UsAgainstAlzheimer’s Tackles Alzheimer’s Disease Challenges

Alzheimer’s disease is the sixth leading cause of death in the U.S. There is no cure, although new treatments are available and ongoing research shows promise. But to the millions of Americans already affected by this terrible disease, Alzheimer’s takes a toll on every aspect of their lives. It also affects loved ones and caregivers in so many ways—physical, emotional, mental, financial and on and on.

The nonprofit organization UsAgainstAlzheimer’s has spent the past 15 years fighting for proper research funding, advocating for families and people living with Alzheimer’s, and calling for a system of early detection and access to treatments for everyone. BrainWise recently interviewed UsAgainstAlzheimer’s Chief Operating Officer (COO) Russ Paulsen about the organization’s successes, current priorities and the toll on caregivers.

Top photo: UsAgainstAlzheimer’s COO
Russ Paulsen and board member Jill Lesser.
At right: Russ Paulsen.

This Q&A has been edited for length and clarity.

BrainWise: UsAgainstAlzheimer’s was founded in 2010. Part of your mission is to “disrupt and diversify the movement to cure Alzheimer’s.” What does that mean for your organization?

Russ Paulsen: UsAgainstAlzheimer’s runs toward the hardest problems in Alzheimer’s. We focus on prevention and risk reduction, early detection and diagnosis, and access to treatments. For all of those, we want to make sure that that is available to everybody. Alzheimer’s disease disproportionately affects Black Americans, Latino Americans and women. Those are harder populations sometimes to reach with messaging and to make sure they have access. But, we run for the hard problems. We take risks, and we don’t stop until we win.

Tell me about some of these hard problems and your successes.

One of the first problems this organization took on was looking at how much investment the [National Institutes of Health] made in trying to understand, detect, diagnose and treat Alzheimer’s disease as a proportion of the number of people who have Alzheimer’s disease. We compared that to other diseases, and Alzheimer’s was just grossly under-invested in. UsAgainstAlzheimer’s founders were told at the time that getting a differential increase in funding for one particular disease is nearly impossible. But, with partners, over a decade, we moved the federal government’s investment in Alzheimer’s research from about $445 million to now nearing $4 billion a year. That was a hard problem. People told us it couldn’t be done. And the founders of this organization took it on and tried, and that set the tone for everything we do.

We also have been working for years to change practice [in medical offices]. It is a requirement for the annual wellness visit under Medicare for doctors to assess someone’s cognitive health, but the tools they can use to do that are really not specified.

One of the approved methods is what they call direct observation, which is roughly like assessing whether someone has high blood pressure by looking to see whether they’re red in the face. There are actual tools that can be used, and we have been working with Medicare and with Congress for several years now to increase the use of these tools in primary care so that patients can take the right next step for them in addressing any kind of concerns they have. That has slowly made progress.

Medicare this year is looking at each [physician] practice’s rate of detection and those that seem to have a lower rate of detection of Alzheimer’s disease than would be expected—if you’ve got a population of 1,000 people over 55 you probably shouldn’t be detecting zero cases of Alzheimer’s or dementia every year. So, Medicare is starting to look at that and incentivize [doctor’s offices that] take steps to improve their rate of detection.

Why is early detection so important?

Early detection is really a challenge. About half of people who die with Alzheimer’s disease have never been told they have Alzheimer’s disease. And that starts with detection. We have a tool people can use at home. It’s called BrainGuide, mybrainguide.org, and it allows people to read brain health information and learn about the signs of Alzheimer’s disease. They can also take a quiz to help them understand how they score against other people. While it’s not a diagnostic tool, it is something that people use to understand “where am I on my journey?” We hope that folks who score poorly will have the confidence to go to their doctor. And in fact, about three-quarters of the people who score poorly tell us that they’ve planned to go to their doctor.

Early detection is important for a couple of reasons. One is, if it is Alzheimer’s disease, there now are treatments available that can slow down the progression of the disease in most people. And those drugs work better earlier in the disease—the data seem really clear that the sooner people are treated, the better. They don’t work for everybody; they’re not right for everybody, but for those where they are right, it gives people a chance and a choice. It’s important for people to have that choice. If we don’t get the diagnosis early enough, we’re depriving people of that choice.

Let’s talk about caregiving. How is caregiving of a person with Alzheimer’s different from other diseases?

Alzheimer’s doctors will tell you that it is a mistake to think only about “the” patient because you really have two people who are affected by this disease, and as the disease progresses, it becomes an incredibly intense caregiver experience. Research shows that Alzheimer’s caregivers end up in the hospital more often than non-Alzheimer’s caregivers. I recently asked a group of patients and caregivers what the one piece of advice was they would go back and give their younger self when they first found out about this disease. One of the caregivers said, “Put on your own oxygen mask and make sure that Dad does too.” She said she spent more time in the emergency room with her father—the primary caregiver—than with her mother, who was living with Alzheimer’s disease.

Caregiving for Alzheimer’s disease is physically demanding, especially as the person advances, but it’s also incredibly emotionally demanding because the person you’ve known your whole life is still there, but most of the time, at least, they’re acting differently—sometimes in ways that are quite hard to take—and they can require, as someone progresses, 24/7 care. And unless you’re pretty well off, that care is typically done by family members. So, it is a non-stop demand emotionally, physically, your time. It’s just more than people are built to handle.

As a caregiver, there can be guilt, and there can be a lot of second-guessing of yourself. If someone you love breaks their leg, it’s pretty clear what you need to do. You can take an X-ray and you can see the leg is broken. But with Alzheimer’s, it’s all so gray, and it’s typically a roller coaster. If you look at scientific literature, they’ll show over decades a decline in cognitive functioning in this sort of really nice, smooth curve. But for people who live with Alzheimer’s, that curve is anything but smooth. It is an up-and-down thing. So, you think you’ve made the right decision with the person you love and are caring for today, and then tomorrow—or even later today—they may be acting in a way that makes you second-guess yourself.

There’s no clarity. You are constantly worried about whether you’re doing the right thing, whether this is what you would want. Then you have to think, “Maybe it’s not what I would want, but maybe it’s what they would want.” It is a really tough, tough thing.

What’s next for UsAgainstAlzheimer’s?

I mentioned that the first big problem this organization tackled was funding for Alzheimer’s disease research. That funding has steadily gone up year over year with incredible bipartisan support. But this year, funding to treat and cure Alzheimer’s disease is under attack for the first time ever.

So, a huge priority for us this year is to make sure that Congress and the executive branch understand just how important Alzheimer’s research is to America and to Americans who live with this disease. In our surveys, about half of Americans say that Alzheimer’s is in their family. We think this is a really important disease to be invested in, and we think the government needs to continue to do this research, not to back away.

The other thing that is important to us is implementing the good science that is out there—making sure that patients get the right kind of detection at their doctor’s office. If there are cognitive symptoms, we need to know what’s causing them. We’ve gone from, in my grandparents’ generation, not even talking about Alzheimer’s, and even doctors couldn’t really tell whether it was Alzheimer’s or something else, until somebody died [and got an autopsy].

In my father’s lifetime, we’ve moved into advanced imaging, with amyloid PET scans that allow people to look inside the brain and tell whether it’s Alzheimer’s disease. And now, we have blood tests that diagnose the disease and two drugs that are approved by the FDA that can, in the right patients, slow down the progression of the disease.

We still don’t have a cure, but we have made huge progress. But, it is slow going from bench to bedside in medicine, so we are focusing a lot this year on access to detection in the doctor’s office. Going from all this great innovation that’s happened in my lifetime into real practice for everybody across the country is a big hurdle. So, our focus this year is to drive theory into practice for all Americans, especially people who are disproportionately affected.