Repost: How to Evaluate the Latest Dementia Treatment "Breakthrough"

Oct 5 8:25am | Dr. Melanie Chandler, HABIT FL Director | @drmelaniechandler | Comments (4)

Man Looking In Microscope

A recent conversation with one of my trainees about supplements or the latest dementia treatment "breakthrough" got me thinking about this post from Dr. Shandera a while back.  We get asked ALL OF THE TIME from our patients what we think of this program or that product they saw advertised to dramatically improve dementia or MCI.  It can be difficult to weed through it all.  I hope Dr. Shandera's post is helpful.

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The lack of available treatments for Mild Cognitive Impairment (MCI) is frustrating for patients, families, and providers. When a new study or possible treatment approach comes out, it often gets featured in the mainstream media, and it can be hard to remind yourself to hold your excitement until you know more about the quality of the evidence being presented. If you’re not a scientist or healthcare provider, this can feel easier said than done. However, you can weed out the bad apples and flimsy claims by doing a little extra digging.

Here are a few points to consider:

  1. How big was the study?
    • The article you see may not give an exact number, especially if it’s in the lay media (e.g., a magazine, internet, or newspaper article). But, you can look for clues such as the words “case study” or reference to one or two individuals to tip you off to the fact that this report is based on a very small number of people.
    • In general, the smaller the number of people in a study, the less you should trust that the results may apply to you. In research, the most convincing evidence comes from studies of big groups of people.
  2. Was the research independent and free of bias?
    • It’s important to know who is reporting the findings. Sometimes, supplements or cognitive training products (e.g., brain training) mention lots of research with impressive sounding findings. But, if you look carefully, you can see that the research has all been done by the company actually selling the product or supplement.
    • Along the same lines, be alert for flashy advertising and “research” claims that are part of an attempt to get you to spend money on something. Be especially careful about internet sites that want you to pay to find out about the latest way to prevent Alzheimer’s disease.
    • As a rule, supplements (vs prescription medications) are NOT evaluated or monitored by the FDA, and so companies can make strong claims that have not been proven.
  3. Have the findings been confirmed by another study?
    • The most convincing and compelling research findings have been “replicated” or reproduced by 2 or more independent groups of scientists. Showing the same result no matter who does the research is a great way to increase the likelihood that a finding is something to get excited about.
  4. What does your healthcare professional think?
    • If you’re really curious about a particular finding and think it might be worth trying out yourself, be sure to talk to your healthcare provider and get their opinion first. Healthcare professionals typically have access to research that is not available to the general public, and are in a good position to judge the quality of evidence. They can also be alert to any risks or side effects that might come from taking a supplement with your regular medications.

Learn more about how to be savvy about non-traditional treatments in this Mayo Clinic article https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/alternative-medicine/art-20046087

Chime in! How do you evaluate company or research claims? How do you guard against scams?

I have been diagnosed with MCI and am not a doctor, just a patient. I agree with all the information Dr. Chandler presented and use her guidelines. I would like to add that one should beware of the headlines in the news. You have to read the entire article to find that the breakthrough solution is one only tested on mice so far or the recommendations for an Alzheimer's cure is made by someone who refers to "studies" but never lists them. There have been peer reviewed studies that show lifestyle changes, exercise, healthy diet, quality sleep, meditation, and stress reduction may help delay progression of dementia, but not one study has said these changes are a cure. I'm making the recommended lifestyle changes. For now, they are working for me while I wait for a cure. I've joined a few research studies that may prove to be helpful in the future.

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We can also see varying opinions on the new drug. Some docs on the advisory panels resigned over the approval. Others seem to praise the drug. That leaves us to figure out who and what to trust.

***You will need to switch to reader view in your browser to see these because of login pop ups – going to reader view works around this.
https://www.brainerddispatch.com/newsmd/health-news/7073291-Mayo-neurologist-2-other-experts-quit-FDA-committee-over-Alzheimers-drug-approval
https://lacrossetribune.com/news/local/mayo-experts-react-to-approval-of-alzheimers-disease-drug/article_c28774ed-c628-5f9c-9821-8309fb65efc4.html
You can see the range of opinions – both from the same organization,

Peace
Larry H.

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@sharonsf

I have been diagnosed with MCI and am not a doctor, just a patient. I agree with all the information Dr. Chandler presented and use her guidelines. I would like to add that one should beware of the headlines in the news. You have to read the entire article to find that the breakthrough solution is one only tested on mice so far or the recommendations for an Alzheimer's cure is made by someone who refers to "studies" but never lists them. There have been peer reviewed studies that show lifestyle changes, exercise, healthy diet, quality sleep, meditation, and stress reduction may help delay progression of dementia, but not one study has said these changes are a cure. I'm making the recommended lifestyle changes. For now, they are working for me while I wait for a cure. I've joined a few research studies that may prove to be helpful in the future.

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I believe I have some form of early memory loss. I get my annual physical next month. My husband is very supportive & this is still a minor problem but I'm worried & anxious.

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Hi Marion,

I'm glad you have an appointment next month and can discuss your memory concerns with your doctor then. Try not to be too anxious until you speak with him as I think anxiety makes it harder to remember things. It's wonderful to have a supportive partner. Does he think you are experiencing memory problems? Make sure to take notes about of examples of when you think you are having memory problems to discuss with your doctor. Ask your doctor if he thinks you should see a Neurologist or if you should have a work up to eliminate other reasons for possible memory loss.

https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/memory-loss/art-20046326 Be sure to scroll down to this section: Reversible causes of memory loss.

Best, Sharon

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