Patients and caregivers: Doctors are asking for your insights, experiences and concerns about this new generation of monoclonal antibody Alzheimer's drugs.
Last week I had the opportunity to be the guest speaker of Grand Rounds at the Memory and Aging Center at the University of California San Francisco. In the audience were doctors, scientists, and health care workers who specialize in neurology. I was told I was an unusual speaker for this regular UCSF event, given that usually, the featured guest is a scientist presenting their latest research.
Your stories are powerful. And thanks to all of the insights you have shared, I was able to tell the audience about patient and caregiver perspectives on Alzheimer’s they don’t always have access to: with early signs and symptoms, misdiagnoses, and what it means to truly live life with dementia.
After the talk, I spoke with a few of the neurologists, and interestingly, I got a glimpse of some of their biggest shared concerns right now: The landscape of Alzheimer’s treatment is undergoing a major evolution with the approval of two monoclonal antibody drugs — “anti-amyloid” Alzheimer’s drugs Aduhelm and Leqembi — so far.
One of the doctors asked me if I had any clues as to how they should be speaking to patients about this new world of Alzheimer’s drugs. It’s an important question, because there are still a lot of unknowns about these drugs, and further, not all patients have easy access to them. It got me thinking how great it would be to get more input from you, our community, so that we could create a report for doctors — driven by what questions you may have — about how they can be more helpful to patients.
So, we’ve designed a quick survey on “The New Alzheimer’s Drugs.” It should only take a few minutes of your time. If you could please take a moment to answer these questions, we will both publish what we learn from you, and we’ll create a guide for medical professionals highlighting patient concerns and questions. (We’ll share that with you, too!) Your information will always remain anonymous and private. Part of our mission is to elevate patient and caregiver insights. We believe that’s the only way to truly understand — and effectively treat — Alzheimer’s disease and other dementias.