Reflecting on AD/ADRD advances during National Alzheimer’s Disease Awareness Month
According to the Centers for Disease Control and Prevention and World Health Organization, more than 6 million people in the United States and more than 50 million people worldwide have Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD). These diseases are devastating, both for individuals with AD/ADRD and for their families. Notably, dementia is not a normal part of aging. It is the result of complex changes in the brain that start years before symptoms appear and lead to the loss of brain cells and their connections. Based on the similarities in clinical symptoms and brain pathologies between these and pathological AD and/or clinical AD, ADRDs include: Frontotemporal degeneration (FTD), Lewy body dementia (LBD), Vascular contributions to cognitive impairment and dementia (VCID), and mixed/Multiple-Etiology Dementias (MED). To advance research that will lead to better ways to diagnose, treat, and prevent AD/ADRD, NINDS partners closely with the National Institute on Aging (NIA) who serve as the lead NIH Institute for Alzheimer’s disease research and for NIH’s response to the National Plan to Address Alzheimer’s Disease. As November is National Alzheimer’s Disease Awareness Month, I want to bring awareness to some of the promising NIH research and discoveries that may help people living with AD/ADRD and their families, and to share an opportunity with you to provide us with your input on the most important needs and promising opportunities for ADRD research.
Promising scientific breakthroughs advance our understanding of AD/ADRD
Dementia is caused by a combination of genetic, lifestyle, and environmental factors. Some of the most exciting recent scientific breakthroughs in understanding these complex causes involve genetic research. Scientists have identified more than 80 genetic regions relevant to AD/ADRD in the last decade, and they continue to learn more about which genes play a role and whether they increase risk or provide protection. This research will eventually help scientists identify new risk reduction and prevention strategies and therapies.
For instance, research supported in part by NINDS and NIA demonstrated that risk genes and disease mechanisms often overlap across neurodegenerative diseases. Recently, an NINDS- and NIA-funded brain mapping study found a new gene that may be associated with the vulnerability of some brain cells to Alzheimer’s disease. This study also showed that star-shaped brain cells called astrocytes may provide resilience to or resist the harm caused by the disease.
Still more studies focus on understanding gene variants that may protect against or delay the development of dementia. For example, recent NIA- and NINDS-supported research showed that even a single copy of a rare protective gene variant delayed the onset of Alzheimer’s in individuals genetically predisposed to developing the disease. Another NIA study demonstrated that one well-known Alzheimer’s gene is not a strong predictor of risk for those of African and American Indian ancestry–underscoring the need for diverse representation in clinical studies and the need to conduct new, rigorous research aimed at understanding population-based differences.
Individuals with dementia usually have complex, mixed pathologies in their brains. In the lab, positron emission tomography (PET) scans (medical imaging tests that use small amounts of radioactive tracers to produce detailed three-dimensional images of the brain and body) and spinal fluid tests (a procedure to collect cerebrospinal fluid for analyses) are helping researchers and doctors identify new biomarkers for dementia. Scientists are also developing new blood-based biomarkers that will enable precision diagnoses. A recent study supported by NIA and NINDS showed how a newly discovered biomarker detectable in blood and cerebrospinal fluid could help identify amyotrophic lateral sclerosis (ALS), FTD, and other neurodegenerative diseases before symptoms appear. Such biomarkers facilitate patient selection for clinical trials and help clinical trials measure therapeutic effects.
Continued progress in diagnosis and treatment
Scientists are also working to develop better tools for dementia diagnosis and cognitive assessment. Sensitive, affordable diagnostic techniques will help clinicians diagnose these conditions earlier and monitor disease stages. Dementia is often not diagnosed in primary care and is more prevalent among minority populations. New assessment approaches, in the clinic and at home, could help more people plan and access care and support services more quickly, and they may also help to expand clinical trials to more diverse populations.
This year, an NINDS-funded clinical trial found that integrating a 5-minute cognitive assessment (called the 5-Cog) with a clinical decision tool improved dementia diagnosis and care in Black and Hispanic older adults in primary care settings. Embedding the assessment and decision tool into electronic medical records improves dementia care in primary care settings, and it is a particularly significant success because early detection means patients get faster access to support services and critical healthcare planning. Researchers are also exploring novel ways to detect dementia and monitor cognitive health. For example, they’re using retinal scans of the eye, smartphone apps, and AI-driven methods to analyze electronic health records from real world populations, including racially diverse groups.
Our end goal is to develop new treatments for those living with AD/ADRD as well as new prevention strategies. Evidence for lifestyle interventions that may reduce the risk of dementia continues to grow. For instance, one clinical trial found that correcting hearing impairment with hearing aids reduced cognitive decline over 3 years in older adults at greater risk of dementia. Another clinical trial in people 50 years and older showed that lowering blood pressure reduced the risk of developing mild cognitive impairment, a hallmark risk factor for dementia, over five years of treatment. Our Mind Your Risks® public health campaign raises awareness of the connection between mid-life high blood pressure, stroke, and dementia, especially in Black/African American men, who are the population group at highest risk for both hypertension and dementia.
Looking to the future of AD/ADRD research
These advances are encouraging, but an urgent need for continued progress remains to better meet the needs of the millions of American families currently facing this disease. NIH holds regular summits to set and refine research priorities for AD, ADRD, and dementia care. Every three years, NINDS leads the ADRD Summit, where experts in the field meet to develop national research recommendations for ADRD and get public input on the recommendations, which ultimately become milestones in the National Plan to Address Alzheimer’s Disease. The next ADRD Summit will be held March 25-26, 2025. All who are interested are invited to provide suggestions on ADRD Summit recommendations via this NINDS Notice by December 6. The ADRD Summit is open for all to attend in person or online and will include significant portions dedicated to public comment on the updated draft research recommendations. By participating, you can play a critical role in shaping future research priorities.
I am proud as I reflect on the work we do at NINDS to address AD/ADRD and foster promising science to diagnose and ultimately treat AD/ADRD. And I’m confident we will continue to offer hope for those millions of lives and their loved ones who are touched by Alzheimer’s disease—this month and every month.