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Slow Moving Diagnosis: Part 4 – Arriving at dementia

Robert sat on the edge of the bed and stared out the front window, underwear in hand, clothed only from the waist up. His head bobbed up and down as his lips moved in time to a beat I could not hear.

“I’ve counted 137 trees.”

“That’s a lot of trees.”

“Yes, I counted 243 yesterday.”

“That’s interesting.” Pause. “Are you going to finish getting dressed?”

“Yes. When I’m done counting.”

What is going on?

I reached out to Dr. Franks again six months after Robert received an assessment of mild cognitive decline, possibly caused by a stroke. Strokes can affect cognitive function, but the changes in Robert’s behavior couldn’t be explained by a stroke. Robert was increasingly disinhibited and was starting to demonstrate repetitive behaviors. He had changed so much that I needed further guidance on our next steps. I needed to demarcate where we were in the disease process and what would be necessary to keep our lives running more or less on track. 

We again met with neuropsychologist Dr. Tai for a second series of cognitive function tests. Dr. Tai cemented the diagnosis with this second round of testing and Robert’s previous brain images.

Robert was formally diagnosed with behavior variant Frontotemporal Dementia (bvFTD).

This time Dr. Tai reported that Robert’s disease had progressed to moderate cognitive decline. It was strongly recommended he stop driving. (More on that in an upcoming story.)

Types of FTD

There are 3 primary types of frontotemporal dementia: Primary Progressive Aphasia (PPA), movement disorders, and behavioral variant FTD (bvFTD). 

In PPA, a person loses their ability to communicate. Their first symptom may present as an inability to use or understand words (aphasia). The gradual disappearance of language can mask the underlying dementia for a while. But eventually, individuals with PPA will show the same loss of judgment and reasoning skills that are typical of all dementias. PPA is the type of dementia with which Bruce Willis has been diagnosed

Patients diagnosed with movement disorders associated with FTD are unable to move parts of their body (usually their arms and hands) even though their muscles are strong enough and they want to move their body. The nerve cells that initiate and control the movements have atrophied. There are also FTD movement disorders with symptoms similar to Parkinson’s Disease (parkinsonism) and amyotrophic lateral sclerosis (ALS). These disorders are called frontotemporal dementia with parkinsonism and FTD-ALS respectively.

Behavioral variant frontotemporal dementia is striking in that persons diagnosed with the disease will have a relatively intact memory, so it’s not obvious initially that there is a problem. “This can’t be dementia if he still knows who I am, can it?” The most pronounced and problematic symptoms of bvFTD are changes in personality, loss of problem-solving skills (executive function), and inappropriate social behavior. Individuals with bvFTD will lose their judgment and may break the law. They may engage in repetitive behaviors, and become apathetic and insensitive to the needs of people around them and lose all social tact. They may lose interest in personal hygiene, exhibit inappropriate sexual behavior, or think nothing of urinating in public.

Find the good news

My first impulse is to find the silver lining in bad news. I’ve worked really hard to teach our kids to see the positive in an unwelcome outcome. 

“Well, you didn’t win the game, but now you don’t have to get up at 4:30am tomorrow to drive 5 hours to play the reigning champions!” 

“Yes, you broke your hand, but the good news is that you don’t have to have surgery!”

“Yes, a grade of 70% is too low a test score to move on with your cohort, but you’re calibrating. Next time you’ll have more information about what is expected of you.”

There’s always another way to tackle a problem. There’s always a “plan B,” right? Why not put a happy spin on a bad outcome? 

But not this time. A dementia diagnosis changes everything. Some people report being relieved to finally have a diagnosis, and I guess I felt some of that relief, too. Living without knowing what is wrong with your loved one can be debilitating on its own. But knowing that your loved one has a progressive disease from which they will never recover, for which there is no treatment, that will leave them incapacitated and unrecognizable as a partner does not lend itself to the development of a workable plan B.

There really is no good news here.


For a fuller discussion of the different types of FTD and their symptoms, visit one of the sources below:

https://www.nia.nih.gov/health/what-are-frontotemporal-disorders

https://memory.ucsf.edu/dementia/ftd/behavioral-variant-frontotemporal-dementia

https://www.hopkinsmedicine.org/health/conditions-and-diseases/dementia/frontotemporal-dementia

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