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Who decides when a person with Alzheimer’s or dementia is no longer fit to drive?
Alzheimer's disease, the most common form of dementia, is described as an incurable, degenerative, and terminal disease diagnosed in people over 65 years of age. Less prevalent early-onset Alzheimer's can occur much earlier. An estimated 26, 6 million people worldwide had Alzheimer's in 2006 – A number that may quadruple by 2050.
Although each sufferer experiences Alzheimer's in a unique way, there are many common symptoms including memory loss. As the disease advances, symptoms include confusion, irritability and aggression, mood swings, language breakdown, long-term memory loss, and the general withdrawal of the sufferer as his or her senses decline.
It is estimated that people with Alzheimer’s disease drive, on average, 2.5 years following diagnosis. It does not mean that everyone with Alzheimer’s should - as it affects people in different ways and some more quickly than others. People with early stage, very mild Alzheimer’s disease, can and do drive safely, however when the disease progresses to the moderate or severe stages, then driving must stop.
This poses a social dilemma for most as driving is seen as a fundamental right. It represents freedom, independence, self-worth, inclusion and access. Where the country lacks effective public transportation quitting too soon restricts independence for someone who otherwise may function well for several years. When Alzheimer’s disease is diagnosed it is one of the many issues that have to be evaluated and the future considered.
Risks of Alzheimer’s to Safe Driving
Driving is a complex activity that requires good judgment, quick thinking and fast reactions, as well as good perceptual abilities. For a person with Alzheimer’s, driving inevitably becomes difficult, and he or she may become unsafe on the roads.
With dementia, an individual's capacity to assess his or her driving abilities may also diminish. People with Alzheimer’s are especially likely to minimise the complexity of driving and overestimate their abilities.
There are a number of research studies that illustrate the dangers of driving and Alzheimer’s disease. For example, a Swedish study by Johansson and others found between 47-53% of drivers over 65 years who died in accidents showed either early signs or actually had Alzheimer’s disease.
Poor driving performance increases with increased dementia severity. However, not all people with Alzheimer’s are unsafe drivers at a given point in time and Alzheimer’s should not be the sole justification for suspending driving privileges.
Alzheimer is not like other changes affecting driving
Instead, an on-the-road driving test, or other functional test, is the best way to assess driving skills in dementia. A decline in visuospatial skills, which help drivers judge distances and predict upcoming traffic problems, plays a large role in making people with Alzheimer's unsafe drivers. Small occurrences in their vision such as a dog jumping behind a fence may distract them, so they fail to notice important cues, such as brake lights or traffic signs.
Alzheimer’s should not be compared to other changes in later life that affect driving, such as eyesight problems and slow reaction times. Many older adults who don't have dementia can assess their driving without family intervention and make gradual changes to the way they drive.
Alzheimer progress gradually
The progression of this disease is usually gradual and somewhat unpredictable. Everyone with Alzheimer's disease or other irreversible causes of dementia will eventually lose the ability to drive safely, due to problems with:
- Judgment
- Multi-tasking
- Slowed reaction times
- Impaired spatial skills
- Other cognitive deficits.
Scientists and researchers have found that people with Alzheimer’s gradually scale back their driving. They have found that those with mild Alzheimer’s tend to:
- Drive shorter distances
- Stick to familiar routes
- Don't drive at night
- Don't drive in bad weather
- Don't travel on busy roads
- Avoid driving on weekdays or in peak traffic flow
- Always try use the same vehicle.
These scientists are now creating tests to show when it is time for people with early Alzheimer’s disease to stop driving. In recent studies researchers recruited 40 people with early-stage Alzheimer’s who still had their driver’s licenses to take the road test, and compared how 115 older drivers without dementia handled the same trip.
The results, reported in the journal Neurology, are striking. On average, the Alzheimer’s drivers committed 42 safety mistakes, compared with 33 for the other drivers. Lane violations, such as swerving or hugging the centre line as another car approaches, were the biggest problem for the Alzheimer’s drivers.
Measures to stop the Alzheimer’s Patient from Driving
Families struggle with the decision to limit or stop the family member from driving and the sense of dependence may prevent people with dementia from giving up the car keys.
Unfortunately, no examination or single indicator exists to determine when a person with dementia poses a danger to himself or others. Families must determine when a person's attention span, distance perception or ability to process information makes it difficult for him or her to respond safely in driving situations.
What are the warning signs?
Everyone with irreversible dementia will eventually become unsafe to drive because of the degenerative, progressive nature of the brain disease. The question will always be: - at what point is someone unable to continue to drive safely?
Most specialists feel it's important to help the person with dementia to stop driving as soon as possible. A rule of thumb is to ask yourself whether you feel safe riding in a car or having your family members, including children, riding in a car that the person with dementia is driving.
This is not an easy question for a family and as Alzheimer’s is increasingly diagnosed in its earliest stages, it can be hard to tell when a loved one is becoming a danger.
The person with Alzheimer’s will often make excuses to the family such as
- "I've driven for years without an accident."
- "Just because I got lost doesn't mean I can't drive."
- "I make sure I look where I'm going."
It is important for the family to observe and keep a written record of observations to share with the person, family members and health care professionals. Observations that might indicate the need to stop driving are:
- Forgetting how to locate familiar places
- Failing to observe traffic signals
- Incorrect signalling
- Making slow or poor decisions
- Driving at inappropriate speeds
- Becoming angry and confused while driving
- Hitting curbs
- Poor lane control
- Confusing the brake and gas pedals
- Returning from a routine drive later than usual. The person may be wandering and getting lost in the car.
- Decrease in confidence while driving
- Difficulty turning to see when reversing
- Riding the brake
- Easily distracted while driving
- Difficulty parking within a defined space
- Failure to notice activity on the side of the road
- Not anticipating potential dangerous situations
- Near misses
- Delayed response to unexpected situations
- Confusion at exits
- Stopping in traffic for no apparent reason
In hindsight, many family members and caregivers regret permitting a loved one to drive longer than it was safe. The result is always prolonged anxiety for caregivers and placing others at risk. It is best to get support when making and implementing decisions about driving. The more people who are asked to help, the less any one person has to do and the greater the likelihood that the person with dementia will get the best support.
How do we stop the person with Alzheimer’s from driving?
It is important to consider the person’s feelings and perceived loss of independence when explaining why he or she can no longer drive. Helping the person with dementia make the decision to stop driving — before you have to force the person to stop — can help maintain a positive sense of self-esteem.
The most effective approach to limit or stop driving involves progressive steps and a combination of strategies that fit the family's circumstances, resources and relationships. For people in the early stages of dementia, driving is best reduced over time rather than all at once.
You can ask your doctor to advise the person with dementia not to drive. Involving your doctor in a family discussion on driving is probably more effective than trying by yourself to persuade the person not to drive. Ask the doctor to write a letter stating that the person with Alzheimer’s must not drive or a prescription that says, “No driving.”
Explain your concerns about his or her unsafe driving with the person, giving specific examples, and ask the person to voluntarily stop driving. The following steps might assist in explaining the need to stop driving:
- Assure the person that a ride will be available if he or she needs to go somewhere.
- Ease the transition. Arrange for alternative transportation or you may even be able to establish a payment account with a taxi service so that your loved one won't have to handle money.
- This option may work for people with mild dementia living in urban areas and already accustomed to using these methods where available.
- Reduce the need to drive - Have prescription medicines, groceries or meals delivered and have hairdressers make home visits.
- Friends, neighbours, relatives or caregivers can offer to drive the person with dementia to appointments or other social events.
- Arrange for family and friends to visit regularly and to take your loved one out to run errands.
- When you're together, focus on activities your loved one can still do and enjoy.
- With some foresight, family members can create natural, non-confrontational ways to make driving less appealing or necessary - Relocation may encourage the individual with dementia to limit or stop driving.
- Family members can use financial issues to initiate a change, such as building a case for selling the car by itemizing the many costs of operating a car.
- It is also important to note that if the driver has been diagnosed with Alzheimer’s there is a risk that a vehicle insurance claim may be rejected in the case of an accident occurring after diagnosis.
Role of Caretakers and Family
Because Alzheimer’s cannot be cured and is degenerative, management of patients is essential. Alzheimer's disease is known for placing a great burden on caregivers/family; the pressures can be wide-ranging, involving social, psychological, physical, and economic elements of the caregiver's life.
No two families dealing with dementia will resolve transportation issues in exactly the same way. Roles and relationships within families can affect decisions about when and how a person should stop driving.
Caregivers can reduce stress and increase their chances of success by relying on others for emotional support, transportation assistance, and financial assistance or to meet other needs. Caregivers need to remember that family members tend to follow long-established patterns for making decisions. It is unrealistic to think that patterns will change when handling a difficult issue like driving safety.
Disagreements in families are often the result when individuals do not have the same opportunities to assess driving abilities. Having factual information about driving behaviour does not guarantee families will reach consensus on when to limit driving. However, frequent, open communication about specific, observed behaviours and concerns may help to lessen differences.
Everyone involved in caring for the person with dementia can help by focusing on the key issues - the self-respect of the person with dementia and the safety of everyone on the road.
What if the person won’t stop driving?
If the person insists on driving it might require more drastic measures:
- More desperate measures will include control of access to the car and keys and disabling the car as a last resort.
- Designate one person who will do all the driving and give that individual exclusive access to the car keys.
- Consider selling the car. By selling the car, you may be able to save enough in insurance premiums, fuel and oil, and maintenance costs to pay for public transportation, including taxi rides.
- It might even be best advice to alert the local traffic authorities. Write a letter directly to the authorities and express your concerns, or request that the person’s licence be revoked. The letter should state that “(the person’s full name) is a hazard on the road,” and offer the reason (Alzheimer’s disease).
- To the family member in the early stages of the disease, such actions seem extreme, disrespectful and punitive. People with mild dementia may ignore, undo or manoeuvre around those strategies by driving without a licence, enabling the disabled car or buying a new car to replace one that was sold.
- Although this may seem extreme, the consequences of having someone on the road with severe Alzheimer’s can be devastating.
Conclusion
It is suggested that a person with dementia should make the transition from driver to passenger over a period of time. Open, early and continual communication can help the person with Alzheimer’s and the family to agree on a course of action before a crisis occurs. Once that decision is taken it should however be a firm and final decision. It is important that the safety of the person with Alzheimer’s and that of other road users be protected at all times!
Article originally on Arrive Alive
For more about Alzheimer’s and dementia, visit Dementia SA
