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Alliance Discussion with the Alzheimer’s Association: The Power of Advocacy in Addressing the Dementia Public Health Crisis

Research!America recently hosted a conversation about the importance and impact of advocacy with two extraordinary research champions, Dr. Joanne Pike, President and CEO of the Alzheimer’s Association, and Tony Gonzales, Alzheimer’s Association National Early-Stage Advisor. Dr. Pike and Mr. Gonzales discussed the Alzheimer’s Association’s work to address the dementia public health crisis, and what it takes to be an effective advocate. Here are some of their thoughts on: 

Recommendations for policymakers around strategies for addressing dementia:   

Dr. Pike: “You know, right now over six million Americans are living with Alzheimer’s, and there are over 11 million Americans who act as a caregiver. So, the scale of this is part of what makes this a public health crisis. Are we ready to deal with a growing aging population that will be dealing with this more and more over time? I think it’s also important to acknowledge that we have been making tremendous progress with our bipartisan congressional champions in Washington and lawmakers across the country, but we certainly have a lot more work that needs to be done. Since 2018, Congress has been investing in our nation’s Alzheimer’s public health infrastructure through BOLD (Building Our Largest Dementia infrastructure) Infrastructure for Alzheimer’s Act. This law is helping state and local public health departments implement Alzheimer’s interventions for everything from risk reduction to caregiving support, along with system-level change in diagnosis.” 

Mr. Gonzales: “When I first came to the [Alzheimer’s] Association one of the best things I was told was, “Tony, you’re an expert in your disease, your journey, and who you are.” I took that and decided I need to share my story. So, the first thing we need to do is listen to those experts, the ones living with the disease, the ones that know what they’re going through. Listen to their care partners, the ones that know what those need to allow them to live well within their communities. That’s what we’re asking for from a lot of these advocates.” 

Advice for research advocates who want to have a meaningful impact: 

Mr. Gonzales: “The first thing you really need to do is talk within your team. I always credit my wife for saving my life, but it was the communication with her, that she helped communicate with my family and friends. Beyond that, it’s my experience with my fellow advocates that have to learn how to be able to tell their story. They think that nobody wants to know. But when we tell our story, it makes it personal, and it makes it real. This is a real disease happening with real people and we have real solutions now.” 

Dr. Pike: “I think Tony said it best, it’s about telling your story. What we know at the Alzheimer’s Association is that every advocate, volunteer, our employees, they all have a story that drives them. People learn from that; policymakers certainly are listening to those stories. And then be relentless in your pursuit, keep sharing, always center yourself within that story, because it’s powerful.” 

Key things that the public should know about dementia: 

Dr. Pike: “There’s growing scientific evidence that there are things individuals can do to reduce their risk of dementia and improve brain health. For example, we know what’s good for your heart is good for your brain. The Alzheimer’s Association is funding and implementing a research study in five communities nationwide called U.S. POINTER. We’re looking at a clinical trial to evaluate whether lifestyle interventions that simultaneously target many of those risk factors that protect cognitive function in older adults can increase the chance of decreasing that risk for cognitive decline. Second, there’s still a significant amount of stigma associated with changes in cognition, and we need to break that cycle. The only way to do that is to address concerns proactively. So, if you or a loved one are experiencing memory changes, talking to a health care provider is incredibly important to make sure you’re building an evaluation process.” 

Recent advances in treatments for Alzheimer’s disease: 

Dr. Pike: “This has been an incredibly exciting couple of years in Alzheimer’s research, both for treatments and for diagnostics. The fact is, we now have treatments that target the disease versus only the symptoms. There are now two FDA approved Alzheimer’s treatments that change disease progression in people living with Alzheimer’s and a third is on the horizon. We are extremely optimistic about the future of Alzheimer’s treatments and care overall. This fall, CMS (Centers for Medicare & Medicaid Services) expanded coverage of amyloid PET scans, which is an important diagnostic tool. All the advances that we’re seeing in both treatments and diagnostics brings unprecedented levels of private and public investment into prevention, treatment, and ultimately cures.” 

The importance of clinical trials: 

Mr. Gonzales: “I’m so appreciative and so thankful for all of those in previous years that have been a part of trials. I’m in some great support groups put on by the Alzheimer’s Association, and in that group, I have some friends that did participate in trials. I saw the success that they had, I saw the brain fog start to disappear, and I saw them start to have hope again, which gave me an extreme amount of hope. Clinical trials are very limited, and we need to open those up even more. If you can be a part of a clinical trial, whether you have the disease or not, it’s extremely important and you’re doing something for somebody just like me.” 

Alzheimer’s Association 2024 priorities: 

Dr. Pike: “We need to keep the momentum going and, to do so, Congress needs to renew its commitment to addressing the Alzheimer’s crisis. As an immediate action, we have a couple of things on Capitol Hill that need to be looked at and passed. One of those is the National Alzheimer’s Project Act, the NAPA Reauthorization Act and the Alzheimer’s Accountability and Investment Act, both of which are set to expire very soon. The BOLD infrastructure, which is making tremendous impact in communities across the country is also set to expire. So, we’re working with bipartisan champions in Congress to ensure the commitment they made in passing the NAPA Act more than a decade ago continues. Of course, we continue to work with health systems and payers to ensure they’re covering these treatments as they receive approval and the diagnostic tools that go along with them.” 

Advice for family and caregivers who are starting out on this journey: 

Mr. Gonzales: “Have an extreme amount of patience. I always say to communicate and lead with love. But really, you need to reach out to people that can support you. Find your community, like the Alzheimer’s Association, your churches, that are going to help you live well. Also, it’s very important that you take care of yourself. When I first was diagnosed, I was 185 pounds heavier, I did not do brain activity exercises, I was not very good at taking care of myself. That’s changed, not just because of the disease, but because I learned that’s how I’m going to keep myself healthier, longer.” 

The Alzheimer’s Association is 2024 Advocacy Award recipient of the Paul G. Rogers Distinguished Organization Award, an award that honors any organization or institution that is widely recognized as a strong advocate for medical, public health or other health-related research in the U.S. Register for this year’s Advocacy Awards and learn more about the 2024 honorees. 

Watch the full discussion here.