The Common, Treatable Disease Often Confused with Dementia

Cathy Barnhart is finally starting to enjoy her retirement, more than seven years after her career in health administration ended.

The North Bay, Ontario resident has been busy travelling to see her sons in Alberta and southern Ontario and planning a trip to Scotland with her husband.

At home, the 71-year-old has resumed long abandoned hobbies: researching her genealogy and playing the guitar.

A few years ago, all this seemed impossible. Climbing stairs exhausted Barnhart; she felt uneasy walking from her car into stores. Eventually, she stopped shopping almost altogether; what once had been enjoyable, now, inexplicably, was drudgery.

“I was just feeling unmotivated,” she said, reflecting on that time. “I was apathetic, like I wasn’t interested in anything.”

But Barnhart’s life began to change in January 2024 when she was diagnosed with idiopathic normal pressure hydrocephalus (iNPH).

Hydrocephalus occurs when excess fluid builds up in the brain, causing the ventricles to enlarge.

Anyone can be diagnosed with hydrocephalus at any time during their life. iNPH, however, is a distinct, age-related form typically diagnosed in adults over 60, with incidence rising sharply through the 70s and 80s.

Unlike secondary forms of normal pressure hydrocephalus, iNPH has no identifiable underlying cause. It is not the result of another condition, such as prior head injury or meningitis, that leads to fluid buildup in the brain.

iNPH is usually treated by surgically implanting a shunt in the brain that drains the excess fluid.

Barnhart had shunt surgery in December 2024. It has changed her life. Her energy has increased, and more importantly, her confidence.

She wonders how many people like her live with iNPH symptoms without realizing they have the condition — or that it can be treated.

“I just want them to know that it’s a possibility,” she said.

‘Very common’

Approximately one in 200 adults over 65 have normal pressure hydrocephalus, according to Hydrocephalus Canada. Often, the condition goes undiagnosed or misdiagnosed as a neurological disease, such as dementia.

“It is a very common condition, [it] is as common as Parkinson’s disease, and yet nobody talks about it,” said Dr. Alfonso Fasano, scientific director of the Surgical Program for Movement Disorders at Toronto Western Hospital.

“[Idiopathic normal pressure hydrocephalus] is becoming more and more common, because people live longer, and we know that age is the main risk factor.”

Yet despite this, many neurologists are not aware of the condition.

“[Idiopathic normal pressure hydrocephalus is] highly under-recognized, highly under-appreciated because there’s a lot of confusion when people talk about this group of patients,” said Dr. Mark Hamilton, director of the Adult Hydrocephalus Program at the University of Calgary.

People with untreated iNPH are more likely to die earlier. Treatments can dramatically improve patients’ lives, but must be done as soon as possible — if untreated, the condition can lead to irreversible brain damage.

iNPH has three main symptoms: incontinence or a sudden, strong urge to urinate; difficulty walking or with balance; and memory or cognitive challenges. Neurologists have to rule out many neurological diseases, such as Parkinson’s and Alzheimer’s as potential causes.

In iNPH patients, gait and bladder problems are present before memory difficulties, says Fasano. In dementia or Alzheimer’s, memory difficulties are not typically accompanied by gait problems.

An MRI is the best way to see if a patient has enlarged ventricles. But even then, other neurological conditions need to be ruled out, Fasano says.

‘Wet, wobbly, wonky’

Symptoms impact people differently.

Individuals with iNPH are often described as being “wet, wobbly and wonky,” said Barnhart. This was her experience for years.

It began in her final years of work with sudden, strong urges to urinate. At the time, she figured it was a regular part of aging. But then she started to feel more mentally overwhelmed at work.

“I just felt less able and more overwhelmed with work and family, not in a terrible way, but just enough that I felt something was different,” she said. She chalked it up to the stress of helping her recently widowed mother move to a retirement home.

“It’s not black-and-white,” she said of the difficulty of determining when her hydrocephalus symptoms began. “It’s [a] very slow and insidious type of progression.”

Difficulty walking was the final noticeable symptom. Barnhart had regularly exercised at a local gym for years, working with a personal trainer once a week. She could easily walk on a treadmill for nearly an hour and workout with weights multiple times a week.

She shortened her personal training appointments and treadmill walks. When she was at the gym, she felt self-conscious, shy.

“I was kind of embarrassed about how I was functioning,” she said.

In his work with adult hydrocephalus patients, Dr. Hamilton regularly meets people who struggle with loneliness because of changes to their mobility.

“As your walking speed starts to fall and your balance fails, you become isolated,” said Hamilton.

People have a hard time leaving their homes and may struggle if their home has stairs.

A shunt can help people regain not only their mobility but also their confidence and social life.

A shunt is a device consisting of a thin tube and a valve that is surgically implanted to drain cerebrospinal fluid (CSF) buildup from the brain to another location in the body, usually the abdomen.

In his practice in Toronto, Fasano has seen patients regain their ability to walk after shunt surgery. Others have seen drastic improvements in their memory.

“There are some cases like this that you think the patient has no way to recover, and yet they recover,” he said. “That speaks to the resilience of the brain.”

Lifelong care

While a shunt can help improve function and restore independence, it is not a cure for the disease. Living with hydrocephalus can have some challenges, and organizations like Hydrocephalus Canada can provide information about the disease as well as personal support.

Patients who have shunts need to have their shunts monitored to make sure they continue to work properly.

“Hydrocephalus is a chronic disease and requires lifelong care. So putting a shunt in somebody doesn’t mean you’re cured, it’s just a way to control the disease,” said Hamilton, who has worked exclusively with adult hydrocephalus patients for 15 years.

Patients can benefit from physiotherapy and occupational therapy after a shunt surgery, he says. They may require care from a range of medical professionals.

Hamilton has led research showing patients benefit from their shunts long after the surgery.

But that is only possible if patients get a proper diagnosis at the right time.

“If you wait too long, the treatment is not going to benefit the patient as much as we want,” said Fasano.

Barnhart agrees. She says patients should talk to their doctor if they have symptoms and make sure they get an MRI to see if their ventricles are enlarged.

The benefits of the shunt are obvious to her. More than 18 months after her surgery, she still sees signs of improvement. Her energy levels are increasing, as is her walking speed and the amount of time she can exercise.

She intentionally works to better her memory by reading more books, completing Sudokus and learning the names of new people she meets.

She needs to: now that her iNPH is treated, she no longer keeps her head down while at the gym. Instead, she looks people in the eye again.

And sometimes, Barnhart forgets the diagnosis and surgery ever happened.

“I feel that probably, most people, once they have their shunt, they will get on with their life, and that’s what I’m trying to do now.”

Disclaimer: The opinions expressed are those of the participating healthcare provider(s) and patient and do not constitute medical advice. This content is for informational purposes only. Please consult your healthcare provider regarding any medical questions or treatment decisions. 7464586-1-EN

This article originally appeared in Canadian Affairs.