Researchers at Cedars-Sinai have found that some people diagnosed with a serious type of dementia may actually have a condition that can be treated. The disease, called behavioral-variant frontotemporal dementia (bvFTD), affects how people behave and makes it hard for them to do daily activities.
However, this new study suggests that some patients may not have true dementia but instead a problem caused by a leak of cerebrospinal fluid (CSF).
CSF is a clear liquid that surrounds and protects the brain and spinal cord. If this fluid leaks out, the brain can start to sink or “sag,” leading to memory problems, personality changes, and trouble making decisions. Because these symptoms are similar to those of bvFTD, doctors may misdiagnose patients, not realizing that their condition could be reversed.
The study found that many people with brain sagging due to a CSF leak go undiagnosed. This means they might be living with symptoms that could actually be treated. The researchers say doctors should look more closely at certain warning signs.
If a patient has strong headaches that improve when lying down, feels extremely tired even after a full night’s sleep, or has been diagnosed with a Chiari brain malformation, they might have a CSF leak rather than dementia.
Even if doctors find signs of brain sagging, pinpointing the exact spot where the fluid is leaking can be tricky. Sometimes, the leak happens when fluid escapes through a small tear or cyst in the protective layer around the brain and spine. These leaks can often be spotted with a CT scan using a special dye that makes the fluid visible.
However, the researchers discovered another type of leak, called a CSF-venous fistula, where the fluid drains into a vein instead of leaking through a tear. This kind of leak is much harder to detect with standard scans.
To find these hidden leaks, the team used a special CT scan that tracks the movement of the dye in real-time. They studied 21 patients with brain sagging and symptoms of bvFTD. In nine of them, they found CSF-venous fistulas.
All nine patients had surgery to close their leaks, and their brain sagging disappeared. More importantly, their dementia-like symptoms were completely reversed. This means their condition wasn’t actually dementia but was caused by the fluid leak.
The remaining 12 patients in the study, whose leaks could not be located, were treated with other methods, such as adding extra fluid to the brain. However, only three of them improved.
This research brings hope to people diagnosed with bvFTD who might actually have a treatable condition. If doctors check for telltale symptoms and use better imaging techniques, they might be able to help more patients regain their normal brain function.
The study, led by Dr. Wouter Schievink, was published in Alzheimer’s & Dementia: Translational Research and Clinical Interventions.
If you care about dementia, please read studies about dietary strategies to ward off dementia, and how omega-3 fatty acids fuel your mind.
For more health information, please see recent studies about Choline deficiency linked to Alzheimer’s disease, and what to eat (and avoid) for dementia prevention.
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