A man with dementia in his car

Driving and dementia: a difficult decision made easier

Driving and dementia can be a complex and emotive issue for all involved. Read about the reasons why, what the law says, and some new guidelines designed to help.

Driving is one of the most common topics that people contact Alzheimer’s Society for information, advice and support about. It’s easy to see why. There are growing numbers of older drivers, more people living with dementia, and increasing pressure on all services involved.

This blog outlines why driving is so emotive, as well as the complexities that dementia causes drivers and those helping them. When combined, these factors make dementia and driving a ‘perfect storm’. 

I will also tell you about some new guidelines which will fill an important gap in this space. For more practical advice on this topic check out our factsheet Driving and dementia, or our Living with dementia booklet Driving. Or call us on 0300 222 11 22.

Driving: so much more than A to B

It’s easy to assume that driving is just a means of transport. Big mistake. 

Clearly, driving can meet a very practical need, not least if you live in a rural area or somewhere with bad transport links. But driving is so much more than ‘A to B’ for those essential trips to the shops, doctors or the next Singing for the Brain® session. It can also be a way for people to access leisure and the countryside or to stay socially connected with friends and family.

'For many people being ‘a driver’ is just part of how they see themselves - driving gives them independence, status and self-esteem.'

So the threat of having your driving licence taken away can be hugely emotive for someone, with good reason.

We often hear from people with dementia that the decision is seen to be unfair, or the reason is poorly communicated. For some people, getting any decision at all takes too long, leaving them in limbo.

What does the law say about driving and dementia?

Context here matters. A dementia diagnosis does not automatically mean you’ll have to stop driving immediately. In fact, one in three people with dementia in its earlier stages still drive. But because dementia gets worse over time, there will come a point at which someone can no longer be on the road, for their own or other people’s safety. 

This progressive element is why anyone diagnosed with dementia must tell DVLA (or DVA in Northern Ireland) straightway, as well as their car insurance company. (‘Must’ as in that’s the law.) 

The decision as to whether someone with dementia can still hold a driving licence is formally made by DVLA. In practice, though, they rely heavily on information from the person’s GP or consultant. This is why when you tell DVLA about your diagnosis they will – with your agreement – often contact your doctor for a more detailed report.

Difficult decisions

This system pushes a lot of responsibility onto clinicians’ judgement. The decision itself is tricky: it’s not easy to tell from someone sitting opposite in a clinic how safely they can drive.

Safe driving relies on a complex interplay between different factors, including:

•    thinking (reasoning, decision-making, reaction times)
•    sensory perception (sight and hearing) 
•    manual skills (head-turning, braking)
•    emotions (ideally, no road rage). 

Memory test scores need to be factored into the decision, but are only part of this larger picture. 

Asking the person or someone close to them about their driving is also fraught with problems. Because of their dementia, the driver may lack insight into how it’s affecting their driving. And any partner – who may not themselves drive and so be reliant on the other to keep driving – may not be wholly unbiased.

Clinicians may be tempted to recommend their patient goes to an approved mobility centre. This is because a detailed on-road assessment is the most reliable measure of driving safety. But the approved mobility centres can get very busy and a long delay helps no-one. So this option should be used judiciously, when fitness to drive is really not clear.

A perfect storm? Help is at hand

So dementia and driving can become a perfect storm. The doctor has to inform DVLA about a decision that matters hugely to the person, yet can be difficult to make from the available evidence.

'The person may want (or need) to continue to drive and believe themselves safe, so the doctor risks damaging what might be a strong relationship.'

And all this sits in a system of rising demand with over-stretched resources. Not to mention busy professionals who at times don’t communicate promptly or sympathetically with people with dementia. Understandably the latter can get upset – who wouldn’t?

New guidelines out today help to resolve some of this. ‘Driving with dementia or mild cognitive impairment: Consensus Guidelines for Clinicians’ is the result of a new piece of work led by a group at Newcastle University. (I was on the panel, as were representatives from health and social care, driving organisations and people affected by dementia.) 

Driving with dementia or mild cognitive impairment

The new guidelines for clinicians provide a practical summary of what professionals need to know and do with regards to driving.

Read the guidelines

The new consensus guidelines are addressed to clinicians, but anyone can download and read them. They’re a clear, practical summary of what professionals need to know and do with regards to driving. By extension, the guidelines also show what people with dementia can expect of professionals when driving is being discussed. (The flow charts in particular are a real strength.)

Any work in this area must have the person with dementia back at its centre. For clinicians, it’s important that they act and communicate sensitively and transparently. People with dementia and those supporting them would also do well to look ahead. Even if they are able to keep driving for a year or more, the time will come when they have to give up their licence. Gradually using alternatives to the car, for example, may lessen the impact.

Stopping driving can then become part of advanced planning. This could make it that little bit easier -- a careful plan rather than an enforced bombshell.

Safe journey!

National Dementia Helpline
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8 comments

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Before I was diegnosd I had really bad things I would suddenly not know whet I was , at that point I couldn’t even my own name and where I even lived I could only remember an address,didn’t know if it was my address or not.
I asked directions from several people and got to the address wasn’t to seeing the house that’s when I knew where I was.
I then went through Alzheimer’s tests, and got positive for Alzheimer’s. I’ve got my drivers license up after I got my diagnoses and I still remember that moment and I’ve had others since but I think if I was driving on a motor way at 70 mph how many people could of killed or injured and life’s I could be ruined
And that’s why I gave up my licence I couldn’t say I’m a safe driver eany more and time to admit it.

Dear John

Thanks so much for your honesty in sharing your story. It must have taken a lot of courage to admit that you’re no longer safe on the road, but it sounds as if you made the right call.

Not everyone will need to do what you’ve done, especially in the earlier stages of dementia, but if you do make the decision to stop yourself (‘voluntary surrender’ of your licence) this is often a bit easier to take than being told to stop driving by DVLA.

Best wishes

Tim

I think you made a very brave decision John. Once you recognised that it was time to stop driving, you did this not just for yourself but for everyone else on the roads.
Have a lovely Christmas

My husband was diagnose with Dementia But will not admit he has anything wrong Wont go back to dr. Won’t take any medicine.

Thanks Jan for getting in touch.

We do hear a lot about situations like yours and I realise how hard it can be. There are some practical tips for this situation in our driving factsheet here:
www.alzheimers.org.uk/get-support/staying-independent/when-dvla-decides…

Your husband may lack insight or be in denial about his dementia. For advice on these wider issues you could call the National Dementia Helpline on 0300 222 11 22 to talk things through.

Best wishes of the season.

Tim

When I was diagnosed with early sage dementia, I decided to stop driving and sell my car.
However I found that my local council and county council offered driving tests for seniors, I am 74.
I applied and had a 2 hour test driving my own car. Passed with great comments. I advised my insurers and they were fine. My driving licence is now limited to 1 year and I intend, if all goes well to retake the test every year as long as I can , for my own peace of mind

My mum has just been diagnosed with early dementia and Alzeimers. she has been told to take a driving test in another car ( not her own) an in an area she is unfamiliar with. I think this is totally unfair. They say she has to drive one of their cars as they are dual control. Many able minded people would be nervous in a strange car in a strange place and I fear she may fail with nerves rather than her ability. If they take away her licence it will end her independence. Is this a legal requirement and can she refuse the test?

Hi Caroline, thank you for getting in touch. I'm sorry to hear about this, it must be stressful for your mum and yourself. I suggest giving our Helpline a call on 0300 222 11 22. One of our advisers will be able to provide answers to any questions you have about this.

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