Five to 10 percent of Americans diagnosed with dementia could actually have a treatable condition known as normal pressure hydrocephalus or NPH, according to experts in the field.
An estimated 700,000 adults are living with NPH, a disorder involving the abnormal increase of cerebrospinal fluid that causes the brain cavities to become enlarged. The condition can occur at any age, but it’s most common among the elderly.
Despite the availability of surgical treatment options, fewer than 20 percent of people with NPH receive an appropriate diagnosis, reports the Hydrocephalus Association in Bethesda, Maryland, the largest private funder of hydrocephalus research in the nation.
“There are no cures for many types of dementia. But there are some treatable forms of dementia and normal pressure hydrocephalus is one of them,” says Ann Marie Flannery, a neurosurgeon at Women’s & Children’s Hospital in Lafayette, Louisiana.
Many people go undiagnosed and untreated because the symptoms of NPH can mimic Alzheimer’s disease, Parkinson’s disease and other neurological or spinal disorders that can occur in adults as they age, says Michael Williams, a neurologist and director of the Adult Hydrocephalus Center at the Sandra and Malcolm Berman Brain & Spine Institute at Sinai Hospital of Baltimore in Maryland.
Symptoms of NPH include gait or walking problems, dementia and urinary incontinence.
“These are the three most common problems in the elderly population,” Williams says. “So the real diagnostic challenge is figuring out if the symptoms are indeed coming from hydrocephalus, or [if they’re] being caused by a combination of other conditions.”
Numbers to Rise
Williams expects the number of people seeking treatment for NPH to increase in the coming years given the growing ranks of baby boomers turning 65.
“Baby boomers aren’t going to sit still and say ‘oh well’ when they develop symptoms,” he says. “They’re going to want to look for something that is treatable.”
Debbi Fields, executive director of the National Hydrocephalus Foundation in Lakewood, California, says she’s fielding more inquiries about NPH. Originally established to assist children with hydrocephalus, the foundation now offers education and support to people with various types of hydrocephalus, including adults with NPH.
“I think awareness about normal pressure hydrocephalus has grown in the last decade. I probably counsel more adults with NPH than parents of children who are diagnosed with hydrocephalus,” says Fields, who was born with a mild case of hydrocephalus.
Diagnosis is Key
There are many types of hydrocephalus, including NPH. The neurological condition occurs when the normal flow of cerebrospinal fluid throughout the brain and spinal cord is blocked. The blockage causes the fluid-filled brain ventricles to enlarge, sometimes with little or no increased intracranial pressure.
Early diagnosis and treatment are essential to improve a patient’s chance of a good recovery, says Williams, a renowned NPH expert. Doctors may use a variety of tests to diagnosis the disorder, including brain scans using computed tomography or magnetic resonance imaging to determine if excess fluid is present.
Patients whose brain scans show the presence of excess fluid undergo a spinal tap and a continuous lumbar drain test to temporarily remove some of the fluid.
“These tests help us understand in advance if a patient would benefit from a shunt operation,” Williams says. Patients who experience relief from their symptoms after a temporary removal of excess fluid are referred to a neurosurgeon.
Surgical Solutions
Treatment options for NPH involve the surgical placement of a shunt in the brain to drain the excess cerebrospinal fluid into the abdominal cavity via a catheter, Flannery says. The shunt system includes a programmable valve that controls the flow of the fluid.
The programmable valve can be adjusted on an outpatient basis, thereby eliminating the need for additional surgery to change the valve pressure. The process involves using a magnet “similar to a compass” to determine the valve’s current setting, says Flannery, who then uses a “stronger magnet” to rotate the value to the new setting.
While treatment with shunts is “not risk free,” Flannery notes, the procedure “can be very beneficial for select patients.”
Flannery encourages people who are experiencing dementia to seek the medical opinion of a neurologist or psychiatrist.
“People shouldn’t assume that all dementia is incurable Alzheimer’s and that their situation is hopeless,” says Flannery, a leading member of the joint guidelines committee of the American Association of Neurological Surgeons and Congress of Neurological Surgeons.
A Promising Future
Experts hope groundbreaking research through the Adult Hydrocephalus Clinical Research Network will lead to new diagnostic methods and better treatments for people with NPH. The network includes multiple clinical centers across the U.S. and Canada and a central center to coordinate data. The initiative was launched last year with a $500,000 startup grant from the Hydrocephalus Association.
The network marks the first time researchers will have access to a large pool of adults with hydrocephalus to conduct scientific studies, Williams says.
He believes the network has the potential to improve the quality of life of people with NPH while reducing health care costs. Research suggests treating hydrocephalus in the elderly population would reduce U.S. health care expenditures by an estimated $200 million over five years, according to the Hydrocephalus Association.
“There’s a widely held perception that the risks of treating patients are so high that it doesn’t make sense to evaluate patients for hydrocephalus,” Williams says. “But the literature in the past 15 years shows that if you conduct the right tests and select the right patients, the likelihood of benefit is quite high, and the risk of harm is quite low.”
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Is It Dementia or Normal Pressure Hydrocephalus? originally appeared on usnews.com
