Driving and dementia is such an important and much-asked topic. Does a diagnosis of dementia mean one needs to retire from driving? Which symptoms are more likely to make one stop driving? And can we still drive if we have MCI?
Let’s find out.
Driving is an integral part of our everyday lives with many of us not giving it a second thought. However, during ageing driving is becoming increasingly harder. Most healthy older people stay safe drivers until at least the age of 75. But after 75, data is very clear that older people drive fewer miles/kilometres while having more traffic incidents than any other age group. Even more concerning is that the number of death by traffic incidents is the highest for older people across all age groups.
I can hear already the protest, ‘Well that cannot be true, I have been a safe driver for the last 50 years and never had an accident’. Good for you, but police and insurance data is clear that older drivers (75 plus) cause the highest rates of accidents. Those accidents are mostly not related to speeding but to slowed reaction times and decision. Hence, one of the most common accidents for older drivers is caused at junctions when the driver has to turn through oncoming traffic (right turns in the UK; left turns in most other countries). Despite having decades of driving experience, changes to physical health and potential cognitive changes have been shown to contribute to a higher risk of driving incidents.
Let’s start with physical problems. The main problems affecting driving when we age are problems with our joints and our vision. In particular conditions such as arthritis make it harder to turn out head or react quickly, which clearly increases the risk for potential driving incidents as we cannot, for example, look over our shoulder to check if there is a car coming or beside us. Similarly, our slowed reactions make it more likely to have an incident if the car in front of us is breaking suddenly or there is a sudden obstacle on the road. Similarly, vision problems, such as cataracts and macular degeneration affect our ability to drive, since having problems seeing what is happening around us makes it more likely that we will have a potential accident. Just imagine having a blind spot (cataracts) or losing a whole field of vision (macular degeneration) while driving on the motorway/freeway.
Such physical and vision problems are well known to affect driving and are, therefore routinely screened in many countries in ageing drivers. However, what is less known is how our cognition affects our ability to drive. This becomes, in particular, relevant when we develop dementia. Most of us will know that dementia affects our memory, but fewer people might know that dementia can also affect many other cognitive functions, such as our visuospatial abilities, spatial orientation and decision making, which are all highly relevant for driving. These cognitive changes determine a lot of whether we are allowed to drive when we have dementia.
So, what are the current rules for dementia and driving?
Dementia – driving rules
In short, the rules vary across countries, with some countries not allowing people with dementia to continue driving at all, while others review people with dementia on a regular basis and finally others who do virtually no checks. Let’s take the UK as an example. When we receive a diagnosis of dementia in the UK, we MUST inform the driving license issuing authority (DVLA) of our diagnosis. The DVLA will contact our doctor for more medical information on our diagnosis. They will then review our case and based on that might request a driving assessment or tell us that must stop driving. At the same time, a person with dementia must inform their insurance as their car insurance might become ineligible if they do not inform the insurance and then have an accident. The driving assessment is usually done by an authorised company or charity which assess the person’s ability to drive during a real-world driving test. Very similarly systems exist in most European countries and North America.
So much about the regulation and it makes clear that for most countries the burden lies on the person with dementia to notify the car driving license issuing authority and their insurance. However, what if the person with dementia does not want to make people aware of their diagnosis since they fear that their driving license might be taken away? This is in fact, a very common scenario, in my experience. Many people rely on their cars to remain as independent as possible. Having a driving license and a car means more freedom as we are not bound as much by our physical health or public transport links. This is particularly relevant for older people who live more remotely with scarce access to public transport. Not to speak of the potential social interaction, as we cannot just go by car to see a friend, go to church or attend a social event. Social isolation is clearly a big topic in ageing and becomes worse when people with dementia. Now, this might not be a problem if we have a partner who can still drive but for people who live alone or where the partner has driven very little, it becomes a very challenging situation, if we are asked to ‘surrender’ our driving license. It should come, therefore, not as a surprise that many people with dementia continue driving for longer than they should.
So, what makes people stop driving?
Stopping to drive
Research has indicated that only an official driving assessment will make most people with dementia stop driving. By contrast, family urging us to stop or our doctor telling us to stop or even ‘near miss’ events cause a much smaller percentage of people with dementia to retire from driving. The exact reasons why that is, are still being explored, however, one factor that has emerged as critical is the insight into people’s own driving behaviour.
There is the old joke that 80% of people say they drive better than the average person. Clearly, that cannot be true, as 50% of people will be average drivers, but we all seem to have an ‘inflated’ perception of our own driving skills and the problem seems to be always more those other ‘pesky’ drivers. The same applies to people with dementia. Research has borne this out with studies showing that the perception of the people with dementia and their carers can differ widely with carers often reporting unsafe driving or getting lost while driving. By contrast, people with dementia do not report such incidents or think their driving is completely safe. This difference in perception between a person with dementia and their carer has also implications for doctors determining fitness to drive in a person with dementia. If the doctor would only ask the person with dementia about their driving safety then they would likely report no problems at all but asking the carer independently might reveal a whole host of issues. It is an important point for clinicians to take away, always to check for driving ability with the carer, no matter how confident the person with dementia appears.
So, how does dementia actually affect our ability to drive?
As mentioned before, when people think of cognitive symptoms in dementia, they mostly assume that this is about memory symptoms and of course the majority of people with dementia will have memory symptoms but memory symptoms are not as relevant for driving. Instead, the following symptoms which are also very common in dementia, are far more relevant for driving in dementia:
• Loss of focus and attention – can lead to making it harder to focus on the complexity of the traffic around oneself
• Visuospatial symptoms – can lead to being less ‘aware’ of the right speed, distance or one’s position on the road
• Judgement and decision-making symptoms – make it harder to understand and prepare for the actions of oneself and other road users
• Spatial orientation symptoms – to lose one’s bearings or even getting lost
Despite these symptoms being less known they are actually very common in people with dementia. Of course, for most people with dementia, these symptoms remain fairly mild at the beginning of the disease and hence most people with mild dementia can continue to drive for quite some time. However, once the disease progresses the symptoms usually get worse and there needs to be a decision point when to stop driving. The difficulty is to determine when to stop driving as the progression of the disease can be highly variable between individuals. Some people might, therefore, stop driving earlier while other can continue driving for longer. On average, for most people with dementia the cognitive symptoms in the middle stages of the disease makes it very difficult to remain safe drivers.
There is also a difference between different types of dementia. For example, people with Posterior Cortical Atrophy (see also my article on PCA here) having vision problems, which makes it harder to stay a safer driver right from the beginning of the disease. People with Dementia with Lewy Bodies are having often vivid hallucinations which can impact their driving as they might see things on the road which are not there and react accordingly. Finally, people with frontotemporal dementia can be more impulsive and often have changed decision making which again impairs their driving safety.
In the end, it is a highly individual and difficult decision when to retire from driving, which each person with dementia with help of their family or doctor should make. It can make for some fairly uncomfortable conversations but as so often it is better to have these conversations early to plan ahead, which reduces then the stress on everybody when the time comes when driving is not safe anymore. If unsure, many people also undergo voluntarily an independent driving assessment, to check if they are still safe driving and it is good to get somebody independent to review oness’ driving. In my experience, these driving assessments are not meant to catch people out, instead they are highly supportive and want people to remain driving, if it is safe to do so.
But what about a situation where a person with dementia completely refuses to stop driving?
Refusal to stop driving
Unfortunately, these situations are not that uncommon, with research showing that up to 30% of people with dementia continue driving, after being told not to drive. That is clearly an issue. Thankfully most of those people stop finally driving once they get a strong ‘talking to’ from the family and their doctor. But for some people that is still not enough and can it make it a very distressing experience for anyone involved, the person with dementia, the family and even their doctor. To the person with dementia, it is clearly distressing as it appears to them that everyone is trying to curtail their freedom and independence. To the family, it is distressing since they are worried about the person with dementia staying safe but also worried about other road users getting potentially injured. Even to doctors, these situations can be quite distressing, since they have to inform the authorities if they know that the person with dementia is continuing to drive.
Frankly, no one wants to have this situation but it is quite a common scenario for many families. So, what can you do?
Most ‘solutions’ involve some form of deception, which in itself is quite distressing to the families. For example, families are advised to hide the car keys in places that are not easy to reach for the person with dementia. Sometimes also moving the car out of sight (in the garage or around the corner) might not remind the person with dementia to take a drive. Then there are more drastic solutions, for example, one can install a wheel or steering wheel lock that doesn’t allow the car to drive. Other families sell the car or disable it in some other way. I still remember a family where the sons removed the spark plugs from the car so that it doesn’t start anymore.
Clearly, none of these ‘solutions’ are ideal but sometimes they are the last resort for families is to keep the person with dementia and other road users safe. If you can, then such situations should not emerge in the first place and ideally one has a frank conversation at the beginning of the disease about what to do but of course, that is sometimes not possible.
How can you stay safe driving when having mild dementia?
How to stay safe driving
There are a few tips on how can stay a safer driver when having mild dementia. Most of these tips are to reduce how the cognitive symptoms can affect our driving. Some top tips are:
• Don’t go for long periods without driving – to keep your driving skills and stay confident
• Keep to short and familiar routes – you are less likely to get disorientated or even lost.
• Drive at quieter times, not the rush hour – avoids stress and distraction in heavy traffic
• Drive in daylight – with good road and weather conditions
• Drive without distractions, like the radio – for better focus
• Only drive when they feel fully awake and well
Of course, these are only some tips and you might want to explore other factors that you know make you less confident in your driving, which is always a sign that maybe one should avoid those.
What about MCI and driving?
Mild Cognitive Impairment
MCI (Mild Cognitive Impairment) is considered to be the earliest stage for people developing dementia. However, many people with MCI never develop dementia and their milder cognitive symptoms are caused by other factors, such as mental health conditions or medication. Still, people with MCI have similar cognitive symptoms to dementia, albeit to a milder degree and it usually does not affect their everyday life.
For now, it is less clear how MCI affects driving as the cognitive symptoms in MCI can be quite variable and subtle. But similar to dementia people with MCI should report this condition to the license issuing authority who will make then a decision whether a driving assessment is required. Most people with MCI will pass this assessment and can still continue driving. The other positive is that potential driving training can improve the road safety of someone with MCI. Studies coming out of Japan show that driver training for people with MCI can reduce road incidents and overall increase road safety. This is something that needs to be further investigated in future research but could develop into a potential training programme for people with MCI.
In summary, receiving a diagnosis of dementia does not mean we have to retire from driving straight away. But we must inform our license issuing authority and insurance of our diagnosis. Based on our clinical information, we might also have to undergo a driving assessment. Saying that, the research is clear that most people with mild dementia can continue driving until they reach the moderate stages of the disease. At the moderate disease stages, our increasing cognitive symptoms will make it harder to stay safe driving, as driving requires many of those cognitive functions. It is, therefore, important, to have an early and frank conversation on how to deal with ‘surrendering’ our driving license, as it can cause great distress to everyone if a person with dementia refuses to retire from driving. The effect of Mild Cognitive Impairment on driving has been less explored but most people with MCI will be able to continue driving, except they have specific cognitive symptoms, which make their driving less safe. There is also ongoing research happening on how to keep people with MCI and dementia safer for longer on the road.
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