Sarah’s story – “Dementia UK was our saving grace”
Sarah reflects on reaching crisis point when her husband, David, was diagnosed with young onset dementia and the support her family have since received from Dementia UK.
For many people, driving is an important source of independence and enjoyment, so it is natural to worry that developing dementia will result in having to stop driving.
A diagnosis does not necessarily mean that someone has to stop driving immediately; however, dementia often impacts the skills involved in driving. The DVLA, or DVA in Northern Ireland, will decide whether a person with dementia can continue to drive.
On this page, our dementia specialist Admiral Nurses explain more about what the person with dementia needs to do after being diagnosed and how to support them, whether they can continue to drive or need to give up their licence.
The law on driving with dementia
Informing the DVLA of a dementia diagnosis
When someone is diagnosed with dementia, they are legally required to inform the Driver and Vehicle Licensing Agency (DVLA – in England, Scotland and Wales) or the Driver and Vehicle Agency (DVA – in Northern Ireland).
It doesn’t automatically mean they will have to give up driving straight away, although this is possible.
Contact details to notify the DVLA Medical Enquiries:
- by phone: 0300 790 6806
- online
- by post: Drivers’ Medical Enquiries, DVLA, Swansea, SA99 1TU
Contact details to notify the DVA Medical Issues:
- by phone: 0300 200 7861
- by email: dva@infrastructure-ni.gov.uk
- by post, sending both parts of the driving licence and a covering letter: Drivers Medical Section, DVA, Castlerock Road, Waterside, Coleraine, BT51 3TB
DVLA/DVA decision
Once the relevant authority has been informed, it might make a decision immediately or:
- contact the person’s doctor for more information
- arrange for them to have a health check
- ask them to take a driving assessment
They will then let the person know the outcome by letter. There are four possible outcomes:
- Their driving licence is renewed.
- They are issued with a shorter licence, for one, two, three or five years.
- They need to adapt their car by fitting special controls (this is more likely for physical disabilities rather than dementia).
- They must stop driving and give up their licence.
If the person continues to drive when they have had to surrender their licence, they could be fined or prosecuted.
If the DVLA/DVA is not informed of a diagnosis, the person’s GP may disclose relevant medical information to the agency. This can be done without their permission but is best avoided if possible, as it can cause distress and resentment.
It is also a legal requirement to inform the person’s insurance company of their diagnosis. If not, their insurance will be invalid.
DVLA/DVA assessment
If the DVLA/DVA is unsure whether a person can still drive safely, they will ask them to take a driving assessment.
There are 20 approved driving assessment centres for this kind of assessment. They can also take place at a related ‘satellite centre’. The DVLA/DVA will refer the person to a location close to their home and pay for the assessment itself.
It is also possible to choose to have the assessment, particularly if the person with dementia wants some extra advice or teaching. To do so, they need to contact the centre directly and pay a fee. Prices vary, but they are between £70 and £90 on average.
What happens during the DVLA/DVA assessment?
The assessment isn’t the same as the one taken as a learner driver. It is carried out by a specialist occupational therapist and an advanced driving instructor who can assess the impact dementia is having on the person’s ability to drive safely. The person with dementia needs to bring their driving licence and glasses if they need them.
It is important to go to the appointment with another person who can drive or go home with them on alternative transport if they are deemed unsafe to drive.
The assessment is supportive in its approach and acknowledges some of the ‘bad habits’ that drivers may pick up over time. If the person can drive safely, the assessors will work with the driver to help them stay on the road.
The assessment takes around two hours and includes the following:
Questions and a written test
Being asked questions about their driving and medical history, as well as any problems they may have while driving. Then they will be asked to undertake a short written test.
Steering and braking test
Using a special static rig, both reaction times and limb strength will be tested. The rig is a car with a steering wheel and foot pedals that is linked to a computer to test these abilities. At this time eyesight will also be checked.
A driving test on a set route
This will best show the person’s capabilities as the main part of the assessment. The test will take place in a dual-control car, meaning there is a brake on both the passenger and driver sides. To help the person get used to the test car, some centres have a private road so that they can drive around a little before while also allowing the instructor to check they are safe to be on a public road.
The next step is driving on a set route with the advanced driving instructor in the passenger seat, while the occupational therapist sits behind.
Results
Once the assessment is completed, the assessor will explain their findings. If it is decided that the person can drive safely, they’ll get advice on how to do so confidently.
If the assessors decide that the person is not safe to drive, they will be informed of other options.
If the DVLA/DVA requests the assessment, the centre will send them a report. The licence holder can also request a copy.
When the person with dementia is legally required to stop driving
The requirement to stop driving will depend on the person and their symptoms. In some cases, the person’s doctor will tell them they need to stop driving immediately if they are deemed unsafe on the road. If the doctor isn’t sure, more tests may be needed, and they will need to stop driving in the meantime.
Regardless of how long it takes for the DVLA/DVA to make a decision on whether someone can drive, it is important to follow medical advice.
Legal penalties for non-disclosure
If the person with dementia doesn’t inform the DVLA/DVA of their diagnosis, their GP may disclose relevant medical information to the agency. This can be done without their permission, but is best avoided if possible, as it can cause distress and resentment. The person with dementia could be fined up to £1,000 for not telling the DVLA/DVA about their diagnosis, and the person’s insurance may become invalid.
How dementia can affect someone’s ability to drive
While many people who are diagnosed with dementia have been driving for a long time and feel confident, it is important to recognise that there are many factors to driving safely, which can become difficult as symptoms progress and have a greater impact on mental and physical abilities such as:
- memory issues affecting remembering rules of the road, directions or routes
- impaired decision-making and reaction times impacting reactions to the road in a timely manner
- struggling with focusing while reading the road
Young onset dementia and driving
For a person with young onset dementia (where dementia develops before the age of 65) in particular, facing the prospect of not driving, whether that is by choice or because the person with dementia is told they can’t any more due to medical advice, can be especially difficult, especially as it can impact their job or ability to drive children around.
Finding support from those who understand their circumstances and can relate to what they are going through can be especially helpful: learn more about support groups and services.
Deciding to continue to drive
Not everyone who has dementia will need to stop driving straight away. Deciding to continue to drive should be between the person, their GP, and those caring for them.
Tips for driving with dementia
Some things can be done to increase confidence and maintain independence for as long as possible while driving, including:
- Trying to drive in daylight and during quieter times
- Keeping to familiar routes and short distances
- Reducing distractions, such as turning off the radio and limiting conversations
- Having a passenger in the car to help navigate
Continual assessment of someone’s ability to drive
If possible, go out in the car with the person at regular intervals so you can see if they are driving safely. If you believe they are no longer safe to drive:
- Sit down and explain why you are worried. It may help if they also hear this from other family members, friends, or their GP. Stay calm so they feel respected and can see that you recognise that it’s a difficult situation
- Talk to them about the benefits of not driving – for example, saving money on tax, insurance and fuel
- Suggest some alternatives to driving, like walking as a way to get some fresh air and exercise, or using their bus pass for free travel
Deciding to stop driving
Making the decision
Often, it’s better if the person with dementia stops driving voluntarily. This reduces the risk to them and others and allows them to feel more in control of what can be a difficult situation.
Notifying the DVLA
If the driver decides to surrender their licence, they need to inform the DVLA/DVA.
In England, Scotland and Wales they should use the Declaration of voluntary surrender for medical reasons form.
In Northern Ireland, they should send both parts of their driving licence and a cover letter explaining their condition to the DVA at the address above.
Supporting someone with dementia who has decided to stop driving
One of the most important things that you can do is support the person and acknowledge their feelings. While some will feel relieved, others will feel a huge sense of loss. Whatever they are feeling, listening and validating their feelings is a big step in offering support.
Talking to someone with dementia about their driving
If someone with dementia refuses to stop driving
While it is against the law to keep driving if the DVLA/DVA has told them it is no longer safe to do so, some people will not want to. This can be worrying for their family, who may be wondering how to get someone with dementia to stop driving.
While it can be concerning, it is worth remembering that the person is not being difficult on purpose; their dementia could mean they can’t see how their symptoms are affecting their driving. The person may not remember that they no longer have a license or have not yet accepted their diagnosis.
If this is the case, the person’s family or doctor should write in confidence to the DVLA/DVA. The agency will be in contact with the local police.
Although it may feel difficult, supporting someone who is unsafe to drive but continues to try to is in their best interest.
Some ways that you may be able to help include:
- hiding car keys
- giving away or selling the car
- parking the car out of sight
- disable the car or lock the steering wheel
Car insurance when driving with dementia
When someone is diagnosed, they must tell their car insurance provider straight away. If they fail to do so, their insurance could be invalid. In the UK, it is illegal to drive without third-party insurance at a minimum.
Support for those affected by dementia
To speak to a dementia specialist Admiral Nurse about driving or any other aspect of dementia, please call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December), email helpline@dementiauk.org or pre-book a phone or video call with an Admiral Nurse.
Dementia UK resources
Other resources
- Government advice on dementia and driving
- Driving Mobility Centres
- Driving and Vehicle Licensing Agency (DVLA – England, Scotland and Wales)
- Driver and Vehicle Agency (DVA – Northern Ireland)
- Motability – vehicle leasing scheme for people on certain disability benefits: 0300 456 4566
- Blue Badge scheme
England: 0343 100 1000
Scotland: 0343 100 1001
Wales; 0343 100 1002 - Blue Badge scheme – Northern Ireland: 0300 200 7818
- Royal Voluntary Service (RVS)
Call the Dementia UK Helpline
Our free, confidential Dementia Helpline is staffed by our dementia specialist Admiral Nurses who provide information, advice and support with any aspect of dementia.
