Alzheimer’s and memory care expert Christy Turner explains cognitive screening: why it’s important, how it works, and how the current media frenzy around Joe Biden, Donald Trump, and cognitive decline affects those living with cognitive impairment.
“Person-Man-Woman-Camera-TV.” By now, you’ve probably heard President Trump say that he “aced” a cognitive test. He went on to explain at length one component he encountered – recalling five objects – and added that, in his experience of cognitive screening, “they get very hard, the last five questions.”
This wasn’t the first time President Trump has brought up cognitive testing. He’s been hammering presumptive Democratic nominee Joe Biden for months, raising questions about his cognitive health. Democrats have argued that it is Trump who is experiencing cognitive decline.
And now, leading up to the 2020 election, it seems that suddenly everyone is talking about cognitive testing. With all the chatter, I thought it would be helpful to take a deeper dive on the topic.
In this article, I’ll look at the screening tools that are currently available and most widely used. I’ll also take a step back and cover why cognitive screening is important, and how the way we talk about it now is crucial to the future of every person living with a cognitive impairment.
What is cognitive screening and how does it work?
One important note is that these cognitive “tests” are more accurately called screening tools. Depending on a particular tool’s sensitivity, a low score can show that further testing is indicated. That typically means an appointment with a primary care provider for lab tests and referral to a neurologist.
Still, many (most?) frail elderly people are simply given a diagnosis of dementia by their primary care physician and go no further with any testing or diagnostics. Families often rightly believe further testing would arrive at essentially the same conclusion, and the benefit of knowing which specific kind of dementia is significantly outweighed by the difficulty of getting their person to a doctor.
True diagnostic testing is an in-depth process of exclusion, not a quick version of “Repeat Person-Man-Woman-Camera-TV for me” instructions. Lab test results will often reveal untreated conditions that can mimic dementia symptoms. Whether a diagnosis of a neurodegenerative disorder is ultimately made or not, treatment of underlying conditions usually shows at least some improvement in symptoms.
A CT scan and/or MRI can either rule out or provide further evidence of a condition causing a neurodegenerative disorder. PET scans and functional MRIs are more sensitive but more rarely used due to their expense. Most insurance does not cover either.
Neuropsychologists perform in-depth cognitive testing that can last anywhere from four to eight hours and are able to make a more accurate and definitive diagnosis, such as Alzheimer’s disease or Lewy Body Syndrome. Unfortunately, however, people with frontotemporal degeneration (FTD) average at least three years of trying before finally receiving an accurate diagnosis.
Short of or in advance of these more in-depth and more costly testing methods, people may undergo cognitive screenings. There are several known and widely used methods.
You’ve no doubt heard all about the Montreal Cognitive Assessment (MoCA) by now. It’s widely assumed that this is the screening President Trump is referring to, although he has not mentioned the name of the test he took. Widely used and likely to become even more popular due to the publicity surrounding it, the MoCA looks at much more than the ability to recall five words several minutes later. As with the SLUMS, the MoCA includes questions designed to screen for impaired executive function.
Rather than memory problems, struggles with executive function are often the earliest indicator of a brain health problem requiring timely medical intervention.
The Mini-Mental State Exam (MMSE) was the first tool I ever administered back in my days as a Social Services Director in a Veteran Affairs contract skilled nursing facility. (In contrast to “Person-Man-Woman-Camera-TV,” we commonly referred to the MMSE as the “Apple-Table-Penny” screen because users are asked to remember those three words.)
At the time, I was working in a Veteran Affairs contract skilled nursing facility and part of my job was to immediately administer the test when a new admission came into the building. In practice, this meant I’d be asking someone who was usually not much more than 48 hours post-op and heavily medicated for pain to tell me where they were, what the address was, and so forth.
My one stand-out experience with the MMSE came shortly after I became a Memory Care Director. At 92, Lily had been admitted from the hospital a few days before I started. The previous Memory Care Director had already managed to discontinue the unnecessary antipsychotic medication Lily had been given in the hospital.
My eighth question was, “What county are we in?” Without missing a beat, Lily replied, “Well, I’m not sure, because I think this building sits just about on the county line. So we could be in Washington County, or we could be in Multnomah County.”
Our building did in fact straddle the two. Lily’s answer was a crucial piece of evidence that helped me prove she’d been misplaced in memory care; she moved into assisted living shortly thereafter.
The MMSE fell out of vogue both for its shortcomings (well-educated native English speakers tend to do significantly better) and because it stopped being free. The company I worked for changed to the Mini-Cog, a much quicker screening tool that adjusts for native language and education level.
I like the quickness of it. In my experience, people get less annoyed the quicker the experience. And I’m a big fan just for the clock drawing component alone. Watching how someone decides to draw the clock and where the numbers go give a lot of information in a very short space of time. (People with stroke-related cognitive impairments lump the numbers all together on one side, for example.)
When I changed companies, I was introduced to the Brief Cognitive Rating Scale (BCRS), which remains my favorite tool. We used the BCRS with Global Deterioration Scale (GDS) in conjunction with Physical Self-Maintenance Scale (Activities of Daily Living, or ADLs) and the Functional Assessment Staging Test (FAST) as part of our pre-admission assessment to determine where a person was in the disease process and what type and amount of assistance would be necessary to support them along the way.
I’ve always found the BCRS easy to use in a conversational way. This is a huge advantage when interacting with a person who’s had it with “feeling like a dummy” in a neurologist’s office after taking the MMSE – a complaint I’ve heard more times than I can count over the years.
The Saint Louis University Mental Status Examination for Detecting Mild Cognitive Impairment and Dementia (SLUMS) is widely used in the Veterans Affairs medical system. (Because of that and the way President Trump described the difficulty of the last few questions during his interview with Fox News medical analyst Dr Marc Siegel, saying that “it was 30 or 35 questions. The first questions are very easy. The last last questions are much more difficult,” I figured this was the tool he was referring to.)
I’ve used the SLUMS on numerous occasions as part of a locally affiliated Alzheimer’s Foundation of America Memory Screening Day program. In my experience, people reported (and showed) the most difficulty with the last four questions because it tests concentration and comprehension, and people with cognitive impairment struggle with both.
What’s the point of cognitive screening?
With a condition that’s chronic, progressive, incurable and fatal, it’s a very hard sell to get people to race to the doctor at the first sign something is amiss. In my experience, people don’t like to hear bad news, especially when they feel like there’s nothing they can do about it.
But getting to the doctor right away and starting the diagnostic process is still the very best thing a person experiencing cognitive symptoms can do. The first step in that diagnostic process is often a cognitive screening.
Let’s use Phil Gutis (our Assistant Sherpa on The Alzheimer’s Podcast and a Senior Reporter for Being Patient) as an example: Because Phil took quick action when he learned about an ad for the Biogen trial that described his symptoms, he was able to enroll in the trial for its new still-experimental-and-back-in-phase-III-trials drug aducanumab. To get into the trial, Phil went through the entire diagnostic process — on Biogen’s dime.
At age 54, he was diagnosed with young-onset Alzheimer’s disease. Obviously, no one wants to get that diagnosis, Phil included. But he’s also noted that there was some relief in getting it, because he finally had a name for his symptoms.
Getting the diagnosis when he did has also allowed Phil to think about, and discuss with his husband and sister and nephew and nieces, what he wants the rest of his life to look like. And perhaps most important to every human, his early diagnosis has made autonomy possible: Phil gets to be in control of making tough decisions now, rather than forcing his husband into making agonizing choices in the future.
So, what’s the point of cognitive shaming?
There have been some questions as to whether President Trump understands the implication of continuing to talk about his cognitive screen.
For example, a Washington Post news story “Trump keeps boasting about passing a cognitive test — but it doesn’t mean what he thinks it does” reports, “During a private campaign meeting in the Cabinet Room in early June, Trump brought up the test unprompted. In an extended riff, he talked about how well he had done — boasting that he’d been able to remember five different words, in order — and suggested challenging Biden to take the assessment, saying he was certain the former vice president would not fare as well.”
Many have interpreted this as President Trump believing cognitive screening is akin to an IQ test.
Folks have speculated for years about President Trump’s mental and cognitive health as the majority of the public searches for a logical explanation of his thinking, judgment and decision-making. Those are legitimate concerns regarding anyone in a position of authority.
But right now, it’s all culminating in a tsunami of “Person-Man-Woman-Camera-TV” mockery on social media, and that mockery is targeted specifically at perceived cognitive impairment. The word “dementia” is being casually thrown around pejoratively.
None of this is helpful for people living with a neurodegenerative disorder, whether they’ve been diagnosed or not.
Seriously, we have to get rid of the stigma and shame surrounding dementia and the diseases and conditions that cause it. We know early detection and treatment lead to the best quality of life outcomes.
Publicly ridiculing a person many believe has the condition is no way to persuade others to be proactive in seeking diagnostic testing. Being publicly shamed and derided is already the stuff of nightmares for people with perfectly healthy brains.
Imagine suspecting — fearing — you have a cognitive impairment. Everyone needs to understand the amount of courage it takes — as in, feeling the raw terror and doing it anyway — to seek a diagnosis for a condition that is chronic, progressive, incurable and fatal.
Publicly ridiculing a person many believe has the
condition is no way to persuade others to be
proactive in seeking diagnostic testing.
It’s also worth noting that there is zero public access to President Trump’s medical records. We have not seen any diagnostic testing records. People who believe he has a neurodegenerative disorder are speculating, mostly in a way that denigrates people who do have a neurodegenerative disorder.
If President Trump does turn out to have some type of cognitive impairment, ridiculing him for it by merchandising “Person-Man-Woman-Camera-TV” is cruel, and the very antithesis of reducing stigma associated with Alzheimer’s and related dementias.
None of this is to say people who hold elected office shouldn’t be held accountable for their actions; of course they should. But that is a separate matter that will be decided November 3, 2020.
Christy Turner has worked with more than 1,500 people living with dementia and their families, including multiple people in her own family. She is a speaker and consultant, host of The Alzheimer’s Podcast, founder of DementiaSherpa.com, and creator of the online programs Memory Care at Home and The Dementia Sherpa’s Guide to Moving into Memory Care.