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Being a driver with dementia.

Fortunately, I have never yet had to go through the experience of a close family member having dementia, but I have dealt with many people who have a loved one who is determined to keep on driving despite the obvious effect on their driving ability, of a disease which can be very cruel.

Over the years, I have spoken directly to hundreds of drivers, as well as some of their doctors. I have also sat in the passenger seat to assess a driver with dementia ranging from very early stages through to a much more advanced staged. I have heard countless upsetting stories directly from family members who have been dealing with trying to keep their loved one safe without any help from anyone.

In all of this, there is one thing that stands out above anything else. There is no widely available and suitable service that exists which helps these people navigate a road to driver retirement in a dignified and managed way.

So, put yourself in the position of a driver who has just been diagnosed with Alzheimer’s. The news may have been partly expected but now the most immediate thought may well be about whether you can continue to drive and what the future holds.

A search on the internet will produce many guidelines, legal requirements, and pieces of advice but these are non-personal and often don’t do much to help your particular situation. Your main priority is to keep that one part of your life which gives you a sense of normality – driving. Your family is supporting you but all agree you need to follow the rules so DVLA are informed.

You then face a potentially long wait to hear whether you are allowed to keep driving. If you are, you will only get a one-year licence and, so, must repeat the process of a DVLA medical investigation every year, which can take nearly a year to complete in some instances. Forms are needed to be completed, DVLA are not easy to contact in very busy times and the whole situation can become very confusing even without the presence of Alzheimer’s.

I have known many drivers and their family members who are in a terrible state of uncertainty about what they can and can’t do. GPs can’t always help or can’t be contacted very easily. The family and driver often don’t know the rules around driving with an expired licence if DVLA are dragging their feet making a decision. In fact, unless they have been told not to drive by their doctor, they are allowed to continue until the medical enquiry is complete.

But, many drivers with dementia actually stop driving for many weeks unnecessarily whilst waiting and, by the time they start again, their skill levels have declined even though they have just been given the go ahead for another year! You see, driving with dementia requires the long learned processes, along with the muscle memory, to be regularly practised if safety is to be maintained.

If it was a straight forward decision that a diagnosis means you have to stop driving immediately, given that an extremely important part of driving is how well you process information, that would be easier in many ways. However, the reason that this is not the case is that giving up driving is a hugely stressful thing for anyone to experience and can lead to many other welfare problems. DVLA guidelines are that you may be able to carry on in the early stages but almost certainly not as the disease progresses. In other words, very open to opinion and uncertainty in the way this interpreted.

The problem with any official guidelines is that they must be fit for general purpose as well as legally be able to stand up in any court case. So, effectively, we have system of ‘buck passing’ where many are reluctant to make a decision in case they get it wrong. This means that any individual or organisation involved with helping older drivers is so fearful of any new suggestion which in any way deviates from the accepted way of doing things, that they don’t even entertain discussion on alternatives. So, we maintain the status quo even if it is not working very well.

For me, two things are certain. One is that the majority of drivers with dementia are left very much to fend for themselves in terms of whether to carry on driving or not. The other is that whilst we continue to hear about drivers, in advanced stages of dementia, travelling the wrong way down a dual carriageway or careering across a car park full of pedestrians at speed, due to pedal confusion, the headlines about ‘older drivers’ are not going to go away, no matter how much effort we put into the so called, albeit misleading, generalised ‘problem of older drivers’. We need to change this to ‘the problem of drivers with cognitive impairment and other medical conditions that may make them less safe’. This is not, by any means, all older drivers.

When someone develops dementia, the question should not be ‘Will I need to stop driving?’ but ‘When will I need to stop driving and how do I keep myself and others safe until that time comes?’ For this, we need a much more user-friendly service to be developed that can assist in risk assessing the whole situation, throughout the road to driver retirement, rather than how someone performs at a single assessment when they may be highly anxious and unsure, or how a GP sees the situation without any knowledge of the actual driving capabilities.

My long experience in this field would be, I’m sure, a very useful starting point but only if those in authority would be willing to discuss options in detail, rather than doggedly stick to a system which is, at best, clearly not ideal and, at worst, allows fatalities to continue to happen on our roads due to lack of action.

Graham Mylward


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