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Understanding the latest trends in Alzheimer’s research

Q and A with Dr. Rebecca M. Edelmayer, director of scientific engagement at the Alzheimer's Association

Phil Gutis by Phil Gutis
June 21, 2019
in Featured, My Alzheimer's Journey
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Phil Gutis gets an infusion as part of a drug trial that eventually failed.

Phil Gutis gets an infusion as part of a drug trial that eventually failed.

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To seek help in understanding the latest trends in research, I reached out to the Alzheimer’s Association earlier this year. What follows is a partial transcript of a conversation with Dr. Rebecca M. Edelmayer, the association’s director of scientific engagement. The transcript has been edited for clarity.

Q: Thank you, Dr. Edelmayer for taking a few minutes to talk with me about the latest developments in Alzheimer’s research. As I mentioned, it is very frustrating as a person with Alzheimer’s to see so many news stories pop up about the latest breakthrough in Alzheimer’s research and to not be able to understand the relevance and importance of each individual story.

Typically the article is full of scientific language that doesn’t make any sense or it’s written by a PR shop and it’s got all kinds of flowery language that makes it sound like Alzheimer’s is going to be cured tomorrow.

With all that in mind, what do you think were the most important recent developments in Alzheimer’s research?

A: One of the first important developments came out at the Alzheimer’s Association international conference last summer where the results of the SPRINT MIND Trial were released. That research looked at intense control of blood pressure and how that potentially decreased risk for cognitive decline. It was one of the first studies of its kind and the largest study of its kind to release data. The results suggest that you could decrease your risk by intensely controlling blood pressure.

So when we look at that information it really gives us some validation in thinking more about lifestyle intervention and how we may actually have the tools to control some of these things in our life that could decrease our risk for cognitive decline.

The Alzheimer’s Association is actually running one of the largest first-of-its kind clinical trials looking at lifestyle intervention and when we look at that SPRINT MIND Trial it really validates the idea behind looking at diet and exercise and control of cardiovascular health and social and cognitive simulation. These things that have shown some evidence that they may improve or I should say decrease our risk for developing cognitive impairment but we don’t have the data yet.

Many of these studies that are being published in the news are about lifestyle intervention and how a particular diet or particular food or particular type of exercise may decrease your risk for developing cognitive decline. But we really need evidence behind this, credible evidence that requires large-scale and long-term clinical trials.

The field right now is very focused on making sure that some of those trials are being designed and we will soon hopefully have data that will lead us in a way to help understand what that exact recipe is when it comes to lifestyle intervention.

Rebecca Edelmayer of the Alzheimer’s Association

Q: I definitely see tons of information about lifestyle intervention in my social media feeds. Some of the claims seem to be extraordinary and truthfully sort of unbelievable.

A: We believe that extraordinary claims should require extraordinary evidence and there have not been clinical trials run on the protocols and diets that are being recommended.

We are seeing a little bit of a push back from the scientific field saying we need to focus on the science and data to support the idea that lifestyle intervention could decrease the risk for cognitive decline. We need to see the data to be able to make a responsible recommendation to people for the future.

Q: At the same, though, there’s really no reason why you shouldn’t try and control your diet and exercise.

A: Exactly. Most of these lifestyle plans are good ideas but they haven’t been studied in large populations so they may not be generalizable to everyone and they may not be the best recipe for everyone. There is not a lot of harm in doing the things they are suggesting. But it goes too far to make claims that these lifestyle interventions could potentially cure you or decrease your risk.

The one thing that we can say for certain is that taking care of your body — exercise and diet and taking good control of your cardiovascular health and spending time getting an education and challenging your brain — are going to be helpful for your brain health. All of these things have little bits of evidence here and there that would suggest that they are very good for our overall brain health.

So it’s not that there is a complete lack of evidence. It’s just that making those strong claims is something we take very seriously because there is the potential for people to hold onto something or be disappointed.

In the end, we don’t necessarily believe that lifestyle intervention is going to be a cure for Alzheimer’s disease. It’s likely going to be something that can decrease your risk. Combining these lifestyle interventions with something like an approved medication is probably the kind of therapy that we’re looking at for Alzheimer’s disease and other dementias in the future.

It is very similar to the way we currently treat other chronic diseases like cardiovascular disease. We see the potential benefits of those kinds of therapy but now just need to put the evidence behind it.

Q: I’ve also been reading a lot suggesting that inflammation may be contributing to the risk for Alzheimer’s disease. Where does the research stand on that?

A: One of the lines of research into the biology of Alzheimer’s disease is looking at how the immune system could play a role, how inflammation plays a role in the neurological health of the brain.

This line of inquiry wouldn’t be possible if it were not for the quadrupling of federal funding for Alzheimer’s research. We are now at just over $2 billion a year. This amount brings us closer to what other diseases have been funded in the past and it really allows us to put our resources toward potential biological causes for Alzheimer’s.

Until now, we really had to focus a lot of our resources on the mature and viable areas of research but now we have the funding to allow us to think a little bit outside the box. We can invest in the more tried-and-true ideas related to amyloid and tau but we’re also starting to see a lot of the new money going into a deeper dedicated dive into some other possible mechanisms behind the disease. Scientists can now think about Alzheimer’s more broadly and more deeply.

Q: Is it also fair to say that the increased federal funding lifts the commercial pressure? The idea that a drug is being developed because there is a potential enormous financial pay back if you succeed. Do scientists now have the freedom to go broader and deeper without worrying so much about is this going to immediately be financially something feasible?

A: That’s one way to look at it. Another huge benefit of the federal funding is that we’re seeing a new generation of people that are dedicated to figuring out the biology of Alzheimer’s. They recognize that Alzheimer’s and other dementias are a huge public health issue that needs investment from all angles. It certainly needs the pharmaceutical industry but we also must have the government deeply invested. With government investment, academic institutions can become more engaged and then we have scientists all over the word involved to really find a solution.

Q: In addition, as some of that very basic research starts to mature, some of it might find its way into commercial pharmaceutical development?

A: Absolutely and I would emphasize that we work very closely with the National Institutes of Health to make sure that there is a diversity of research at the basic science level and beyond. The Alzheimer’s Association also has a large international research grant program with a diversifying portfolio.

Now we have some additional funding to dedicate to some great ideas that were just not fundable in the past. So you see new ideas that then can potentially be scaled over time. Ultimately some of them could attract investment from the biopharma industry.

Q: Right. So when you look at some of these things that I dug up everything from coffee can inhibit beta amyloid plaque to brain barrier trial phase two using focused ultrasound to treat a patient with early stage Alzheimer’s to a blood brain barrier that was opened successfully. Is there a way for people to understand these individual reports instead of being bewildered by the individual claims?

A: One way to look at these stories is that many of them are very preliminary. Ultimately there might be something to an idea but much of the evidence is very preliminary. I agree that some of it can be very exciting and there’s definitely a need for more research. At the Alzheimer’s Association we absolutely believe that we must try to leave no stone unturned.

Another way to look at this is that scientific discussion is very important and it needs to be out in the public because scientists need to be able to read others’ research and also then have a discussion about it and come to a consensus about the data and whether or not they actually want to run themselves another experiment to prove or disprove the idea.

My Alzheimer’s journey is an ongoing series by Phil Gutis, a former New York Times reporter and civil liberties and environmental advocate who was diagnosed with early-onset Alzheimer’s in 2016. He writes about his personal journey and about research and other developments.

Phil Gutis

Phil Gutis is a former New York Times reporter and civil liberties and environmental advocate who was diagnosed with early-onset Alzheimer’s in 2016.

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