Your questions about Alzheimer’s research, answered
A global collaborative research effort, which Lilly has been a part of for nearly 30 years, has been ongoing in the search for a way to slow, stop or prevent Alzheimer’s Disease and other types of dementia. Although it may seem like progress is happening slowly, clinical trials, even failed ones, have provided important information for researchers to learn about the disease and potential treatments. These advances would not be possible without clinical trial participants and their care partners.
Managing the emotional burden of dementia can be difficult and considering clinical trial participation may feel overwhelming. Here are some answers to common questions about Alzheimer’s and dementia clinical trials to support you through the learning curve.
Q: How do I talk with my doctor about finding a research study about memory loss or Alzheimer’s disease?
A: Alzheimer's disease and memory problems can start as early as 20 years before you have a symptom. Therefore, doctors are learning that we need to monitor patients early. They can assess early disease and, since they're aware of current research studies, hopefully refer you to research options, too. If your doctor doesn't have that information, clinical research websites can help you find options.
Q: Who can participate in a research study for memory loss or Alzheimer’s disease?
A: You don't necessarily need to have symptoms of memory loss or Alzheimer's disease to participate in a research study. Researchers are studying memory and Alzheimer's disease in all stages; even before symptoms appear.
Each research study has inclusion and exclusion criteria, which are also known as entry requirements. These requirements are specific to a study and can include things like medications you might be taking or medical conditions you might have. Many Alzheimer's research studies also have requirements for the level of memory loss or Alzheimer's stage being studied.
Something to understand is that you may need to stop taking certain medicines before being able to take part in a research study, although not all research studies require this. Additionally, taking medicine for memory loss or Alzheimer's disease doesn’t necessarily prevent you from participating in a research study.
Q: Why are researchers studying people who show signs of early memory loss or who are in the early stages of Alzheimer’s disease?
A: Focusing interventions and treatment early in the disease process is a basic principle of medicine. For example, screening and monitoring heart function has saved millions of lives and improved the quality of life for people with heart problems. Researchers are now applying these same ideas to memory loss and Alzheimer's disease.
Technology has made it possible to detect the signs that often lead to Alzheimer's earlier than ever before. Meanwhile, we are studying potential new Alzheimer's treatments to see if they can stop or slow the disease's progress rather than just treating the symptoms.
Q: What sorts of tests are involved in memory loss or Alzheimer’s disease research studies?
A: Because memory loss is a symptom that can be caused by many medical conditions, you may have a whole group of tests to make sure that memory loss is due to a brain problem.
These tests include lab tests, neurologic exams, physical exams, and imaging studies. An example of these imaging studies is an MRI, which can look at the anatomy of your brain to make sure you don't have strokes and other issues, as well as using positron-emission tomography (PET) scans, which give us an idea of whether you have an Alzheimer's process and whether you may have the proteins that are abnormal in this disease. Researchers will also give some memory tests to see where you are with your problem, and the researchers will monitor that throughout the study to see whether any of the interventions have made a difference for you.
You will receive information about the purpose of the research, the procedures, and the risks and will have the opportunity to have all of your questions answered about the study before you agree to participate. It is up to you and the research study doctor to decide together if participation is right for you.
Q: Would the researchers involve my family or partner in a research study for memory loss or Alzheimer’s disease?
A: The majority of studies with memory loss and Alzheimer's disease require a study partner because this type of research needs to include the observations of another person. These are diseases of our thinking and our concentration. We want to know how any intervention can change the way you think, and it’s helpful to get an observation from others who are intimately involved with your life. So the study partner functions as another source of important information. They also go through structured clinical interviews, where they are asked questions about how their partner is functioning.
Additionally, the study partner is there for support. The study partner is a person who can clarify medications and medical history if the participant can't remember all those details. They can also assist and bring people to appointments, remember their appointments, and act as a point of contact for the clinical research site if the participant is unavailable. Your study partner is a key part of the research study.