Scientists have discovered that not all people who have been diagnosed with Alzheimer’s disease (AD) actually have Alzheimer’s because they have discovered a disease that mimics Alzheimer’s, but is not AD. The National Institute on Aging (NIA) issued guidelines April 30, 2019 for this newly found disease. The guidelines were from a workshop funded by the National Institute of Health (NIH). This workshop was headed by Dr. Nina Silverberg, the director of the Alzheimer’s Disease Centers Program at the NIA and Dr. Peter Nelson from the University of Kentucky at Lexington, who was the lead author of the guidelines. Participants in the workshop that was held October 17-18, 2018 in Atlanta, Georgia were scientists from the United States. Australia, Austria, Japan, Sweden and the United Kingdom. The guidelines had recommendations for both scientists and the public about this new found disease. The guidelines are a significant step for increasing awareness and promoting research for both Alzheimer’s and this disease that mimics Alzheimer’s.
Limbic-predominant Age-related TCP-43 Encephalopathy (LATE)
This newly discovered disease called Limbic-predominant Age-related TCP-43 Encephalopathy (LATE) does not have a buildup of beta amyloid plaque in the brain like Alzheimer’s. Unfortunately, only autopsies after a person has died can accurately diagnose these diseases. Finding a way to accurately diagnose whether a disease has Alzheimer’s, LATE or both will be a challenge for researchers to will need to find a simple way to diagnose these diseases while a person is still alive. Also, treatments and vaccines will have to be tailored for each disease. This could be one of the reasons why many Alzheimer’s treatments that are successful in the laboratory fail in human clinical trials because many of the people have LATE instead of Alzheimer’s disease.
Transactive Response DNA Binding Protein of 43 kDa (TDP-43)
Misfolding of transactive response DNA binding protein of 43 kDa (TDP-43) found in the brain has been previously linked with amyotrophic lateral sclerosis (ALS) commonly known as Lou Gehrig’s disease and frontotemporal lobar degeneration. While these are two relatively rare diseases, the misfolding of TDP-43 also is what leads to LATE. This misfolding of TDP-43 increases with age and is very commonly found in seniors. According to the NIA, about 25% of seniors over the age of 85 have enough misfolded TDP-43 to damage their memory and ability to think. This misfolding of TDP-43 can lead to the development of hippocampal sclerosis, which is severe shrinking of the hippocampal part of the brain that is associated with memory.
Newly Discovered Disease is not a New Disease
Discovery of the disease, which is not at all a new disease, but has been misdiagnosed as Alzheimer’s presents a real challenge for researchers. The guidelines refer to LATE as an under-recognized condition that has a very big influence on public health. In fact, the authors of the guidelines believe that the impact by LATE on public health is as big as Alzheimer’s. No doubt many of the people who enrolled in clinical trials for Alzheimer’s actually do not have it, and the researchers need to find a way to remove people from clinical trials for Alzheimer’s that have this other disease rather than Alzheimer’s.
Autopsies did not Show Buildup of Beta Amyloid
The researchers discovered this disease when autopsies of brain tissue from people who had been diagnosed with Alzheimer’s did not show a buildup of beta amyloid plaque in their brains, which is one of the hallmarks of Alzheimer’s disease. At present, no one knows exactly how many of the more than 5.7 million Americans that have been diagnosed with Alzheimer’s may actually have LATE.
Some People have both Alzheimer’s and LATE
As if this is not confusing enough, some people have both Alzheimer’s and LATE. While LATE by itself progresses much more slowly than Alzheimer’s into dementia, LATE together with Alzheimer’s speeds up the process to dementia.
Routine Autopsies Recommended for LATE
The researchers recommend routine autopsies for diagnosing LATE, developing biomarkers, carrying out more pathological research and generating new animal models for LATE. The researchers put stress on the need for people to be willing to donate brain tissue for research that will be taken after they die.
The NIA is Seeking People to Participate in Clinical Trials
According to Dr. Richard J. Hodes, M.D., director of the National Institute on Aging (NIA), the NIA needs people to enroll in clinical trials in the hope that research provided by human clinical trials will find a way to prevent, treat or even cure dementia. In fact, the NIA needs to get at least 270,000 people to enroll in about 200 clinical trials. Click here for more information about how to join a clinical trial that may succeed in finding a way to prevent, treat or cure Alzheimer’s disease.
If your loved one has dementia, the day may come when there is a need for long-term skilled nursing care. Choose a rehab that specializes in memory care for people suffering from dementia like the Royal Suites Healthcare and Rehabilitation in scenic Galloway Township, New Jersey. Royal Suites has a special memory care unit for people suffering from dementia. You can read more about memory care in our blog post from May 29, 2018.
We can only hope that more research and human clinical trials will provide a way to prevent, treat or cure dementias like Alzheimer’s disease and LATE.