treat it). There is absolutely nothing.”
Even though her husband worked in health care for nearly 30 decades, the couple initially found it difficult to find help before seeing Dr. Norman Foster, a neurologist and director of the Center for Alzheimer’s Care, Imaging and Research at the University of Utah. Many doctors don’t want to get involved when a patient exhibits symptoms of Alzheimer’s, Debbie Thomson said, in part because they believe there’s nothing they can do.
One study published in 2015 found that nearly half of doctors treating patients with Alzheimer’s didn’t tell the patient of the diagnosis.
The perceived lack of effective treatment has created a sort of learned helplessness among many medical providers that is keeping patients from care that could help, said Daniel of the Alzheimer's Association of Utah.
Dr. Terrell Thomson has a medical degree, a Ph.D. and Alzheimer's disease. He was diagnosed in January, and his wife Debbie is his caregiver. They talk Friday, June 23, 2017, next to a vintage 1937 Plymouth car that Terrell restored. | Scott G Winterton, Deseret News
“Doctors tend to have that attitude that if there’s nothing I can do to help my patient, why should I burden them with this problem? It’s a big issue, getting doctors to understand that even if they can’t cure the disease, there’s a lot that can be done to help improve their quality of life,” Daniel said.
Another needed change is for primary-care doctors to start assessing cognitive abilities of their patients after 65, Daniel said. Even if no cognitive problems are detected, doing so provides a baseline that can make it easier to spot changes later on, he said, noting that Intermountain Health Care is now recommending that primary-care providers do routing screening for cognitive impairment at annual visits.
Dr. Meg Skibitsky, an Intermountain physician who specializes in geriatrics, said the health care company suggests that its providers offer a three-minute test called the mini-cog. The mini-cog assesses a person’s ability to draw a clock with a specific time shown and to remember a series of words. It doesn't take much time, but the screening will help doctors who may not always be able to detect cognitive decline in a routine wellness visit, Skibitsky said.
“Unless dementia is really advanced and you’re really in tune to it, it can be missed by primary-care physicians. I have personally missed some of these diagnoses until I conducted screening tests," she said.
If your doctor doesn’t do one, you should ask for the test if you or a loved one is 65 and older, Daniel said.
“It takes five minutes or less. And it’s no different from checking your cholesterol or heart rate every year,” he said.
Awareness and support
Americans fear cognitive decline more than they fear high cholesterol or high blood pressure. In a Marist Institute poll in 2012, people said they were more afraid of developing Alzheimer’s disease than having a stroke or getting cancer, heart disease or diabetes. There is a stigma unique to the disease, and it seems particularly prevalent in Utah, said Foster, the neurologist who diagnosed Thomson.
Foster was part of the statewide committee charged with implementing a five-year “action plan” to address the challenges presented by the 40 percent increase in Alzheimer’s cases that are expected in Utah by 2025.
But rates are spiking all over the U.S. The CDC reported recently that it expects nearly 14 million Americans to have Alzheimer’s by 2050, more than double the 5.5 million people diagnosed now.
Health officials say the numbers are disturbing, not just for the individuals who will suffer the loss of their memories and sense of self, as well as their families, but American taxpayers. More than two-thirds of the costs associated with care of people with Alzheimer’s and other forms of dementia are borne by Medicare and Medicaid, the Alzheimer's Association says.
Utah’s state plan, which was supposed to exponentially increase Alzheimer’s awareness and research between 2012 and 2015, largely fizzled because it lacked funding, observers said. The plan had five overarching goals, including to make Utah “dementia aware” and provide support for caregivers, and 93 specific recommendations. But there was no state-provided funding until 2015, when the Legislature allotted $161,000 to hire an Alzheimer’s specialist in the state Department of Health and provide money for public information.
Daniel said his organization, which gets more than half of its funding through a series of Walks for Alzheimer’s each September, has made strides in support offered to families. The chapter trained more than 500 caregivers in 2016 and holds town-hall meetings, called “Dementia Dialogue,” across the state.
But medical professionals bemoan the lack of funding that they say hampers research nationwide. Even though cancer deaths have declined and Alzheimer’s deaths are spiking, more dollars are funneled into cancer study than dementia research. In 2016, the National Institutes of Health spent about $5.6 billion on cancer research; its budget for Alzheimer’s was $910 million.
While there are more types of cancer than there are dementia, the discrepancy frustrates many families who worry not only about a loved one who has Alzheimer’s, but future generations. Researchers have not been able to determine exactly what causes the disease, but first-degree relatives appear to have an increased risk, which worries the Thomsons and their five sons.
“There are so many people living with this. Even in our little neighborhood, I can count four people who recently or in the past have been diagnosed," Debbie Thomson said. "And you ask yourself, What’s going on? Is there something else we can do? Do we have too many pollutants? There are no answers. We need more research."
Things that can help
The Thomson family was devastated not only by the diagnosis, but by the speed with which Alzheimer's took hold. Members of The Church of Jesus Christ of Latter-day Saints, Terrell and Debbie Thomson were four months into an 18-month mission in England when they realized they would have to return home because of Terrell Thomson's deteriorating condition. In addition to Alzheimer's, Thomson also has Balint's syndrome, a neurological condition that affects vision.
Debbie Thomson said her husband had a strong social network and exceptional cognition until recently and was always challenging his brain, which is advice often given for Alzheimer's prevention. "He read every night before bed," she said.
Dr. Terrell Thomson has a medical degree, a Ph.D. and Alzheimer's disease. He was diagnosed in January, and his wife Debbie is his caregiver. They pose Friday, June 23, 2017, next to a vintage 1937 Plymouth car that Terrell restored. | Scott G Winterton, Deseret News
But he had a heart attack more than a decade ago, and because of his demanding work schedule did not exercise regularly or get sufficient sleep. It wasn't unusual for him to work 24-hour shifts, and he was always available to his patients day and night, his wife said.
"One of our sons said something that I thought was significant. He said, 'Dad's been awake more hours in his life than most people have at 90,' and that's probably a true statement," Thomson said.
Researchers have known since 2009 that mice that are sleep-deprived develop the sticky plaques that are associated with dementia. Doctors speculate that the brain doesn't have sufficient time to renew itself when people don't get enough sleep.
Numerous studies have shown an association between exercise and improved cognition, even among people who have been diagnosed with Alzheimer's. Benefits are seen not just with vigorous workouts, but with as little as a one-hour walk three times a week, The New York Times recently reported.
Researchers speculate that exercise helps by increasing the flow of blood to the brain. They also believe exercise helps the brain maintain neural connections and stimulates the growth of new ones, according to the National Institutes of Health.
In addition, some medical experts believe that diets high in fish and vegetables provide protection against dementia's onset and progress. And a recent study in the United Kingdom found a greater risk of dementia among people who drink alcoholic beverages in moderation.
Although the predictions for Alzheimer’s spread in the coming decades seem dire, Foster said people shouldn’t become discouraged and think there’s nothing they can do to mitigate their risk. He noted a report last year that came out of the renowned Framingham Heart Study, a multigenerational study of people in Framingham, Massachusetts, that showed the risk of Alzheimer's and other forms of dementia declined when people had regular treatment for high blood pressure and diabetes.
“For individuals who didn’t get those controlled, the rates (of dementia) were exactly the same as they were 30 years ago,” he said.
“The big news is that we can do something to decrease the rate or individuals’ risk of Alzheimer’s. There are many things we can do that will help, but it requires both health care providers, as well as patients and their families, to actively take these steps,” Foster said.