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• Contrary to popular belief, there are many different kinds of dementia, each with its own unique symptom list.
• One of the most common forms of dementia that surfaces in midlife is called frontotemporal dementia (FTD); this is the form that Bruce Willis was diagnosed with.
• In a new study published in Nature Aging, researchers used spinal tap fluid to identify potential new biomarkers for FTD, which could lead personalized treatments.

While most people lump dementia into one general group, the truth is that there are different forms of the disease, each with their own symptoms.

The most common form of dementia that surfaces in midlife (generally talking 40s and 50s here) is called frontotemporal dementia (or FTD), and it tends to get confused with depression, schizophrenia, or Parkinson’s disease before people are properly diagnosed.

While Bruce Willis’ diagnosis with frontotemporal dementia has put a spotlight on this form of the devastating disease, there still aren’t any reliable biomarkers to detect or even monitor the condition.

But now, new research has helped to pinpoint certain changes that happen in the body due to frontotemporal dementia, and the findings could eventually lead to diagnostic testing for the condition. Here’s what the study found, plus what neurologists want you to know about early-onset dementia.

Meet the experts: Rowan Saloner, PhD, is a study co-author and professor in the UC San Francisco Memory and Aging Center; Clifford Segil, DO, is a neurologist at Providence Saint John’s Health Center in Santa Monica, CA; Amit Sachdev, MD, is the medical director in the Department of Neurology at Michigan State University

What did the study find?

The study, which was published in the journal Nature Aging, analyzed more than 4,000 proteins in spinal tap fluid from 116 patients with frontotemporal dementia. The researchers compared those proteins to ones from 39 of the patients’ healthy relatives.

The researchers discovered that patients with frontotemporal dementia had changes in the proteins that suggest they have problems with RNA regulation, which is required for the correct gene expression in the brain. (Gene expression can impact how your brain works.) These patients also had certain changes that impacted connections in their brains.

These proteins could be the first markers for frontotemporal dementia that surface when people develop the disease, according to the researchers.

Why are these proteins so important?

There are a few reasons. First, “frontotemporal dementia can be caused by several very different types of brain pathology, making it very difficult to provide an accurate diagnosis to patients,” explains Rowan Saloner, PhD, study co-author and professor in the UC San Francisco Memory and Aging Center. “Right now, we have no way to tell which pathology someone has while they’re alive, especially in non-inherited cases, which make up the majority of frontotemporal dementia.”

But by IDing changes in spinal fluid protein, doctors can detect the disease and track its progression. “That will hopefully lead to more accurate diagnoses and personalized treatments,” Saloner says.

That’s crucial, given that this form of dementia tends to be missed early on, says Clifford Segil, DO, a neurologist at Providence Saint John’s Health Center in Santa Monica, CA. But genetic testing could help give patients and their doctors a better sense of what might be behind their symptoms, he says.

One thing to keep in mind: This study focused on people with an inherited or genetic form of frontotemporal dementia. “We do not know if genetic frontotemporal dementia and sporadic frontotemporal dementia just look the same in the end but have different paths to development,” says Amit Sachdev, MD, MS, is the medical director in the Department of Neurology at Michigan State University. “If they have different paths, then this study has helped us learn about genetic frontotemporal dementia. That is useful but not as broadly applicable.”

What else do we know about early-onset dementia?

Early-onset dementias like frontotemporal dementia usually impact people in their 40s or 50s, Saloner says. “They can be difficult to diagnose, as early symptoms are often misattributed to stress or psychiatric disorders,” he says. “Compared to Alzheimer’s disease, which now has biomarkers and FDA-approved treatments, frontotemporal dementia remains behind.”

Segil says that early-onset dementia should be considered “if someone loses the ability to talk or express themselves and other neurological conditions like a stroke, seizure, or infection have been ruled out.”

Ultimately, Sachdev says that more information is better with the disease. “It is important to know as much as possible about how these diseases arise,” he says. “It gives us something to work from in everyone else.”

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