Reflections on AAIC 2019: Community, Cause, and Challenges

On July 14-18, one of the largest Alzheimer’s conferences—the Alzheimer’s Association International Conference (AAIC)—took place at the Los Angeles Convention Center. I had the opportunity to attend the conference with my colleagues Jon and Julia, so I chose to go down to LA early Monday morning for the day. 

After I arrived at the convention center, I wandered through the exhibit hall. There, about a hundred diverse companies, non-profits, and other institutions had set up their booths. The diversity of the exhibition was fascinating. I saw biopharma companies, CROs, non-profits. Some focused on preclinical research, others clinical development. 

Despite these differences, all of these organizations were clearly working towards the same goal. As Maria Castillo, CSO of the Alzheimer’s Association, mentioned in one of the plenary sessions, “[Alzheimer’s] is not just a disease; it’s a cause.” 

And it’s easy to see why Alzheimer’s has become an entire cause. It is a degenerative brain disease that is poorly understood, has no effective treatment, and affects millions of people in the U.S. yearly [1]. Alzheimer’s not only leads to cognitive problems for patients; it also takes an emotional and financial toll on their families and caregivers. Ultimately, the inability to diagnose Alzheimer’s early poses huge challenges to everyone who is touched by the disease—Alzheimer’s patients, families and caregivers, and clinicians.

These challenges came to the forefront at a Genentech-sponsored lunch session called “It’s a Matter of Time: Understanding Timely and Appropriate Intervention for Patients with Early Alzheimer’s Disease.” It combined a panel discussion with clinicians and audience participation, all centered around a case study of an actual Alzheimer’s patient.

The main challenge that struck me is that family members often can’t detect signals of Alzheimer’s early enough. In fact, the brain changes underlying Alzheimer’s are thought to happen 20 or more years before symptoms appear—often remaining unnoticed until the symptoms (e.g. memory loss and language problems) become severe [1]. 

So how exactly would early identification and diagnosis benefit patients and their caregivers? For patients, it’s primarily clinical benefits. For families and caregivers, it’s the ability to cope and plan better for the future. 

I came away from that session with two major takeaways. First, I was able to see firsthand how complex Alzheimer’s is. The panelists not only raised concerns about the cognitive well-being of the patient, but they also stressed other significant hurdles: emotional, legal, and financial. Patients and their caregivers have a wide spectrum of reactions, from denial to depression. As patients decline from memory loss, they likely experience more stigmatization and discrimination. Insurance becomes an important issue as different questions arise, like who is managing the patient and how competent the patient is. While treating the patient is the utmost priority, we need to understand that Alzheimer’s impacts every part of a person’s life and to address all of those parts, both effectively and compassionately. 

The second takeaway is that community support is currently the best medicine, so to speak. One of the panelists mentioned that slowing down cognitive decline and finding treatments aren’t working now. So for the time being, the best ways we can care for patients are developing better screening methods and helping them and their caregivers navigate the myriad challenges. While this conclusion seems disheartening, I see it as motivating. It challenges the Alzheimer’s community—including us at Unlearn—to double our efforts to find effective, long-term therapies for patients.

I wanted to end this post with the last question from that session: “what gives you hope for the future of the Alzheimer’s patient?” The panelists gave a few answers. Having a broader understanding of dementia and investigating different mechanisms that cause the disease. Finding more lifestyle interventions. Looking more holistically at mental health. 

Those are great answers. What gives me hope personally is seeing the different stakeholders working together to tackle a challenging disease that currently has no cure. Patients and caregivers, researchers, and clinicians all want to find treatments that improve patients’ lives and reduce the costs of care. In the quest to find a cure, however, challenges still exist. In the next post, Jon will write about those challenges—specifically the gap between academic research and clinical development—and how we might overcome them.

Footnotes

Photo credit: Julia Coelho

1. For more facts and figures, please refer to: https://www.alz.org/media/Documents/alzheimers-facts-and-figures-2019-r.pdf

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