Dementia and driving: telling the DVLA, and talking about stopping

The simplest way through is to sit down together, soon after the diagnosis, and fill in the online form or form CG1 with your relative. CG1 asks about memory problems and any help needed day to day, for the GP's and consultant's details, and for permission for doctors to share medical information with the DVLA. It also offers the choice to surrender the licence there and then. Doing it together means it is their report, in their name, and they have not been reported by somebody else. Ring the insurer on the same day. Keep a note of the date of both, because you may be asked later.

If the diagnosis is recent, the memory clinic or GP should already have mentioned driving. GMC guidance tells doctors that when a patient has a condition that could affect driving, they should explain it, tell the patient they have a legal duty to inform the DVLA, and write that advice in the medical record. If nobody raised it, ask at the next appointment. Getting a dementia diagnosis covers the rest of what that appointment should include.

The DVLA's own guidance for doctors admits that it is difficult to assess driving ability in people with dementia, because the condition shows itself differently in different people and moves at different speeds. That is why the decision usually rests on medical reports, and why it may ask for a formal driving assessment. In early dementia, where enough skill remains and the condition is progressing slowly, a licence can be issued subject to annual review.

A driving assessment is not a driving test in the usual sense. Dementia UK describes it as being carried out by an occupational therapist and an advanced driving instructor, with questions about driving and health, checks of reaction times and eyesight, and a drive on a set route in a dual-control car. The centres that carry out these assessments belong to Driving Mobility, which has a finder for the one nearest to you. The DVLA may refer your relative to one, or a family can arrange an assessment themselves for an independent view. Go with them, and make sure there is another way home in case they are told not to drive.

Whatever the letter says, it is a decision about today. Dementia is progressive, and the Alzheimer's Society says that everyone with dementia will eventually be unable to drive safely, with most drivers with Alzheimer's disease needing to stop in the middle stage. A licence granted this year does not settle the question for next year, so keep going out in the car with your relative from time to time and keep an eye on the signs in the section below.

1. 1

   Talk to them, and offer to do it together

   First

   Explain that telling the DVLA is the law and that it does not automatically mean losing the licence. Offer to fill in the form with them. Point out that without it, the insurance may not be valid, which puts their savings at risk if there is an accident.
2. 2

   Ask the GP to raise it

   Next

   Book an appointment and tell the surgery beforehand what worries you. GMC guidance asks doctors to explain the legal duty, and to make every reasonable effort to persuade a patient who should not be driving to stop. A doctor's advice can carry a weight that a son or daughter's does not.
3. 3

   The GP can tell the DVLA

   If it comes to that

   Under GMC guidance, if a patient cannot understand the advice, for example because of dementia, the doctor should inform the DVLA as soon as practicable. If a patient keeps driving against advice and others are at risk, the doctor should tell the DVLA medical adviser, and let the patient know in writing afterwards.
4. 4

   Family can write to the DVLA

   The last step

   Dementia UK says that where a person cannot see how their symptoms affect their driving, the family or the doctor should write to the DVLA in confidence. The Alzheimer's Society says close family can tell the DVLA if needed. Keep this for when the steps above have not worked.

The order matters for your relationship as much as for the outcome. A person who finds out that their daughter reported them can hold on to that for a long time, and dementia can make it harder to put right. A person told by their doctor that driving has to be reviewed has heard it from somebody whose job it is to say it. Dementia UK notes that a GP disclosing to the DVLA without the person's agreement is best avoided where possible, because of the distress and resentment it can cause, but that it can be done.

If you are at the point of worrying about a crash this week, do not wait for the next appointment. Ring the surgery, say that your relative has dementia and is still driving against advice, and ask for the GP to call you back. When someone with dementia refuses care covers the wider question of refusal, including mental capacity, and a Dementia UK Admiral Nurse can talk the situation through with you: Admiral Nurses and free dementia support explains how to reach one.

One of these on its own, once, is a reason to watch more closely and mention it to the GP. Several, or one that keeps happening, is a reason to ask the GP to review driving now rather than waiting for the DVLA's next review date. The Alzheimer's Society also notes that some types of dementia bring earlier risks: visual hallucinations are common in dementia with Lewy bodies, and impulsive behaviour is common in frontotemporal dementia. Both can make driving unsafe before memory is badly affected.

While your relative is still allowed to drive, Dementia UK suggests some ways to keep it safer for longer: driving in daylight and at quieter times, keeping to familiar routes and short distances, turning off the radio and keeping conversation to a minimum, and having a passenger to help with directions.

Some people are relieved. Driving may have become stressful, and the Alzheimer's Society says some people with dementia choose to stop for that reason. Others feel it as a heavy loss. Dementia UK's advice is that listening to and acknowledging those feelings, whatever they are, is one of the most important things a family can do.

When they keep driving after being told to stopSection titled When%20they%20keep%20driving%20after%20being%20told%20to%20stop

Driving after the DVLA has said no is against the law, and it may also mean driving uninsured. Dementia UK is careful to say that a person who does this is not being difficult on purpose: they may not remember that the licence has gone, or may not be able to see how their symptoms affect them. If talking has not worked, Dementia UK lists steps families sometimes have to take: hiding the car keys, parking the car out of sight, disabling the car or locking the steering wheel, or selling or giving away the car. These are for when the conversation has been had and has not held, not a way to avoid having it.

A carer who drives can keep most of the old routine going: the Tuesday supermarket trip, the hairdresser, the lunch club, the appointment at the memory clinic, with somebody alongside who can help with the parking, the shopping and the way back to the car. When the car goes and your relative still needs to get to appointments, shops and friends, search for carers near you and compare their rates. Find a carer who drives lets you choose between a carer with their own car and one who will drive yours, and can carers take you out covers what an outing involves.

Driving licences and motor insurance are not part of the checks PrimeCarers makes on carers. Every carer has had an identity check, a right to work check, an enhanced DBS check on the Update Service and an online interview, and is insured while they work, but that insurance is separate from their car. Ask to see the licence and confirm the car insurance covers driving your relative before the first journey; carer car insurance explains what to look for. The cost of care for dementia sets out what a fuller week of help costs if the car was one of several things your relative was managing alone.