Why diagnosing Alzheimer’s today is so difficult—and how we can do better

When I announced that I was investing in Alzheimer’s research for the first time last fall, I thought I knew what to expect. I knew I would get to engage more deeply with the brilliant scientists and advocates working to stop Alzheimer’s—and I haven’t been disappointed. The things I’ve seen over the last seven months make me more hopeful than ever.

What I didn’t see coming was the amazing response I got from the Alzheimer’s community at large. Because my family didn’t talk publicly about my dad’s diagnosis before the announcement, I had yet to experience how remarkable the support community is. So many of you have shared your personal experiences with me, both in person and online (including here on TGN). It helps to hear from others who are going through the same thing.

Alzheimer’s research is a frontier where we can dramatically improve human life—both the lives of people who have the disease and their loved ones. I’m optimistic that we can substantially alter the course of Alzheimer’s if we make progress in several key areas. One of the biggest things we could do right now is develop a reliable, affordable, and accessible diagnostic.

The process of getting diagnosed with Alzheimer’s today is less than ideal. It starts with a cognitive test. If you don’t perform well, your doctor needs to rule out all other possible causes for memory loss, like stroke or a nutritional deficiency. Then your doctor can order a spinal tap or PET scan to confirm you have Alzheimer’s. Although these tests are fairly accurate, the only way to diagnose the disease definitively is through an autopsy after death.

There are two big problems with this process. First, it can be expensive and invasive. Most insurance plans in the United States won’t reimburse tests for Alzheimer’s. Patients often pay thousands of dollars out of their own pockets. Meanwhile, spinal taps can be scary and uncomfortable, and PET scans require the patient to stay perfectly still for up to 40 minutes. That’s difficult for anyone to do—but especially someone with Alzheimer’s.

Second, patients aren’t being tested for the disease until they start showing cognitive decline. The more we understand about Alzheimer’s, the clearer it becomes that the disease begins much earlier than we previously thought. Research suggests Alzheimer’s starts damaging the brain more than a decade before symptoms start showing. That’s probably when we need to start treating people to have the best shot at an effective drug.

This delay is a huge problem in the quest for a scientific breakthrough. It’s currently so difficult to find enough eligible patients for a clinical trial that it can take longer to enroll participants than to conduct the study. We need a better way of diagnosing Alzheimer’s—like a simple blood test or eye exam—before we’re able to slow the progression of the disease.  

It’s a bit of a chicken and egg problem. It’s hard to come up with a game changing new drug without a cheaper and less invasive way to diagnose patients earlier. But most people don’t want to find out if they have the disease earlier when there’s no way to treat it. The commercial market for Alzheimer’s diagnostics simply isn’t there. There’s promising research being done, but very few companies are looking at how to turn that research into a usable product.

That’s why my next investment in Alzheimer’s research is in a new fund called Diagnostics Accelerator. This project of the Alzheimer’s Drug Discovery Foundation (ADDF) aims to accelerate bold new ideas for earlier and better diagnosis of the disease. Today I’m joining Leonard Lauder, ADDF, the Dolby family, the Charles and Helen Schwab Foundation, and other donors in committing more than $30 million to help launch Diagnostics Accelerator.

Diagnostics Accelerator is a venture philanthropy vehicle, which means it’s different from most funds. Investments from governments or charitable organizations are fantastic at generating new ideas and cutting-edge research—but they’re not always great at creating usable products, since no one stands to make a profit at the end of the day. Venture capital, on the other end of the spectrum, is more likely to develop a test that will actually reach patients, but its financial model favors projects that will earn big returns for investors.

Venture philanthropy splits the difference. It incentivizes a bold, risk-taking approach to research with an end goal of a real product for real patients. If any of the projects backed by Diagnostics Accelerator succeed, our share of the financial windfall goes right back into the fund.

My hope is that this investment builds a bridge from academic research to a reliable, affordable, and accessible diagnostic. I expect to see lots of new players come to the table, who have innovative new ideas but might not have previously had the resources to explore them. If you think you’re one of these bold thinkers, we want to hear your great ideas. I encourage you to apply for funding on the new Diagnostics Accelerator website here.

Imagine a world where diagnosing Alzheimer’s disease is as simple as getting your blood tested during your annual physical. Research suggests that future isn’t that far off, and Diagnostics Accelerator moves us one step closer.