Dementia: We will need Neurology, but it’s GONE!

I practice traditional General Internal Medicine.  Increasingly, it is exhausting. Specialist support in many fields is gone.

For most of our region, Neurology has vanished.  Blame retirement, early retirement, and lack of new Neurologists.  There is simply no incentive to enter the field or remain in the field.  The field of Neurology is getting difficult.  A short list: TPA for stroke is super dangerous, but maybe helpful, effective Multiple Sclerosis drugs that are also really hazardous and, recently, weird stroke syndromes which look suspicious for Covid complications.

Add to that list: Dementia.

Up to now, dementia evaluation has consisted of a set list of labs and scans.  The treatment is Donepezil which is relatively safe and easy, though not especially helpful. Any Primary Care Physician can do it. It’s easy but depressing.

Soon, however, treating dementia will get complicated.  In just a matter of months, incredibly expensive and dangerous infusions will become available which may not even help.  Ads for the new drugs will be everywhere.  Patients will hear key phrases:  “It might help.”  “Start it EARLY!”

The cost will be so prohibitive that prescribing roadblocks will appear. As a Primary Care Physician, you will have no option but to involve a Neurologist now.  As patients and their families learn of these therapies, they will demand to see a Neurologist.  They will want the evaluation to happen now.  That means “NOW!!!!”

Yet, In our region of the country, the wait to see a Neurologist is literally half a year or more.

Think about this.

Everyone over the age of 60 experiences minor memory issues.  “Is it early dementia? YIKES!!! I need a Neurologist NOW!  Maybe I can get one of those new infusions!”

As of the time of this writing, the rush to infusions has just started.

Even prior to these infusions, overwhelmed Neurologists reached out to Primary Care Doctors, pleading for us to stop referring patients with cognitive complaints. The reality is none of these patients need to see a Neurologist. It is a waste of precious specialty resources. The scene in the PCP’s office, however, often gets nasty.   No matter how you respond, the answers will be unsatisfactory and the patients want a Neurologist to be involved IMMEDIATELY.

So, in an attempt to slow the flood, Neurologists demand a Primary Care referral.  You print up a referral, even if it is unnecessary because the confrontation will otherwise escalate even further. Unfortunately, the appointment is over six months away.  The patient returns to the PCP demanding to be pushed to the head of the line for their “urgent memory lapses.”

The PCP has already done a thorough exam, lots of scans, tons of lab work, cognitive screening questionnaires, and depression screening. Yet, this is not good enough.  The patient or the family yells at the PCP to “do better!!”  Often the patients even convince one of their other  specialists, such as Cardiology, to pressure the beleaguered PCP to “do more because the delay is unacceptable.” The patient-physician interaction turns into a lingering confrontation, no matter how hard the physician tries to please. When patients try to contact, on their own, Neurologists at big centers, they hit a brick wall.

Meanwhile, in an effort to reduce the long waits, Neurology brings in Nurse Practitioners.  The reality is dementia is so “cookbook,” physician extenders are perfectly reasonable.

Yet, this is not an acceptable option for the family and the pressure grows stronger on PCPs.  Again:  “You’re not trying hard enough.”

I liken the care of dementia in a few years to the current situation with Oncology.  In the old days, Oncology care was relatively brief and generally went badly.  Now, patients live for many years under the care of their Oncologists.  They also have expensive lives, receiving regular infusions of various drugs which cost several tens of thousands of dollars per month.  Multiply that by many years and you understand how cancer care is now one of the biggest expenses in medical care.  My cancer patients often add up their bills over the past year or two and find they have cost the system millions of dollars.

Meanwhile, dementia care is about to give cancer care some serious competition.  Already, long-term care for dementia is a great way to deplete even the most wealthy of savings accounts.

Yet, dementia care is about to become even bigger.  It will soon require massive numbers of practitioners to navigate the infusions which everyone will soon demand.  A lot of us are doubtful that many will actually find their lives improved, however.  Whatever happens, there will be lots of money spent and lots of need to accommodate this new line of business.

Don’t forget the frequent MRI scans and assessments to track dangerous brain swelling from the medicines.

How can you refuse dementia drugs, even if they probably won’t work?  “Doctor, if there is a chance of improvement or slowing the progression, no matter how small, I want to take it! How can you put a number value on my life and say the cost is too high?”

Who above the age of 60 has not expressed concern about their memory?  Are you sure you are not getting Alzheimer’s?

The harsh reality is we are not ready to medically evaluate, treat, follow up, or afford this tsunami of patients.

Don’t give me the argument that we will save money on long-term care facility costs by using these new infusions.  That was the same tactic used by Aricept reps years ago when the drug was still a brand name. The claim was proven to be totally false!

Even now, I have patients in studies receiving these infusions.  Some have already experienced serious side effects.  At the same time, I’m not seeing any slowing in disease progression, but this is not stopping them.  The train to exorbitant medical expenses has already left the station.

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