How the new brain scan for Alzheimer’s could help, and won’t help

There’s
a powerful new Alzheimer’s diagnostic test (the new brain scan) on the block, and now we’re all
going to have to decide if we want to use it or not. (My colleagues at GeriPal.org seem generally skeptical.)
This
is an especially relevant question for a outpatient geriatrician like me: I’m
often confronted with the complaint of memory problems, I do a fair amount of
diagnosing dementia (usually on my own, with the occasional referral to a
memory clinic or neurologist), and I do a lot of counseling of patients and
families, usually over the span of months to years.
In
other words, I field memory complaints and dementia diagnosis as they appear in
the primary care clinic, and with the aging population surging into Medicare, I
essentially do what front-line generalists will need to do for millions of
elders over the next 10-20 years.
So
would I order this scan, for someone with memory problems?
How would this help
or hinder me, and the families I’m trying to help? What kinds of benefits and
harms will we get for the extra cost of this test, given that there is
currently no cure for Alzheimer’s and not even any reliable ways to slow the
progress of this devastating disease?
A  recent NY Times article highlights these questions, and features some of the first private patients to have the new
scan. It’s a good story, and if you haven’t read it yet, you should.
But
it’s the story of trying to confirm the presence or absence of Alzheimer’s
disease.
Whereas
in my world, the story is about how to help people with memory impairment. Which
is not quite the same story, and involves slightly different questions. In
particular, I don’t just think “Is it or is it not Alzheimer’s?” What I think
about is:
  • Is this
    dementia?

    With patients, I usually explain that dementia means developing permanent
    brain changes that make memory and thinking skills worse, to the point
    that daily life skills are affected. I then explain that Alzheimer’s is
    the most common underlying cause of permanent brain changes. 

  • Is anything
    making this person’s cognition worse than it would otherwise be?
    It’s
    especially common to find that medications (such as benzodiazepines for sleep) are making older people worse. Several other medical conditions
    (i.e. hypothyroidism, depression) can worsen cognition and should be
    checked for as well.

  • Any special
    neurological features that I should make note of?
    I briefly
    check for signs of parkinsonism, hallucinations (common in Lewy-Body
    dementia), or neurological changes suggestive of subtle strokes. But
    otherwise I don’t spend too much time trying to pin down the underlying
    dementia, unless something strikes me as distinctly odd. Overall, I find
    the principles of helping patients and families with dementia are
    basically the same for the most likely causes of dementia (Alzheimer’s,
    Lewy-Body dementia, vascular dementia).
The
patient and family, of course, have their own questions and concerns. They
certainly do often ask if it’s Alzheimer’s. But we shouldn’t answer that
question too narrowly. Many people don’t understand the difference between
Alzheimer’s and dementia (I’ve had people tell me “Thank God it’s notAlzheimer’s” when I broke the news of likely dementia). But overall, what scares
them is the specter of progressive cognitive disability.
Most
of all, in my experience patients and families want to know:

  • What
    is going on?
  • What
    should we expect for the future? 
  • Will
    this get worse? How fast?
  • What
    kind of help is there? Are there treatments?
  • How
    will we manage?

Back
to the article. What would’ve happened to those patients if they hadn’t had the
scan? And what is still left undone or unresolved after the scan?
Consider
Awilda Jimenez, the woman featured at the start of the Times story, who becomes
forgetful at age 61. Here’s how things usually unfold when I see someone like
her:
  1. I make a preliminary assessment of cognitive
    abilities.
    I use a combination of office-based cognitive test, like the
    Montreal Cognitive Assessment, and asking about function, especially IADLs like finance and driving. The article doesn’t say how Ms. Jimenez scored
    on these (one hopes they were checked before offering her the scan), but
    it’s not uncommon for someone with early Alzheimer’s to score 24 on the
    MOCA and have problems with memory and finances.
  2. I also look for exacerbating factors, like
    medication side-effects, or other illnesses.
    Let’s assume I find none.
    Let’s also assume the neuro exam is generally benign (other than the
    thinking problems).
  3. I then explain to the patient and family that
    there does seem to be evidence of problems with memory and thinking.
    If
    the problems are fairly prominent, we start to discuss the diagnosis of
    mild dementia, and that it’s probably Alzheimer’s. If the problems are
    subtle and things feel inconclusive to me, or if the family wants more
    evaluation, we talk about referring for neuropsychological testing, to get
    further insight into the cognitive problems.
    • Let’s say the neuropsychological testing comes
      back indicating deficits; a common conclusion is that the findings “may
      be consistent with an early dementia such as Alzheimer’s.” Then I get to explain to
      patient and family that it’s probably dementia, probably Alzheimer’s,
      could be vascular or another, generally slowly gets worse but occasionally
      seems to stop
  4. Let’s see how this evolves. I almost always end up telling families that we will need to see what
    happens over the next 6-12 months. 
  5. Practical strategies for right now. I coach families on avoiding
    psychoactive medications and other common causes of delirium. I also encourage them to look for dementia support groups, and try to point them towards resources for learning more about living with dementia.
In
other words, as things currently stand, evaluating memory impairment in someone
who’s early in the dementia process often ends up with our telling patients
that they probably have something bad
: mild dementia, most likely Alzheimer’s.
This
uncertainty is frustrating for clinician and patient.
(It’s even worse when the
deficits are in the range of mild cognitive impairment, or in that “is this
affecting daily function?” gray area.) So it seems that the new brain scan
should be a boon, with its ability to give a definite yay or nay on whether
Alzheimer’s is present.
Today,
patients and families can cling to the hope that maybe it’s not Alzheimer’s,
maybe it won’t keep getting worse, maybe it’s something else. I have seen
patients and families resolutely set aside the possibility of Alzheimer’s (why
dwell on the possibility of something horrible coming into your life), and
other families obsess over the issue for months. 
Regardless of which approach
they take, in most cases, the cognition keeps getting slowly worse, and 1-2
years later the family is enmeshed in caring for someone who has become quite
cognitively disabled. At that point, they are trying to survive and we clinicians
are trying to help them maintain the best quality of life possible.
Back
to the new scan. I would briefly summarize the benefits and burdens as follows
(for patients in the mild/early stage of symptoms): 
Benefits:
  • Reduces period of clinical uncertainty for
    those patients who in fact have Alzheimer’s.
    • With a positive scan, families could more quickly move into grieving, acceptance, and hopefully planning for the
      upcoming challenges. (Engagement!)
    • Although there is no cure and drugs don’t
      tend to delay progression very much, clinicians can and should focus on the many ways to optimize
      the person’s function. Caregivers can focus on getting from coaching and support.
      Other clinicians should be alerted to the diagnosis and modify their work
      accordingly.
    • A negative scan in someone with
      symptoms would presumably spur a search for the real problem.
Burdens:
  • Takes a fair bite out of the payor’s wallet.
    Currently the scan is paid for out of pocket.
What the scan doesn’t do:
  • Offer an explanation for cognitive impairment
    in those patients who don’t have Alzheimer’s.
  • Identify co-existing vascular disease or other
    cause of progressive dementia.
  • Identify and modify factors worsening
    cognition, like medication side-effects or other illnesses.
  • Tell patients how quickly their dementia will
    progress, and what kind of help they will need in a year. The progression
    of Alzheimer’s is highly variable from individual to individual.
  • Provide dementia education and support to family
    caregivers.
In
short, whether we’ll benefit from the scan really depends on how much families
and clinicians benefit from eliminating that period of uncertainty, as well as
on our ability to provide good dementia evaluation, management, and support to
patients and families. 
Unfortunately
most dementia patients currently get sub-optimal medical care, and their
caregivers get inadequate coaching and support. 
If the scan helps bring people to the resources they need earlier, and
more effectively, I’ll be for it. But if it turns yet another radiologic money
suck and everything else continues as usual, I’ll be disappointed.

In a nutshell:

The pragmatic outpatient evaluation of someone with memory complaints involves much more than answering the question of whether or not there is Alzheimer’s pathology in the brain. 

However, using the new scan to get an answer to that question sooner rather than later could eliminate a lot of the uncertainty and watchful waiting that families and clinicians currently experience. 

If (and this is a big if) this helps patients and families access better dementia care sooner, the brain scans could be quite beneficial.

[Interested in Alzheimer’s diagnosis? Here’s a related post: Four things people with possible Alzheimer’s really need.]

Comments

  1. A thoughtful and practical piece – thanks for writing!

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