For those facing dementia, diagnostic tool nothing to brag about

Jay Reinstein remembers the day he took the cognitive test President Donald Trump keeps bragging about.

“One of the questions was to draw a clock at a certain time, and I'm staring at the circle and can't figure out where the small hand goes,” said Reinstein, 59, who was eventually diagnosed with Alzheimer's disease. “I have a bachelor's and master's. ... And I can't draw a damn clock. I felt so frustrated, ashamed.”

Trump has treated the cognitive assessment as a political tool, boasting repeatedly about his score on a test designed to detect early signs of dementia. He has used it as a cudgel, attacking the mental acuity of former Vice President Joe Biden, the presumptive Democratic nominee for president, goading him to take the assessment and saying Biden would not fare as well as him.

But for many Americans, the test Trump keeps trumpeting is one of the most fraught, traumatic turning points in their lives — that moment when they realize their mind is beginning to fail and glimpse the troubled path ahead for them and their families.

“I don't understand why he keeps bringing it up as a taunt or threat,” said Melissa Susser, a clinical social worker, who regularly administers the test to senior citizens in the D.C. area. “It's not like a political thing.”

Her co-worker Julia Pruitt said she worries it could further stigmatize a test — called the Montreal Cognitive Assessment, widely known as the MoCA test — which some older people are already nervous or ashamed to take. “We want to present it as a positive tool. The whole reason this test exists is to try to help people,” Pruitt said.

For Reinstein, the results of his cognitive test two years ago led to more tests, visits to neurologists, an MRI, sudden retirement from his job and a devastating diagnosis at age 57 with early onset Alzheimer's disease — a condition that causes people to lose memory and reasoning skills and for which there is no cure.

When he got the diagnosis, Reinstein remembers simply feeling numb. His wife broke down in tears.

The symptoms had crept up on them. Reinstein, a former assistant city manager for Fayetteville, N.C., would be meeting with city residents and suddenly couldn't name one of the six departments he oversaw. He would forget not just the details of a city project he was leading, but that he was in charge of it.

“I thought my game was just slipping. I started working longer hours. I made lists for everything,” he said.

He went to see a friend who was a neurologist at Duke University. The doctor administered the MoCA test — a 10-minute exam designed to detect mild cognitive impairment such as the onset of dementia.

The test is widely used because of its brevity and effectiveness as a screening tool for mild dementia. It is made up of roughly 30 questions designed to evaluate basic cognitive skills such as short-term memory, visual cues, language and orientation. The test often includes being able to recall a list of words and to repeat phrases such as, “The cat always hid under the couch when dogs were in the room,” according to one sample test.

Frequently, patients are asked to look at three drawings of animals and identify them — a lion, a camel and a rhinoceros, for instance.

The MoCA test is often administered at memory clinics or by primary-care physicians or geriatricians. In Trump's case, it was administered at Walter Reed National Military Medical Center in early 2018 by Navy Rear Adm. Ronny L. Jackson, then the White House's top physician.

At a news conference that year, Jackson said he would not have recommended that Trump undergo the cognitive assessment but that the president requested it. At the time, Trump was reeling from the fallout of Michael Wolff's book, “Fire and Fury” — an account of life inside the White House that depicted a maelstrom of chaos and incompetence — and Trump was eager to demonstrate that he was, as he claimed on Twitter, “a very stable genius.”

Medical experts stress the cognitive exam is not what Trump seems to think it is — an indicator of IQ or a political weapon. The test is normally administered only if someone is concerned that they or their loved ones may be losing basic cognitive abilities.

“It's not meant to measure IQ or intellectual skill in anyway,” said Ziad Nasreddine, the neurologist who created the test. “If someone performs well, what it means is they can be ruled out for cognitive impairment that comes with diseases like Alzheimer's, stroke or multiple sclerosis. That's it.”

This is what it feels like to take the assessment when you have dementia, say patients who have been through the experience: It's aggravating. It's sad. It's embarrassing.

Pruitt — the social worker at Iona Senior Services, a nonprofit group that provides services to older people in D.C. — said the first question she often asks after the test is: “How did that go for you?” It is a gentle way to gauge how aware people are of their decline and what kind of support they are going to need.

Susser said she often tries to have family members present when reviewing the results.

“There can be a lot of fear that comes with that realization. Fear about the medical system. Fear about having an incurable condition. Fear about what it could mean for you and your family, about losing your independence,” she said.

If handled correctly, however, the test can open the door to crucial conversations about what lies ahead and the support needed to navigate difficult decisions.

If the early signs of dementia are confirmed by further deterioration and tests, families often need to figure out long-term care options — a home-health aide, adult day programs or full-time nursing home — all of which can be expensive.

Helen Hardy, 77, scored better than she expected on a recent MoCA test, but low enough that she has started worrying about the future. A retired paralegal, she spent her life taking care of her five children and husband — most of whom have died.

The test question that gave her the most trouble was the one that involves being told five words and having to recite them several minutes later. Many times of late, she said, she goes to the kitchen to get something and just stands awhile, unable to recall what she was seeking.

“It's scary to think it could be Alzheimer's or dementia,” she said. “I worry because I know I don't have anybody in the family who can take care of me.”

For some, early signs of cognitive decline can lead at first to despair.

More than 5 million Americans live with Alzheimer's. It is the sixth-leading cause of death in the United States. And by 2050, the number of people in the United States with Alzheimer's is expected to reach more than 14 million.

“You work your whole life and you have a certain image of yourself, and suddenly, you see that you're not that person anymore,” Reinstein said.

Reinstein had to leave the assistant city manager job his whole life revolved around. Two years later, he said his wife still struggles at times to come to grips with his diagnosis.

He endured depression at first but has since thrown himself into advocacy work. He joined a support group and became a national board member for the Alzheimer's Association. He helps push for research and often shares his experience with others confronting the disease.

He said this is what the MoCA test has taught him: Don't sweat the small stuff.

There's plenty in his new life that frustrates him. Reinstein can no longer read novels, for example, because he can't remember the characters from chapter to chapter. So he focuses on reading shorter articles and essays.

“I can spend all day angry that I can't read a book or draw a simple clock, or I can hang out with my daughter, go to dinner with friends,” he said. “I focus on the things I can do. One test doesn't define me and doesn't change my life.”