The progressive brain disorder known as dementia remains one of the most mysterious disorders — researchers aren’t sure why some people get it, how to prevent it, or how to cure it. The Centers for Disease Control and Prevention defines dementia as a general term to describe “impaired ability to remember, think, or make decisions that interferes with doing everyday activities.” And, an estimated 5 million adults live with it. As a neurologist for more than 40 years, I have been dedicated my life to understanding and treating headaches including cognitive decline. While there is no cure for dementia, identifying it early rather than later can be helpful in terms of management. I want to share with you the best way to diagnose it: participating in dementia research studies. Read on to find out more — and to ensure your health and the health of others, don’t miss these Sure Signs You’ve Already Had COVID.
There are many reasons why people choose to participate in clinical research trials. For some, joining a research study provides the opportunity to gain access to investigational treatments. Others wish to contribute to the discovery of medical treatments that are not yet available in the hope of helping others suffering from similar conditions. Another less discussed but equally important benefit comes from the comprehensive assessments commonly performed during the course of a study. During the first study visit, both a thorough history and physical examination are performed. Extensive laboratory assessments examining liver and kidney function, electrolyte levels, diabetic profile testing, cholesterol testing, and hematological testing for anemia and bleeding disorders are also performed at no cost to the subject or their insurance carrier. Lab results are reviewed with each subject by their study physician and can be shared with the subject’s permission with their primary care physician to help guide any needed healthcare treatments.
Participating in a dementia study, of which Alzheimer’s disease is the most commonly studied condition, provides additional benefits beyond those listed above. For example, assessments performed during a dementia study can often identify the cause of cognitive impairment, including those that are potentially reversible with proper treatment. Early identification of a serious memory impairment condition also allows individuals the opportunity to receive the counseling and social services needed to help them live safely and independently for longer periods of time. Furthermore, since a main goal of dementia studies is the prevention of cognitive decline, dementia study assessments are not only useful in determining the severity of cognitive impairment, but also for monitoring for changes over time.
Some of the assessments commonly performed during Alzheimer’s studies include:
Memory Screening – There are several screening tests that are commonly used to evaluate memory. These screening tests are non-invasive and many take only 15-20 minutes to perform. While they are not able to provide a specific cause of memory impairment, they can help identify those individuals who may need to undergo further evaluation. Memory screenings can also be repeated intermittently to monitor for any changes in memory over time, and are used to monitor the effectiveness of treatment interventions targeting memory loss.
Depression screening – It is well established that psychiatric conditions can impair memory and concentration. In the elderly, depression and anxiety are not uncommon and can result in cognitive impairment. Dementia studies commonly include assessments for depression and anxiety.
PET Scans – More than 100 years ago, Dr. Alois Alzheimer discovered the presence of plaques and neurofibrillary tangles in the brains of those suffering from the progressive dementia disorder that now carries his name. By the mid-1980s the presence of a protein called p-tau was discovered in the neurofibrillary tangles while beta-amyloid protein was identified in the plaques. Despite the decades-old discovery of what are now known to be the two hallmark neuropathological signs of Alzheimer’s disease, until recently the only opportunity to discover their presence was at the time of autopsy. This changed with the use of Positron Emission Tomography (PET), which can now be used to identify these changes in brain anatomy. Using tracers that specifically bind to the p-tau and beta-amyloid proteins, PET scans can identify the presence of these pathological changes even before the onset of dementia symptoms. While PET results are not by themselves diagnostic for Alzheimer’s disease, the absence of these changes can rule out its presence. Additionally, research has shown that PET scan findings can improve the certainty of the dementia diagnosis, change dementia treatment, and provide families the opportunity for counseling regarding safety and future planning.
MRI – Magnetic resonance imaging or MRIs have been used to visualize the brain for decades and can be a valuable tool in the evaluation of dementia. MRIs can help identify causes of dementia other than Alzheimer’s, for example vascular disease, tumor, or strokes. It can also help distinguish Alzheimer’s changes from other less common types of dementias caused by neurodegeneration.
Blood Laboratories – There are many causes of dementia beyond Alzheimer’s disease, some of which are reversible. Blood work can help identify or rule out some of these causes. Some of the tests routinely performed during dementia studies to assess for these potentially reversible causes of cognitive impairment include:
- Vitamin B12 and folate levels
- Thyroid function
- Metabolic panel including blood glucose, serum electrolytes, kidney and liver functioning
Plasma p-Tau – Both PET scans and spinal fluid protein analysis can demonstrate the presence of the abnormal proteins associated with Alzheimer’s. Recent research has found that blood sample analysis can predict the presence of both amyloid and p-tau protein deposits in the brain. Many Alzheimer’s studies assess for plasma p-tau and some are using this test as a screening marker to identify those who may be at increased risk for the development of this disease.
Apo E testing – While those with a parent or sibling suffering from Alzheimer’s may be at increased risk for the development of this disease, the exact genetic cause for the majority of cases is unknown. In late-onset Alzheimer’s, which represents greater than 90% of all cases, there is evidence that genetic variants of apolipoprotein (Apo) E, a protein involved in cholesterol metabolism, can either increase or decrease the risk for Alzheimer’s development depending upon which variant is inherited. Some Alzheimer’s studies, especially those focused on prevention or early intervention, will test for this genetic marker. Study sponsors may share this information and provide genetic counseling to study subjects participating in these trials.
Dementia research is critical to the discovery of medical treatments that can slow down or even stop the progression of diseases like Alzheimer’s, and individuals who participate in a dementia research trial contribute greatly to these advancements. Participation in a dementia study also provides study participants access to emerging treatments that may provide benefit if proven effective. Information regarding ongoing privately and publicly funded dementia research trials and the location of research centers performing these studies can be found at ClinicalTrials.gov. And to protect your life and the lives of others, don’t visit any of these 35 Places You’re Most Likely to Catch COVID.
Dr. Egilius LH Spierings, a neurologist and Medical Director at MedVadis Research in Boston.
Egilius LH Spierings, MD, Ph.D.
Dr. Spierings is a physician, former clinical professor, and founder of MedVadis Research, based just outside Boston, Massachusetts. Read more