The Driving and Dementia Toolkit

Driving a car is a complex task that requires many skills and abilities, including a good understanding of road safety rules, road signs and traffic signals; good vision; and quick reflexes and excellent reaction times. A good memory and the ability to exercise judgement, including an awareness of one’s limitations, are key.

Driving is important in Canada, particularly in rural communities. Regardless, it is important to remember that driving is a privilege not a right, and that as our population ages, medical conditions and medications can affect driving fitness.

Most people want to continue to drive for as long as possible. But driving a car is a complex task that requires many skills and abilities, including a good understanding of road safety rules, road signs and traffic signals; good vision; and quick reflexes and excellent reaction times. A good memory and the ability to exercise judgement, including an awareness of one’s limitations, are key

Problems experienced
Dementia is a general term for diseases that affect the chemicals and structures of the brain. Alzheimer’s disease and stroke are the two most common causes of dementia. Many problems commonly experienced in dementia can seriously limit a person’s ability to drive safely. Examples are increasing forgetfulness, disorientation to time and place, difficulty concentrating and shifting attention, deficits in thinking and judgement, and visual perceptual problems such as how things are seen in space, in relation to each other. The progressive stages of a dementia are commonly named as early, middle and severe. People in the early stage have only minimal impairments and may be able to drive safely with some adjustments. But as the disease progresses, memory and functional abilities worsen, increasing the risk of accidents. In fact, the risk of accident doubles every five years from dementia onset. To help a person prepare for eventual driving retirement, discussions about driving must begin at the first sign of memory loss.

Warning signs: When should you worry?
Questions for the person with dementia

Have you noticed any change in your driving skills?
Do other drivers honk at you?
Have you lost confidence in your overall driving ability, leading you to drive less often or only in good weather?
Have you ever become lost while driving or forgotten where you were going?
Have you ever mixed up the gas and brake pedals?
Have you had any car accidents or minor fender-benders in the last year?
Have you received any traffic citations?
Have others criticized your driving?

Questions for caregivers
Ask yourself: Do others feel uncomfortable driving with the person with dementia? Are others forced to drive defensively to accommodate his or her driving style? Is a co-pilot needed to navigate or to alert the person of hazardous events or conditions? Has there been evidence of loss of ability in other areas of daily living activities?

Physician responsibilities
People with dementia must have their fitness to drive evaluated and monitored. In most provinces, physicians (and certain other health professionals) are legally responsible for identifying people who may be at risk for accidents and are required by law to notify the responsible authorities. If the person continues to drive without a valid licence, then his or her car insurance will not be valid and he or she can be charged by the police.In most situations, a doctor’s decision to recommend that a person stop driving is based on an evaluation of that person’s cognition (thinking processes), as well the potential impact of other medical problems, such as poor vision, neurological disorders (e.g., Parkinson’s disease, stroke) or heart conditions (e.g., fainting, chest pain), and medications.

Assessment procedures
Off- and on-road assessments

1) In most provinces in Canada, older people must have a periodic evaluation of their driving abilities in order to maintain their driving privilege. In Ontario, for example, older people are asked to take a three-part test every two years starting at age 80. This consists of a vision test, a multiple-choice written test of driving rules of the road and a group session. Unfortunately, this test does not properly assess those driving skills typically affected by dementia. As a result, a person with dementia may pass this three-part test even if he or she is at high risk of accidents and is unsafe to drive.

2) For people with dementia, a visit to the doctor can sometimes help decide if the person is fit to drive. If there is any doubt, the doctor might refer the person to a specialized memory-loss clinic for a complete assessment (paper- and pencil-based tests) of driving fitness.

3) In more complex situations, a person can be referred by the doctor or the provincial registrar for a specialized on-road test. These tests usually involve:

a paper-based screening test of cognition (e.g., memory, reaction time)
a possible test in a car simulator
an on-road test in a dual-brake car driven on a set route

The in-car assessment is conducted with a driving instructor and an occupational therapist and can be very expensive ($500–800). If the person is a veteran, however, Veterans Affairs Canada may cover the cost with a physician’s letter.

Planning for driving retirement
Although a person with early dementia may still be able to drive safely, he or she will need to plan for eventual driving retirement. Some people feel that being told they need to stop driving undermines their dignity, and can lead to loss of self-worth and a depressed mood. The following questions and compensatory strategies may help you approach the transition:

How much do you drive?
Can you say, in your own words, why driving is important to you?
Have you ever considered stopping driving?
(If yes) Under what circumstances?
(If no) Would you ever consider it, given the diagnosis of dementia?
What would it mean to you to stop driving?
If you stopped driving, how would you get around?
Who are the people that can help you get around after you stop driving?
How accessible is your current residence to alternative means of transportation, such as public buses?

Although not risk-free, compensatory strategies include taking a 55 Alive or a driver refresher course, driving only familiar routes or driving slowly, and not driving at night or in poor weather. Drivers should be encouraged to turn off the radio, talking with or having companions or pets in the car while driving. They should avoid busy intersections and the expressways, as well as rush-hour traffic. The use of assistive devices such as wide-view mirrors or GPS and a car that is easier to drive (automatic transmission, power windows/seat adjustments) is also smart. Coming to the realization that a person can no longer drive requires careful thought and the support of family and health professionals. Having to act suddenly will leave you ill-prepared. Begin by gathering information about alternative means of transportation that may be available while there is time.

Follow-up
Make a follow-up appointment with a doctor for six to 12 months (or sooner, depending on the doctor’s recommendation), but bring this forward if you notice deterioration (e.g., greater problems with memory, reaction time or in your overall medical condition) before this appointment. If you are unable or unwilling to return for a follow-up appointment then the doctor may need to notify the provincial registrar that follow-up is required.

Excerpted from The Driving and Dementia Toolkit: For Patients and Caregivers, 2011 (Byszewski A, Aminzadeh F, Robinson K, Molnar F, Dalziel W et al.).

Reprinted with permission of The Regional Geriatric Program of Eastern Ontario (rgpeo.com).