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A Support Service for drivers with dementia.

I have heard it said, that for some people, the diagnosis of dementia is less distressing than the fear of having to stop driving.

When someone faces losing their driving licence, any amount of advice about alternative means of transport will not help much. Driving for many is more than just transport. It is part of an independent lifestyle, a passion, a familiar way to feel free and happy. There is an emotional connection between a driver and their car that is hard to understand from an outside point of view.

Driving is a long-learned process full of habits and muscle memory. We may not be able to drive on familiar roads with our eyes closed but we sometimes give it a good try! Most drivers recognise auto pilot, where they are completely acting on habits with very little conscious focus on the driving task.

This has much in common with driving with a cognitive impairment – that is, until something unexpected happens. At this point, we are normally quick to snap out of auto pilot and take evasive action but, with dementia, certainly in the more advanced stages, we may get a sudden burst of information overload and not be able to cope.

The advantage that many who have early stages of dementia have, is that they realise they are less able than they used to be and use a high degree of focus, stay on local roads and don’t drive particularly fast. This can change as the condition progresses and insight is lost.

So, we need is a service that any driver can readily access as soon as cognitive impairment is identified. This service needs to work with the driver, their family members and doctor so that when the time to stop driving happens, it is managed carefully – not too late but, also, not too early.

I mentioned in a previous blog that there was a great reluctance for drivers to apply to be assessed by the Driving Mobility organisation due to being expected to drive an unfamiliar car and on roads they don’t know. For a recap, Driving Mobility are an organisation affiliated with DVLA who use driver assessors as well as occupational therapists and who have a standard set of tests or assessments to carry out, some office based and some in a car on roads around their centre.

Although efforts are made to persuade drivers to go to one of these centres, they have been largely ineffectual efforts meaning that we either make it a compulsory, standard approach or have to look at alternatives that drivers are more likely to engage in.

However, there is a great reluctance for medical clinicians and others in the road safety industry for an alternative approach, possibly because they see that alternative as just ‘a run around the block with a driving instructor’, as it was once put to me in an advisory group for a national ‘older drivers’ report.

Indeed, I have faced some open hostility on my stance of wanting a better service for drivers who develop a cognitive impairment. There certainly seems to be no appetite to even discuss what could be achieved. Maybe this is partly due to a reputation that some driving instructors are not thorough enough. This was an early set back in the scheme I have been involved in where a rogue report, out of hundreds of good ones, reached the DVLA and was used to undermine the service that is helping so many people.

I learnt from these experiences and went on to close as many loopholes as possible, that gave ammunition for others to brush off the scheme as irrelevant. It really does require a well-trained and knowledgeable driving instructor if this approach is to be without criticism.

That training should include awareness of how to conduct a suitable practical driving assessment and how dementia can affect road risk. Assessments should also only be conducted with the full knowledge of a doctor, who should be sent a copy of the assessment report after the event.

Fitness to drive is a medical decision so this type of driving assessment should only explain what the driving is like so as to aid that decision. It should not be seen as a stand-alone assessment of fitness to hold a driving licence.

Before we go on, let me deal with some of the criticism which has come my way by those who have an interest in not wanting a service like this to operate. There are three main arguments:

1) An assessment by a driving professional without medical qualifications may miss important signs that the driver is not fit to carry on in all situations. I can’t argue with this, particularly with those assessors who are not trained on what to look for. However, many of these drivers restrict their driving to avoid difficult situations. Possibly only around 1 out of 10 drivers who develop dementia are assessed by the Driving Mobility Centres, so what about the other 9? Is it better to leave these people and their family members to struggle or to engage them in a system which, if structured in the right way, could greatly reduce the risk of collision whilst also smoothing the path for family members to act in the interests of safety?

2) An assessment only on familiar roads may not alert an assessor to what would happen if the driver was diverted away from those roads for some reason. It is relatively easy to identify which road types they are most likely to get diverted onto and build in an element to reflect this. For example, a driver, with family support, who lives many miles from a motorway is extremely unlikely to drive on that road type.

3) If a driver with cognitive impairment is asked by their doctor to go for an assessment at a Driving Mobility Centre and they can show that doctor a previous driving report from a driving instructor which can easily be interpreted as being a ‘good driver’, this can seriously undermine the doctor and assessors at the Driving Mobility Centre, making their jobs much more difficult. This is a situation I have faced in the past but have significantly decreased the likelihood of now by the way a drive is reported.

Over the last 14 years, our service has had a hand in helping many drivers, with a dementia, come to terms with the fact they will need to stop driving, either straight away or in the near future. By engaging in a regular assessment cycle with these drivers, the road to driving retirement can be managed carefully. Given the progressive nature of such a condition, it is not a matter of if they will have to stop driving, but when.

I can never be sure that the ones we didn’t get as far as stopping driving didn’t go on to have a serious collision, but we have no evidence to suggest this has happened. There is little evidence nationally to show that drivers with early stages dementia are a danger on the road.

Even if this was the case on very rare occasions, it doesn’t mean that we should stop helping the many others who do gain from the service, just as a young driver who passes a driving test only to be involved in a fatal collision a few days later doesn’t mean the test is not fit for purpose. It just means that we should improve our efforts to stop this from happening.

When a serious or fatal collision does occur, it is not usual for any medical issues to be made known, unless they come out in a Court case later on. Therefore, some see the headline grabbing collisions as part of a general problem with older drivers rather than a specific issue.

If this is the case, a standard scatter gun approach to offering driving assessments to older drivers is likely to be used, which, although very useful for raising awareness, is unlikely to have any affect in stopping these types of catastrophic collisions, such as driving down a motorway on the wrong side or careering across a crowded footpath due to prolonged pedal confusion, particularly if all those who have cognitive impairment are turned away from being assessed in this way. It is well known that most of those that volunteer for driving assessments already have a safe attitude to driving and probably have little to fear about losing their licence.

What we need is a system for those with dementia that encourages drivers or family members to engage in a carefully devised support service. Of course, this will not cover every scenario, but the key to success is the availability of a good family support network. Family support, particularly the support of a husband, wife or partner is extremely important in these cases.

The family member will be in a position to notice any changes in the driver’s competence and, with the regular help of external professionals, manage the situation to a degree. It is recommended that any family member who is too worried to sit in the car as a passenger, for example, should take stringent steps to stop their loved one driving at all. A well-trained driving assessor can help them with this.

At this point it may be useful to look at two fairly typical family situations. The following two scenarios are based on real situations I have dealt with but where the names have been changed.

Scenario one:

Mr and Mrs Brown lived in an area where there was no nearby access to faster, complicated road types. Mr Brown was diagnosed with early stages of Alzheimer’s and immediately notified DVLA. Being very safety conscious, he decided to restrict his driving to very local roads, mainly to enable him and his wife to get out of the house to do shopping, visit friends, visit the doctor, and go to the park where they would both take a stroll.

Because there was no convenient bus service near their location, they relied on the car to maintain some semblance of a normal life that they had been used to. Mrs Brown always sat with her husband on journeys and was keen that his driving was assessed every six months.

On each assessment Mr Brown drove very safely with no real concerns from our assessor. Whilst this situation continued, and Mr Brown retained good insight, we saw no reason to stop him driving. In other words, the whole situation was risk assessed as well as the actual driving.

Scenario two:

Mr White had always loved driving and, after being diagnosed with Alzheimer’s, he used driving as a way of retaining some dignity and enjoyment in his life. However, rather than restrict himself to local roads, he liked to drive further afield, sometimes making use of some complicated and higher speed road layouts. His family saw things, very occasionally, that raised their concern and managed to persuade him to take an assessment drive.

The assessment found no actual high-risk occurrences in Mr White’s driving but there were some issues which we saw, and which closely related to what the family had reported, that meant he may be vulnerable to a collision in certain situations. We assessed that these risk areas were likely to be due to a decrease in his ability to multi-task and a deficit in his spatial awareness.

In these cases, we have to listen to the family members who see the driver in far more situations than we do and compare that with what we have experienced. We also needed to look at the fact that Mr White was not likely to restrict his driving to very local roads and so his risk of getting into a situation he couldn’t handle was increased. He failed to recognise these problems himself and so we recommended that he didn’t drive anymore. We then worked with the family to ensure this happened.

So, in summary, I believe we have to decide whether we just leave the families of Mr Brown and Mr White to cope for themselves, until something dramatic happens to stop their loved one driving, or we encourage them to engage in a service which is there to guide them. In neither case were the drivers willing to travel many miles to get to an assessment centre only to be tested in a car they are not familiar with, and the current system has little way of accommodating this.

In the fourth, and final, blog in this series I will take a look at the situation from the point of view of the drivers and their family.

Graham Mylward


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