Hydrocephalus

Also called Water on the brain, Normal pressure hydrocephalus, NPH

Fluid building up in the brain. In older people, one of the few treatable causes of a dementia-like picture.

What it is

Hydrocephalus is a build-up of cerebrospinal fluid in the brain, either because too much is made, too little is absorbed, or the flow is blocked.

In babies and children it is usually congenital or follows meningitis or bleeding, and it is treated with a shunt that drains fluid away.

In older people there is a form called normal pressure hydrocephalus, and it deserves particular attention here. It causes a triad of walking difficulty, urinary incontinence and cognitive decline, and it is regularly diagnosed as dementia or general ageing. Unlike most dementias it is sometimes substantially reversible with a shunt.

Signs you might notice

In babies: a rapidly enlarging head, a bulging fontanelle, irritability, vomiting, sleepiness, downward-fixed eyes.

In children and adults with a shunt: headache, vomiting, drowsiness, visual change, personality change. These mean shunt malfunction and are an emergency.

In normal pressure hydrocephalus: a magnetic gait, feet seeming stuck to the floor, with small shuffling steps and a wide base, plus urinary urgency and slowed thinking. Walking is usually affected first, which is the useful clue.

How it can affect day-to-day life

Shunts fail. Around a third fail within the first year in children, and every person with a shunt and their family needs to know the warning signs cold and act on them rather than waiting.

For normal pressure hydrocephalus, the practical issue is getting it considered at all. Anybody with gait problems out of proportion to their cognitive problems deserves the question asked.

Living with a shunt affects contact sports, air travel and some scans, and people need clear written guidance rather than assumptions.

Supporting someone well

Learn shunt failure signs and treat them as urgent. Do not wait to see whether a headache settles.

Carry the shunt details, including the type and valve setting, since some are affected by magnets.

In an older person, if walking deteriorated before memory, say so to the clinician and ask whether normal pressure hydrocephalus has been considered.

Support the physical rehabilitation after shunt insertion. Improvement continues for months.

Fiducia Guardian holds device details, baseline function and the care team, which is exactly what an emergency department needs and does not have.

Where to get help

Shine provide support for people with hydrocephalus and spina bifida.

Suspected shunt malfunction is an emergency: go to A and E and say the person has a shunt.

For suspected normal pressure hydrocephalus, ask for a neurology or neurosurgery opinion, not just a memory clinic.