Booklet - 2003

Driving and Dementia by Ritta Kukkastenvehmas, Dementia Research Group

Driving and Dementia

“It’s difficult to be on the passenger seat after years of driving” –person with dementia

We often think about driving as an autonomic action, but in fact it is a very complicated task. Driving involves highly complex interaction between senses, thought processes and manual skills. A person must be able to react quickly to other road users’ actions, judging distances, to be able to read road signs, and to remember where they are going.

Having a diagnosis of dementia doesn’t automatically mean that the person is unable to drive. Many are able to continue driving for some time after the diagnosis. Eventually, however, the illness will affect the person’s ability to drive. Abilities like judgement, attention, orientation, and memory, all of which are important for driving, will be affected.

In dementias that affect the frontal lobes of the brain like Pick’s disease, orientation is often retained, so the person affected rarely gets lost. Manual tasks may become difficult to do, like changing the gears due to loss of ability to carry out familiar movements (apraxia). Judgement may also be affected, for example judging the speed of the car or anticipating the moves of the other road users. People with Lewy body disease often experience visual hallucinations, which can result in change of the attention. These are some examples of how dementia can affect the ability to drive.

Early warning signs
If the person or anyone else has noticed any changes, it is in the interest of the person themselves and other people to consider giving up driving. Sometimes it is the person in the passenger seat who is the first to notice any changes in the way the person with dementia is driving. The first sign may be not feeling as safe in the car as before. The following list may be helpful in monitoring changes.

Early signs of driving problems include:

• Incorrect signalling
• Trouble navigating turns
• Moving in the wrong lane
• Confusion at exits
• Parking inappropriately
• Hitting curbs
• Inappropriate speed
• Delayed responses to unexpected situations
• Increased agitation and irritation when driving
• Scrapes and dents on car
• Getting lost in familiar places
• Accidents

Difficulties in giving up driving

“My children had a meeting without me and decided that they want me to stop driving, but they are making a big deal about nothing. I’m very comfortable on the road. I’ve driven longer than they’ve been alive” –person with dementia

Driving has a symbol meaning of freedom and independence, as well as being a practical way of transport. It is not surprising that giving up driving is very hard. It is always best if the person with dementia decides voluntarily to give up driving, but sometimes the person may be unable to assess their driving skills or insist on driving even when it is no longer safe. There is no one right way to deal with the situation, what works for one doesn’t work for an other. Underneath are listed some possible interventions:

Get support when making and implementing the decision about driving

• Share the responsibility with other family members, friends, and professionals
• Sometimes a letter explaining the reasons for having to give up driving from the treating doctor may be helpful
• Sometimes a respected friend’s opinion is more valued than a family members’

Make the car inaccessible

• Hide the car keys
• Park the car away from the usual place
• Change the colour or the model of the car. It can be helpful if the person can’t recognise the car
• Disable the car
• Sell the car

Alternatives for driving

“I hated to stop driving, but sometimes it nice not to let others worry about the traffic” – person with dementia

If it is possible to find alternatives for getting around, this can make giving up driving less stressful.

• Asking a family member of a friend for a lift
• Taxis. It is possible to set up an account with a local taxi company. The cost can end up more reasonable that way, and managing one’s account can support the person’s independence
• Using public transport. All local authorities must offer free of reduced bus fares to people of pension age and people with disabilities.
• Community transport. Find out from your local authority about the facilities available (Door-to Door transport, Dial a Ride)

Legal requirements

When a person receives a diagnosis of dementia, there are legal requirements about driving:

• By law, anyone holding a current driving licence must inform the Driver and Vehicle Licensing Authority (DVLA) if they receive a diagnosis of dementia.
• If the person with dementia does not wish to continue driving they should return their licence to DVLA
• If the person wants to continue driving they should request a medical investigation. DVLA will send a questionnaire, which seeks permission to obtain reports from the person’s doctor or specialist. They may be required to have a formal driving assessment. Based on the evidence DVLA may issue a driving licence that is valid for a limited period, after which the driving abilities need to be reassessed
• Failure to inform the DVLA of a diagnosis of dementia is a criminal offence punishable by a fine of up to a £ 1000.

Insurance

• If a person receives a diagnosis of dementia they must inform their insurance company, failing this will jeopardise the validity of their insurance
• Driving without a valid insurance is a criminal offence

Giving up driving has great implications, emotionally and practically, for both the person with dementia and their family. It is often one of the first concrete loss for the person due to dementia. This can be extremely difficult time and it is important to have as much support as possible, from family members, friends, and professionals. It is also of utmost importance to involve the person with dementia in decision making and planning of alternatives. The needs of the person with dementia change over time. The importance of driving might change as well; this may helpful to keep in mind at the difficult times.

Ritta Kukkastenvehmas, Dementia Research Group

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