This informational article is contributed by Lenore Jackson-Pope MSM, BSN, CCRP, Massachusetts Alzheimer’s Disease Research Center (MADRC), Mass General Brigham, an Honoring Choices MA Partner.
The Massachusetts Alzheimer’s Disease Research Center (MADRC) works from bench to bedside to develop novel therapies and to conduct cutting-edge research so that we may someday find more effective treatments for Alzheimer’s disease (AD) and related dementias. In addition to fighting AD and related dementias through research, MADRC provides education and resources to the community and to professionals. We provide awareness about what can be done to support those concerned about their memory. Our education efforts provide information to help patients and families obtain an earlier diagnosis, as we know that AD pathology begins 15-20 years before people develop symptoms. Research studies now target disease progression prior to the onset of symptoms of the disease.
We work to provide access to research for racially and ethnically diverse communities, so that we can improve equity in research. We know that Black and Latinx individuals are at greater risk for developing AD and related dementias and may experience disparities in access to health care and information about research. We aim to better understand the science of how AD and related dementias effect everyone living with this disease.
To achieve these goals, we offer free educational programs and resources. In 2020, we launched a virtual educational program to help patients and families navigate concerns about memory and thinking called the Aging and Memory Loss Road Map Education Series. This is a four-part program that offers free downloadable information on how to navigate the following:
- Are you or a loved one experiencing changes in memory and thinking? Click here for the Road Map to Dementia Diagnosis
- Are you interested in participating in memory research? Click here for the Road Map to Research Participation
- Are you caring for a person living with memory loss? Click here for the Road Map to Caregiving
- Are you thinking about how best to optimize your brain health? Click here for the Road Map to Prevention
MADRC at Mass General Brigham works across its campuses and collaborates with numerous research teams dedicated to conducting studies that will help us someday find a cure. There are several types of studies that complement the quest for answers: pilot studies to improve understanding of medications currently used in other disease states to determine effectiveness against AD; proof of concept studies looking at metabolic factors affecting disease progression; studies looking at how to better diagnosis and evaluate AD earlier with improved technology; brain imaging evaluations to determine how to improve treatments; and studies that combat dementia in other diseases like Lewy Body and Frontal Temporal Dementia.
These studies vary in requirements — some involve 1-2 visits, while others last several years. Each study provides valuable information that may help us change the course of these diseases. One of the biggest barriers in conducting research studies is recruiting people for participation from diverse backgrounds. We are looking for persons 50 years and older who are cognitively normal; have MCI or early AD. People with subjective memory concerns and those with a family history of AD are encouraged to contact us to learn more about research opportunities.
Alzheimer’s disease and related dementias can be difficult to diagnose and to treat. MADRC and Center for Alzheimer Research and Treatment (CART) offer resources to our clinical partners, as well as educational programming and consulting services. We want you to consider Massachusetts Alzheimer’s Disease Research Center (MADRC) as your home for information, education and access to research opportunities. For more information, please contact Nancy Coppelman ncoppelman@BWH.Harvard.edu