Research on limbic-predominant age-related TDP-43 encephalopathy (LATE), a type of dementia that is distinct from but can mimic Alzheimer’s disease, is ramping up as signaled by a recent New York Times article. Compared to someone living with Alzheimer’s disease, a person diagnosed with LATE has more memory problems and trouble with their words but experiences a slower decline in thinking. People with LATE are also more likely to be over the age of 80. More patients want to discuss LATE with their neurologists and members of the general public are paying attention.
The article features interviews with several individuals diagnosed using preliminary criteria for LATE. These individuals report being initially confused about their symptoms and relieved to learn that they do not have Alzheimer’s disease but also feeling unsure about LATE and what it meant. They continue to seek answers about LATE and take part in activities that support their social, physical, and brain health. Their current plans notably include volunteering for the first clinical trial for LATE.
Clinical trials are vital pathways to understanding, treating, and preventing Alzheimer’s disease and related dementias (ADRD) such as LATE. Historically, individuals older than 85 years of age, especially those with multiple etiology dementia (MED) or more than one contributor of dementia, have been excluded from clinical trials. Research in these areas is expanding, however.
To successfully design and conduct clinical trials pertaining to LATE, the field requires establishing prospective cohorts that fully represent the diverse group of people living with LATE to test and develop novel LATE biomarkers. At UCI MIND, led by a collaborative team that includes Dr. Joshua Grill, Dr. Ali Ezzati, and the two of us, a critical step in this effort is underway. The Trial Ready Cohort for LATE will include work to validate LATE diagnostic criteria, develop LATE biomarkers, and understand older adults’ attitudes toward clinical trials. This work was made possible by funding from NIH, but the real key to making an impact for the field will be the enrollment of hundreds of additional research participants age 85 and older at UCI as well as at UC San Diego, USC, Oregon Health and Science University, and University of Washington. With the growing population of older adults living with cognitive problems, the work on LATE can’t start early enough.
