Four things people with possible Alzheimer’s really need

Do they need a PET scan to confirm
the presence or absence of amyloid plaque? 
More importantly, would doing such
PET scans make meaningful impacts on patients’ health?
Those are the questions that a
Medicare expert panel recently considered, and their impression, after
carefully reviewing lots of high-quality research, is that we don’t yet have
evidence supporting the benefit of using the PET scans. Unsurprisingly, some experts
disagree, including a working group convened by the Alzheimer’s Association.
This group of experts reviewed the evidence and common clinical scenarios, and
concluded that in certain select situations, use of the PET scan would be
appropriate. (See their guidelines here.)
As someone who evaluates many memory
complaints, I’m certainly interested in Medicare’s inquiry, and in whether
they’ll decide to cover the scan. (The NYT’s New Old Age Blog has a nice summary of the debate; a good read if you haven’t seen it yet, esp the comments.)
Also, I blogged last fall about how I thought the new
scan could and wouldn’t help

clinicians like myself evaluating cognitive complaints, especially in those who
likely have early dementia. In particular, I commented on the difficult period
of uncertainty that we often go through, as we wait to see if subtle problems
progress or not.
Would the PET scan meaningfully help
with that period of uncertainty? Hard to say, and it hasn’t yet been tested. I
myself think that this period of uncertainty can be pretty hard on families,
but measuring this burden is tricky. (Much easier to measure hospitalizations
and utilization!) 
I also suspect that it’ll be hard to
prove benefit from “knowing earlier,” in large part because our
healthcare system is currently so poorly equipped to meaningfully help people
with a new dementia diagnosis.
Which brings me to the part of this
story that has me annoyed. 
It’s *not* that CMS is unlikely to
cover the scan soon, since there’s no clear evidence of benefit. Given the
financial difficulties facing Medicare, I think it’s quite reasonable to not
cover the scan at this time.
No, what annoys me is the way that
prescribing medications — specifically, cholinesterase inhibitors and
memantine — seems to be the first thing we talk about when we discuss managing
Alzheimer’s. For instance, the Alzheimer’s Association’s proposed guidelines state that a potential benefit of the scan is that
“increased certainty of the diagnosis could provide a basis for earlier
and more consistent drug treatment, avoidance of treatments unlikely to afford
benefit, and improved monitoring for likely complications and adverse drug
effects that are relevant to specific dementing diseases.”
Similarly, the New Old Age coverage
quotes Dr. Rita Redberg, chairwoman of the Medicare Evidence Development and
Coverage Advisory Committee, saying “Would you want to know you have an
increased chance of getting a disease in (the future) when there are no
effective treatments available and you might not even get it in the end?”
As you might notice, one group says
“we can help by getting certain people on drug treatment sooner,” and
the other says “there are no effective treatments” (which they say
because the data overall on the effectiveness of cholinesterase inhibitors and
memantine is pretty weak, having been described by the American College of Physicians as
“clinically marginal.”
I say, enough about drugs for
Alzheimer’s. We need better ones, but they aren’t here yet.
In the meantime, there is lots that
can be done for people with possible Alzheimer’s, or early Alzheimer’s, and
that’s what we should be focusing on.
things people with possible Alzheimer’s need:
Here’s what I recommend to patients
and families when there’s a possibility of Alzheimer’s or another type of
  • Avoid medications that make cognition worse.  In particular, avoid sedatives and
    anticholinergics. Older adults and people with cognitive impairment are
    especially prone to get worse when taking these medications.
    Unfortunately, although many docs are quick to prescribe Aricept or
    Namenda, far fewer will help a patient taper off Ativan, or Ambien. (I
    come across far too many patients on dementia medications AND on
    sedatives.) This is a huge problem. Not only have these drugs have been on
    the Beer’s list for decades, but now evidence is accumulating that
    people taking these drugs develop dementia at higher rates (see here and here).
    The trouble, however, is that physicians find it much easier in a busy
    clinic visit to prescribe a sedative than to troubleshoot someone’s
    anxiety, or insomnia. Plus many patients are loath to give up sedatives.
    Then again, most have not been told that their sedatives are almost
    certainly making them mentally worse than they’d be otherwise.
  • Avoid delirium.
    Delirium has been linked to further cognitive deterioration. This means that if you’re worried about possible
    Alzheimer’s, you and your family should learn about delirium ASAP: what it
    is, how to recognize it, how it should be worked up, and how to avoid it.
    Medications are often a contributor to delirium, so there’s another reason
    to review the Beer’s list and look out for sedatives and anticholinergics.
    For those who need to be hospitalized, proven strategies exist to minimize
    the risk of developing delirium, such as the Hospital Elder Life Program. At the caregiving website there is also a Delirium and Dementia Solution Center which has some good info (disclosure: I wrote most of
    it), and should be helpful even to those who don’t have a definitive
    dementia diagnosis.
  • Minimize stress in the affected person. Minimizing stress is important in order to help the
    person function in the best mental state possible. This means working on
    things like a regular routine, good sleep habits, and offering assistance
    with any anxiety related to the ongoing workup, or other life stressors.
    It may also mean reducing the person’s load at home or in the workplace if
    he or she is still working, simplifying the medical plan, and encouraging
    a family to offer a little extra support. Regular exercise is also good,
    both for stress reduction and because it seems to improve cognitive function.
  •  Help the caregivers cope. Helping a
    person’s caregiver or family is key to minimizing stress on a cognitively
    affected person, plus it’s good for the caregiver’s health as well. I find
    that when dementia is a possibility, caregivers need help with the
    • Basic management techniques to help people with
      cognitive impairments
      This means things like not expecting a loved one to be as rational or
      independent as before, and just helping a loved one find stability and
      feasible solutions.
    • Constructively working with their fears, frustrations,
      and sorrows
      . Stress-management techniques
      and cognitive-behavioral approaches can be great, when people are able to
      access them. I also encourage caregivers to access support groups.
    • Help coping with uncertainty. First there’s the uncertainty of “is this
      Alzheimer’s or another dementia?” Later there will be other
      uncertainties (how fast will he change? is she safe at home? should we
      pursue this knee surgery? etc.), so it’s good when caregivers can learn
      to be more comfortable with uncertainty, while still working to get good
      care for their loved one.
    • Learning to engage and develop individualized
      . Caregivers often look to us
      clinicians to fix a problem, but in many cases, there is no standardized
      pill or test to prescribe. Instead, what’s often needed is a little
      behavioral trial-and-error, to figure out what works for this particular
      person. For example, one older impaired man’s family kept coming to me,
      upset that the patient was not taking his diabetes medication. (He was
      one of those “it might be very early Alzheimer’s; too soon to tell
      for sure” patients.) I kept explaining to them that they needed to
      find some way to help remind him, or encourage them, and that I couldn’t
      tell them exactly how to do it.
There are, of course, still more
ways we can try to help people facing a possible Alzheimer’s diagnosis, but I
feel that the above four points are especially high value and are applicable to
almost all patients with possible Alzheimer’s.
The thing is, we can right now help
people along the above fronts, but we generally don’t. Our healthcare system is
poorly set up to do these things, and we are lacking tools to facilitate. For
instance, I don’t yet know of any apps that allow the lay public to easily spot
medications that make cognition worse. We could use better resources and
technologies to help families learn about delirium and other strategies for
cognitive optimization. Re caregiver support and possible dementia, most of
what I come across is framed for caregivers of people with a definite
diagnosis. We need more for those facing the possible diagnosis. Furthermore,
although several effective programs have been developed to support dementia
caregivers — the suggestions I make above are pretty typical for supporting
dementia caregivers — they are often hard to find on a local level. (I
recently tried to find a place to refer caregivers to get the REACH program of education and support; no luck yet.)
How much would it help if we could
systematically help those with possible dementia in the ways above? I’m not
sure, I don’t think it’s yet been tested.
But as we debate whether the new PET
scan will meaningfully improve outcomes, it’s important to remember that there
is much more that we can and should be doing, despite the fact that the drugs
we have now are of debatable effectiveness.
it up
It seems unlikely that Medicare
covering the new PET scan will overall improve patient outcomes, however this
is not just because we currently don’t have good pharmacological treatments for
In fact, there are several things
that we can do, when facing a possible Alzheimer’s diagnosis, to keep a person
cognitively optimized and to support families. These interventions are often
overlooked. They include: avoiding certain types of medications, minimizing
delirium, minimizing stressors, and supporting caregivers.
We could and should do a better job
of encouraging people concerned about possible dementia to use these
strategies, whether or not Medicare decides to cover the new PET scan. We also
need technologies and systems to make it easier for people to use these strategies.

Speak Your Mind