Alzheimer's Prevention Initiative: Interview With Jessica Langbaum
The number of people living with Alzheimer's disease is expected to rise drastically over the next ten years. With so many people affected, it's important to educate the public on the signs of Alzheimer's -- and equally imperative to continue researching prevention and treatment of the disease. The Alzheimer's Prevention Initiative does just that. Principle Scientist Jessica Langbaum tells us more about the organization's important work.
What are some of the things that are at the top of your list in terms of educating people about Alzheimer's? Why?
Jessica Langbaum, principle scientist, Alzheimer's Prevention Initiative: Alzheimer's is not a normal part of the aging process. While it is normal to experience some decline in memory and thinking abilities as a person ages, Alzheimer's and other dementias are progressive diseases that worsen over time, eventually impacting a person's ability to carry out activities of daily life.
Second, there can still be hope and joy following a diagnosis of Alzheimer's. For instance, Banner Alzheimer's Institute's Family and Community Services program is committed to meeting caregivers' ever-changing needs to find success and joy in everyday living.
Lastly, thanks to the efforts of researchers and study volunteers, we now know that the disease process begins in a person's brain 10 to 20 years before the first signs and symptoms appear, providing another time to intervene.
What is the Alzheimer's Prevention Registry? And why is it important to Alzheimer's caregivers?
JL: The Alzheimer's Prevention Registry is an online community created to help overcome one of the biggest obstacles that researchers face: participation in clinical trials. The Registry connects interested members to research studies taking place in their communities. This is critically important, since scientific advances and our ability to one day prevent or cure this terrible disease are limited by our ability to identify people willing to step forward and participate in research. In fact, 80 percent of research studies are delayed because they are not able to meet their enrollment goals. Just like the people who volunteered to help create a vaccine for polio, we now need people of all ages, with and without memory and thinking problems, to participate in research and help eradicate this disease.
Joining the Registry is free, quick, and easy. It is open to anyone age 18 and older and only requires an e-mail address to begin the sign-up process. All of your information is kept completely confidential, and you are under no obligation to join a research study. The Registry is led by the Banner Alzheimer's Institute and is proud to have a number of leading organizations as partners.
The Alzheimer's Prevention Initiative (API) recently reached a milestone with some new research. What makes something a "milestone" and what types of discoveries do you hope to see with new research?
JL: In December 2013, the Alzheimer's Prevention Initiative announced that we began dosing participants enrolled in our first trial, being conducted in partnership with Genentech, the National Institutes of Health, and the University of Antioquia in Medellín, Colombia. This trial includes approximately 300 cognitively unimpaired people from a large extended family in Colombia who share a risk for a rare genetic mutation that typically triggers Alzheimer's symptoms around age 45. This was considered a significant milestone because of the many years of planning and infrastructure development that were required before enrollment could begin. Additionally, we believe this brings us one step closer to redefining Alzheimer's prevention research as we know it. While results from this particular trial are still several years away, the findings from it and other studies will provide the best answers yet to what researchers refer to as the "amyloid hypothesis" and will make an impact on drug development.
Alzheimer's disease stats and figures say there are currently 5 million Americans living with Alzheimer's disease, and that number will more than triple to 16 million by 2050. How does the Alzheimer's Prevention Registry work with families in the U.S. to slow down or prevent the number of Americans projected to get Alzheimer's?
JL: Several Alzheimer's prevention clinical trials and research studies are already underway, with more to come in the next few years. The types of studies vary from online surveys to drug clinical trials. But in order for researchers to help cure this disease, we need healthy people willing to step forward and take part in the study process. The Alzheimer's Prevention Registry was created to overcome this hurdle. The Registry keeps members up to date with the latest news and information about progress in prevention research, and as study opportunities become available in a member's community, they are notified via e-mail. Members are under no obligation to join a research study and their information is kept confidential. This approach has been extremely successful for breast cancer research; studies that would take months to years to enroll are now full in a matter of days to a week. Now it's the Alzheimer's community's turn to step forward and participate in research to help in the fight against the disease.
Is there anything else you'd like to tell us about the Alzheimer's Prevention Registry?
JL: We have an ambitious goal of enrolling 250,000 people into the Registry in order to find enough participants in prevention research studies across the U.S. Every person who joins can make an impact and bring us one step closer to ending Alzheimer's. The memories you save could be your own.
I am 89 years old. Have short term memory problems. My VA doctor has prescribed Aricept to see if it will help. If it helps would that mean that I do have Alzheimers dementia?
The clinical trials are very important and crucial to finding a cure for any disease. My husband has been battling Alzheimer's for twelve years now. I had to take him to Botswana where I can afford to take care of him at home. But it is isolated here. I only get information about progress on research on the internet. If we were still in the US, we would definitely join the trials. But we would be glad to help anyway we could from here.