James Ashwell reveals why many people with dementia continue to drive when they shouldn't, and spills the beans about the illegal measures relatives admit taking to keep loved ones – and others – safe on the roads.

Harry was a retired businessman who'd lived with dementia for seven years. Now in the mid stages, Harry often forgot that his wife had passed away and was growing increasingly confused and frail. After a nasty fall at home, he was rushed to hospital where staff were shocked to find car keys in his pocket. Harry, who lived alone, was still driving.

When a friend told me about Harry I was shocked but not surprised, because I know that people with dementia have been known to get behind the wheel when, perhaps, they shouldn't. Looking back, I know my mum should have stopped driving long before she did. I remember her driving on the wrong side of the road in 1997 when she picked me up from army camp, but she didn’t lose her licence for another six years.

What's the law?

There are many reasons why this can happen which are important to consider. The law itself requires anyone diagnosed with dementia to notify the DVLA immediately. But many don't. I’d suggest most don’t. Not because they are intent on breaking the law. The vast majority are law-abiding citizens who would be horrified at the suggestion they would deliberately break a law. But they’re in the early stages of the condition, and their driving isn't affected, so they don't feel it's necessary to notify anyone yet.

This is all part of the denial and the stigma of dementia. And besides, they could be right. A dementia diagnosis should never mean an automatic driving ban – some people continue to drive safely for years. But the trouble is, once the condition progresses to the point where driving skills might be impaired, the person with dementia often fails to recognise and accept it.

So if they don't report themselves to the DVLA, does the duty fall to others? A GP can and should inform the DVLA – and many do – if they have concerns, as can family and friends. However, if a professional doesn't take action (because he simply isn't aware), and relatives hesitate because they feel disloyal or are wary of the repercussions it could cause them personally, then a person with dementia may continue to get behind the wheel.

Whose responsibility is it?

In our case, Mum wasn’t conscious of driving badly. Her doctor didn’t think it was his responsibility, my siblings and I were at university and weren’t aware of it, and Dad hid it. Accepting his wife should no longer drive meant that he’d have to accept she had dementia – which was something he simply refused to do.

Of course, even if their licence is revoked, there's still no guarantee a person with dementia will stop driving. For some, getting into their car is such an ingrained behaviour that they may continue to drive simply because they forget that they shouldn't be doing it.

The danger

So how dangerous is this behaviour? Scientific studies suggest that neurodegenerative diseases such as dementia do impair driving ability and increase the risk of a crash, but by how much remains unclear. When GP and member of the BMA council Dr Peter Holden stated last year that allowing people with dementia to drive is, 'as dangerous as letting them out with a shotgun,' other experts were quick to accuse him of scaremongering.

However, Dr Holden also said that it's 'impossible to calculate' how many people with dementia are still on the roads, which is probably right. In fact, I’d say this is fast becoming a problem of epidemic proportion, but one that nobody dares speak about it.

Stories about accidents and crashes caused by a person with dementia are thankfully rare, but when they do occur they tend to make headline news. It's hardly surprising then that this becomes a fraught issue for many families. A quick glance at Alzheimer's Society forums shows how much anguish it can cause, with families employing increasingly desperate tactics to prevent their loved ones driving, from hiding or 'losing' car keys and removing the car battery, to arranging for a mechanic to disable the engine – some of which are illegal. But if the alternative is to allow a potentially dangerous driver onto the road it's easy to see why they do it.

Breaking the law

Ironically perhaps, motoring can continue to be hazardous for people with dementia even when they're no longer driving. For example, we had to find a dodgy mechanic to disable the front passenger door of our car so that Mum couldn't keep trying to open the door and get out – as she tried to on several heart-stopping occasions. I'm sure this wasn't legal, but it was the best solution we could find to prevent serious accident or injury, and I know many others take the same kind of action every day.

As a society facing a dementia epidemic the time for a full and frank debate about dementia’s dirty secrets has surely arrived.  Only then, when it’s out in the open, can we hope to stop thousands of people from breaking the law, either knowingly or not, and make our roads safer for everyone.

Watch this space… Unforgettable have recently found a seat belt disabler which ca n be used to prevent someone getting out of a moving car – we’ll be selling it soon.