Older Patients, Wiser Care
5 Reasons Doctors Might Resist If You Ask to Stop Dementia Meds
Last updated: Dec 18, 2009
I recently wrote about the question of [whether dementia medications, such as donepezil (Aricept) and memantine (Namenda), really help] (https://www.caring.com/blogs/wise-care-for-older-patients/do-alzheimer-s-drugs-really-help-alzheimers-symptoms), especially in the later stages of dementia. The post was wonderfully enhanced by the comments readers shared.
One issue that was mentioned several times: receiving pushback from doctors and nurses in response to your bringing up the idea of stopping dementia meds, even for a trial period.
I'm not surprised to hear that. Let me offer up five reasons why a doctor or nurse might resist that suggestion.
1. Concern about "rocking the boat"
As many of you know, people with dementia have ups and downs no matter what any care provider does -- but over time, they eventually get worse. The trouble is, if there's an up or down after we doctors stop a medicine, we have to consider that maybe it was because we stopped the medicine. Or, even if we think it's probably not because we stopped the medicine, we worry that the family will blame the stopped drug. It's human nature, after all, to look for associations; it often feels a bit wrong to accept that an up or down is probably due to chance, or to something we can't control. Because of all this, doctors and nurses often hesitate to change things if everything seems to be stable. "Do I really want to rock the boat?" I've asked myself at times. I bet some of your loved one's doctors have asked themselves the same thing.
2. The influence of pharmaceutical advertising
Pharmaceutical companies provide a great service to society by providing us with many drugs that make our lives better and longer. But, it's not clear that drug company advertising is as helpful, especially when it comes to drugs, like dementia drugs, that have at best a small effect. The trouble is that advertising, of course, is designed to make people want something. And studies have shown that doctors, like everyone else, are influenced by advertising, even though they're often unaware of it.
Think about all those ads you've seen on TV and elsewhere promising that this-or-that drug will help your loved one's dementia. Doctors see those and are also exposed to special activities just for prescribers that the drug industry spends billions on every year. These include sending representatives into the office with lunch, free samples, and "education" about the drug. Or there can be bigger perks, like funding conferences or educational activities in medical schools. The catch is that this industry activity can interfere with doctors having the best, unbiased information. The prestigious Institute of Medicine was concerned enough to issue a [report] (http://www.nytimes.com/2009/04/29/health/policy/29drug.html?scp=1&sq=free%20drug%20samples&st=cse) about the issue last May. It got many doctors to pay attention, but advertising and marketing remain pervasive in the lives of those of us in the medical community. That means these messages might affect a doctor's belief that dementia drugs are having a big impact on your loved one, whether or not that opinion is supported by the best scientific evidence.
3. A lack of time to keep up with the latest guidelines
In an ideal world, doctors would have the time and energy to remain up-to-date on high-quality medical research, and on evidence reviews like the one [I referred to] (http://www.annals.org/content/148/5/I-41.full) a few weeks ago. Research studies are especially important when it comes to drugs like those for dementia, which don't produce dramatic effects right away (or in most cases, ever). But again, doctors are normal people, with mostly busy lives. Keeping up with evidence-based reviews and guidelines published by the most important medical journals can be tough.
4. Hope and the placebo effect
The placebo effect is the well-known tendency of people to report an effect, even when a patient has been given a "sugar pill" that doesn't contain an active drug. Caregivers and patients aren't the only ones to be influenced by the placebo effect. We doctors feel it too. Somehow, hopes that something will help often feel realized. Nobody knows exactly why or how this effect works, but it's definitely there. And when it comes to a difficult disease like dementia, for which we still don't have a cure or a way to really slow down disease advancement, it can be hard to resist the hope that the drugs are helping, even if the science says "probably not."
5. Over-reliance on personal experience
Some doctors and nurses may be convinced that stopping dementia drugs in a late-stage patient is bad because in their experience some of these patients seemed to get worse after drugs were stopped. The thing is, cognitive psychologists have proven that there are lots of pitfalls linked to relying on personal experience, especially when it comes to fuzzy results like whether someone's dementia is worse. Remember, doctors used to be convinced by their personal experiences that practices like bleeding patients were useful; it was a big step forward when medicine developed a better research tradition, which depends on less biased methods to figure out what works. Still, some doctors out there are more certain about the conclusions they've drawn from their personal experiences than they should be.
So what should you do if you'd like your loved one to take a trial off dementia medications but your doctor is resistant? If you're here at Caring.com, you're already making an effort to get yourself informed, which is a great place to start. Here are a few other suggestions:
Know that whether to continue a drug is fundamentally up to the patient, or, for a person with advanced dementia, up to the health-care decision maker.
Remember that none of us, doctors or caregivers, can know exactly what will happen after we stop a drug. Yes, changing things always runs the risk of "rocking the boat." But as many of you pointed out, most people don't notice any real difference after dementia drugs are stopped in the later-stages of dementia. Doctors and nurses aren't the ones paying for the drugs, though, so they may feel a little bit less motivated to risk rocking the boat than family is.
Know that there's no good evidence to show that it's ever wrong to try stopping dementia drugs or that doing so will cause real harm. Can a trial off dementia drugs cause an irreversible decline? Well, anything's possible, but there's no evidence that a trial stopping a dementia drug will cause permanent harm. And in moderate-to-severe dementia, it's probably better to worry about things that we know are linked to triggering a decline, such as getting delirium.
Remember to step back, take a deep breath, and acknowledge the big picture. For now, the sad truth is that dementia eventually gets worse no matter what we do. Especially when it comes to people who are in late-stage dementia, worrying about harm from stopping the drugs is basically sweating the small stuff, and is very unlikely to help your loved one's quality of life.