[This post was first published on The Health Care Blog on 2/19/13, titled "The Four Things You Should Absolutely, Positively Do For Somebody at Risk of Developing Alzheimer’s"]
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.
Four 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 dementia:
- 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 Caring.com 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 following:
- 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 solutions. 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.
Summing 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 Alzheimer's.
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.