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Slow Moving Diagnosis: Part 3 – Consult with neuropsychology

Neuropsychologist Dr. Sophia Tai worked out of a spacious room, more like a lounge than a clinical setting. Furnished with a sage green couch and comfortable armchairs, the room was banked by two walls of windows. Bright light bathed the room in a positive, “maybe there will be good news” glow. A petite, round woman, dressed in beige, Dr. Tai introduced herself to us with a reserved, but friendly smile. She would complete a series of cognitive evaluations that would take about three hours. 

Robert’s MRI showed us where in his brain neurodegeneration was occurring. Brain imaging can tell us what parts of a brain may be impacted by disease and help us to arrive at a diagnosis. But it takes additional analysis to develop a more accurate diagnosis and staging of the disease. I say “more accurate” purposefully. The only way to get to a definitive diagnosis is to sample brain matter. “Sampling” can only be done during an autopsy. To be sure, diagnostic tests for specific types of neurocognitive diseases are improving all the time, but to a certain extent, we are flying blind when it comes to dementia. 

Dr. Franks, Robert’s neurologist, had referred him to neuropsychology to complete a snapshot of where he was in the disease process. Dr. Tai would couple the results of her testing with Robert’s brain imaging. We would review her report at our next appointment.

This chronicle is a bit longer than some of my previous stories. I want to provide enough context about the assessments so that other families going through this aren’t starting from zero.

Seven stages of dementia

There are seven generally accepted stages of dementia. Naming conventions for each stage will vary slightly depending on the source, but the underlying behaviors are consistently grouped in each stage. Staging the disease is useful to understand what types of support the patient and their family will need.

The tests

Neuropsychologists use different tests to assess cognitive function including the Mini-Mental State Exam (MMSE), the Montreal Cognitive Assessment (MoCA), and the St. Louis University Mental Status exam (SLUMS). While these assessments constitute the best staging tools available, they each come with their limitations.

The MMSE is heavily biased to those with higher education and literacy and it doesn’t really test visual-spatial decline. Visual-spatial decline can be a pronounced early indicator of dementia for some people. The test is also not good at identifying mild cognitive impairment.

The MoCA is a bit more sensitive and can help identify mild cognitive impairment. While the SLUMS test is also useful for identifying mild cognitive impairment, it’s not especially useful for assessing the later stages of dementia. (SLUMS wasn’t used on Robert, so I have little experience with this tool.)

Types of questions

Dr. Tai led Robert to a quiet exam room where he would be free of noise and distractions (me) to complete the tests. The MMSE and MoCA each include 30 questions, but the scoring for each is not interchangeable.

Both tests begin by evaluating the patient’s orientation in time and space. What season, month, year is it? What state, county, city are we in? What building are we in?

They go on to assess the patient’s ability to “register” information (repeat “fox, ball, sock”) and to retain that information for reporting back later (short-term recall).

The patient is asked to complete a series of calculations (count backward from 100 by seven). He is asked to name objects or images. For example, a wristwatch is not a “timepiece” or a “clock” or a “thing to tell time with,” but specifically a watch.

Finally, the tests assess whether the patient is able to complete a discrete set of tasks and how many steps they remember in the set. 

Getting to know Robert

Dr. Tai also talked with Robert, got to know him, and learned how he processed information, how he saw the world, and his illness. She was extraordinarily kind and patient.

Three hours of testing is hard for any of us, but it is especially grueling for those with some mental impairment. I liken this to trying to concentrate while listening to a high-pitched squealing. It is really hard to separate the task from the noise. The patient with dementia is working to find information and brain functions that are “hidden” by the noise.

Robert fell asleep in the car on his way home from the clinic. The testing had worn him out.

The results

Two weeks after his afternoon of testing, Robert and I returned to Dr. Tai’s office. She walked us through her findings. 

“Robert shows greater verbal impairment than is typical for someone with his education level.” (He has a Master’s Degree.) “His numerical proficiency is still good, measuring only a modest decline. But as you have experienced, Robert has lost some of his executive function used in problem-solving.”

“Taken their totality, these results indicate mild deterioration. However, Robert’s brain imaging suggests frontotemporal lobar degeneration is ongoing.” 

In summary, Robert was diagnosed with “mild cognitive decline.” Many of us will experience mild cognitive impairment without ever being diagnosed with dementia. We can think of mild cognitive decline as the last cognitive function “stop” before dementia. Some people get off the train at this station and never arrive at a dementia diagnosis. 

Really?

I felt that the diagnosis didn’t capture the challenges we were facing, and it took some time for the implications to sink in. Was I really so judgmental that I was seeing limitations that weren’t there? I didn’t think so. Robert had lost his ability to do so many things. His impairment didn’t seem mild to me. (Was this what aging looks like? The specter that this might be normal aging I found, honestly, kind of terrifying.)

Robert was extremely vulnerable. He could no longer remember how to carry out the tasks of his day. His debit card PIN eluded him. He could no longer cook. He needed prompts to finish dressing. Who wouldn’t harbor judgments in this situation? Common sense pushes us to see what’s right in front of us.

I was right to be concerned. Six months later we’d be back.

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