Thousands of people suffering from a reversible brain condition may be languishing in care homes because they have been wrongly diagnosed with Alzheimer’s disease.

About 20,000 Britons are thought to have normal pressure hydrocephalus (NPH), a condition caused by fluid becoming trapped on the brain.

Richard Edwards, a consultant neurosurgeon from Bristol, said that doctors often mistake the illness for dementia, which has similar symptoms.

Dementia is usually caused by irreversible changes in the brain, but that triggered by NPH can be treated by surgery to drain the excess amount of cerebrospinal fluid (CSF) that builds up deep inside the brain.

Mr Edwards said some patients have experienced ‘jaw-dropping’ improvements after the procedure, yet misdiagnosis meant the £8,000 operation is being used far too infrequently.

“Patients who present with moderate to severe dementia can occasionally experience almost complete reversal of cognitive impairment after the operation. Some will have a jaw-dropping improvement in terms of mobility and cognitive impairment.” said Mr Edwards.

As well as memory loss and disorientation – symptoms also associated with dementia – NPH can cause a loss of balance and a slow, shuffling walk ‘as if your feet are stuck to the floor’. As a result, it is often spotted by podiatrists rather than GPs.

One of Mr Edwards’s patients was diagnosed with dementia but asked his GP about NPH when his wife searched his symptoms on the internet and found details of the condition. After treatment, he went from being almost unable to walk and frequently confused to striding around and regaining his former eloquence.

Mr Edwards said that results are usually more modest: ‘The majority will have an improvement in balance and mobility although improvement in cognitive function can be variable.’

Another common symptom of NPH is worsening bladder control, which is often mistaken for prostate problems. Surgery usually leads to an improvement.

Studies suggest that about 20,000 people could have NPH in the UK, making it a factor in up to five per cent of dementia cases. At present, between 300 and 400 sufferers undergo surgery each year, which involves inserting a special tube called a shunt into spaces in the middle of the brain where CSF has built up. This drains the excess liquid which is reabsorbed elsewhere in the body.

Mr Edwards said GPs commonly have insufficient knowledge of NPH to consider it as a possible diagnosis, meaning that vulnerable, elderly people whose lives could be transformed were instead being ‘sidelined and stuck in nursing homes’.

An NHS spokesman said: ‘NPH is an uncommon and poorly understood condition that most often affects people over the age of 60. It can sometimes develop after an injury or a stroke, but in most cases the cause is unknown.

‘Mobility problems, dementia and urinary incontinence are the main symptoms of NPH, but because they come on gradually and are similar to the symptoms of other, more common conditions, such as Alzheimer’s, it can be difficult to diagnose.’

Report by Stephen Adams – Health Correspondent, The Mail on Sunday

First published on 20th April 2019

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