What’s in a Name? It Depends on Who’s Using It

What’s Alzheimer’s disease (AD)? A person off the street will probably describe a memory problem. A healthcare professional will likely say the same. In fact, AD is what happens at the microscopic level in the brain – unusual deposits of particular proteins that later kill the brain’s nerve cells. AD is a progressive brain disease. When a person has symptoms of AD, they are diagnosed with “dementia due to Alzheimer’s disease.”

To the lay public, this distinction between AD as a neurodegenerative disease and AD as a cause of dementia doesn’t seem to be a big deal. We just cut it short and call them both Alzheimer’s disease. But when a scientist cuts it short, a communication problem occurs. And it happens all the time.

This communications challenge isn’t limited to just AD. The other major forms of dementia – Lewy body dementias, frontotemporal degeneration, vascular dementia and mixed dementias – all suffer from the same issue.

Research is making enormous strides, like discovering new causes of dementia and detecting Alzheimer’s disease long before the symptoms of dementia appear. As the adage goes, with progress comes change. In recent years at national dementia conferences, dementia experts and advocates started calling for dementia terminology to be updated.

Communication isn’t the only problem. Some people find the term dementia stigmatizing. It conjures up images of a person with severe confusion or who is bedbound and in a nursing home. This simply isn’t reflective of the full spectrum of change. It usually takes years to reach the advanced stage. The term ‘demented’ is sometimes used by the public in negative, offensive ways. Even in technical discussions between researchers, it can be considered offensive to a person living with dementia. In some cultures, the term dementia is avoided entirely.

The Dementia Nomenclature Initiative was launched in 2019. Its goal is to take a fresh look at the terms we use to describe cognitive impairment, dementia and the neurodegenerative diseases that cause them. Led by Ronald C. Petersen, MD, PhD, director of the Mayo Clinic Alzheimer’s Disease Research Center and Angela Taylor, Senior Director of Research and Advocacy at the Lewy Body Dementia Association, this three-year initiative includes a steering committee and three working groups of nationally recognized thought leaders and advocates.

The Initiative will present its recommendations to the NAPA Advisory Council in 2022.