When the Doctor Won't Say the Word “Dementia”

It took three neurologists and a full year before anyone would say it out loud. If you are being told it's normal aging and you know better, this is for you.

Three neurologists, and a year

The first two would not give us a diagnosis. It took a full year to reach the third.

By the time we started looking for answers, I already knew. My wife Lori had paid the same bill twice and another one not at all. She had gotten lost driving to an appointment she'd driven to for years. She had left a griddle burning in an empty kitchen, and another time I came home to a house that smelled of gas from an unlit burner. The woman who had spent thirteen years repairing hospital laboratory equipment could no longer log into a website with a password.

We went through dozens of tests across 2015 — EEGs, scans, a steroid trial to rule things out. And we went through three different neurologists before we found one who could actually help. The first two simply would not give a diagnosis.

Lori was in her forties. I am convinced that is most of the reason.

The answer finally came on March 3, 2016: Alzheimer's, confirmed first by ruling out every other treatable cause and then by an amyloid PET scan. A year of our lives went into getting a word we already knew.

What the delay cost us

One of those neurologists cleared Lori to keep driving "close to home," over my objection. The first time she got behind the wheel after that, she was in a collision.

I bring that up not to settle a score. I bring it up because it is the cleanest illustration I have of something families are rarely told: a doctor's refusal to name what is happening is not a neutral act. It has consequences out in the world.

Nobody was seriously hurt. It could easily have gone the other way, and I think about that.

Why a diagnosis is not just a label

Almost every practical door in dementia care is locked behind a written diagnosis.

When people say “there's no cure, so what does a diagnosis change,” this is the part they haven't seen yet:

• Power of attorney. Most durable powers of attorney are “springing” — they take effect only when a physician certifies incapacity, often requiring one or two doctors' letters. No letter, no authority, and the alternative is guardianship: expensive, adversarial and slow.
• Benefits and programs. VA benefits, Medicaid waivers and the Medicare GUIDE dementia-navigation program all require a documented diagnosis. So does disability for someone still of working age.
• Treatment eligibility. The disease-modifying drugs are started at mild cognitive impairment or mild dementia. Time spent undiagnosed is time the disease keeps moving, and the window can close while you are still trying to get someone to write it down.
• Safety decisions. Driving, firearms, cooking, living alone. Families are far better able to act when a clinician has put something in the chart.
• Clarity about what you're facing. “Dementia” is an umbrella. Alzheimer's, vascular, Lewy body and frontotemporal dementia progress differently and respond differently — and in Lewy body dementia, certain common medications can cause serious harm. Knowing which one you're dealing with changes daily care.

Too old, too young — the same mistake

The dismissal comes in two forms, and both diagnose the age instead of the person.

One family I read about this month is fighting to get an 80-year-old's doctor to acknowledge anything beyond “normal memory loss for someone his age.” That's the first form.

The second is what we got. Lori was in her forties, and when someone that age presents with cognitive symptoms, doctors reach for the explanations that fit the demographic: stress, depression, burnout, perimenopause, a difficult marriage. Young-onset dementia is repeatedly documented as taking substantially longer to diagnose than late-onset — around four years on average from first symptoms.

Both dismissals share the same flaw. The doctor is reasoning from the age on the chart rather than the trajectory of the person in front of them. And a caregiver who has watched a decline for two years usually knows something a clinician cannot see in a fifteen-minute visit.

Why doctors hesitate

Understanding the real reasons is what lets you address them, rather than simply being frustrated by them.

Most of the hesitation is not laziness or indifference.

• The visit is short, and a person with early dementia can often hold it together beautifully for fifteen minutes. Social skills and old conversational habits survive long after memory has begun to fail.
• Anosognosia — the neurological inability to perceive one's own deficits — means the patient may sincerely report that everything is fine, and doctors are trained to take the patient's own account seriously.
• The label is heavy. Some clinicians delay it out of a genuine, if misplaced, wish not to frighten someone.
• For decades there was little to offer, and a habit of therapeutic pessimism set in. That habit has outlived the facts.
• Screening tools have real ceilings. A highly educated person can score in the normal range on a brief test while clearly declining from their own baseline.

None of these are reasons to accept a brush-off. They are the things you are working against, and each one has a counter.

How to make the record impossible to dismiss

Bring evidence of lost function, dated and specific, and put it in the chart before the visit.

This is the part I would do differently.

• Write it down as it happens, with dates. Not “her memory is bad” but “March 4 — paid the electric bill twice; March 19 — got lost driving to the dentist she's used for nine years.” Function, not forgetfulness. A plain notes app is enough; the point is the dates and the specifics. Our Cognitive Observation Protocol is the structured version, built to produce exactly the kind of record a doctor can act on.
• Send it through the patient portal before the appointment. This gets it into the chart as part of the record rather than as a hallway conversation, and it gives the doctor time to read it. It also spares you from listing your person's failures in front of them.
• Ask for specific things, not “a memory test.” Bloodwork to rule out treatable causes including thyroid and B12, a full medication review with attention to anticholinergics, brain imaging, and formal neuropsychological testing — which is hours long and far more sensitive than a ten-minute screen.
• Ask for the words in the note. “Would you be willing to document your impression in the visit note?” Then request a copy. If a diagnosis exists only in conversation, it does not exist.
• Ask the question that forces a plan. “If this isn't dementia, what do you think it is, and what's the plan to find out?” It is hard to answer “nothing” to that question, and it moves you from being reassured to having a next step.
• Bring someone. A second family member changes the dynamic in the room more than it should, and it means two people hear the answer.

When to change doctors

If you have brought a documented pattern of lost function and been dismissed twice, that is enough. Move.

It took us three neurologists. I wish it had taken us one, and I wish I had stopped trying to persuade the first two months sooner than I did.

Ask your primary care doctor for a referral to a memory clinic, a behavioral neurologist, or a geriatric psychiatrist. Academic medical centers and Alzheimer's Disease Research Centers do this work all day and are far less likely to shrug. Be aware that waits at these centers have grown — get on the list early rather than waiting until you're certain.

You are not being difficult. You are the only person in the process who sees this every day.