Your Keys, Your Call, For Now

Driving is freedom, and losing it is one of the hardest parts of this disease. The way to keep the most control is to plan the ending before anyone else has to.

Do I have to stop driving now?

Not automatically. Many people with early dementia can still drive safely for a while. What changes is that you need to be checked, and checked again.

A 2010 practice guideline from the American Academy of Neurology reviewed the evidence on dementia and driving. It found that up to 76% of people with dementia pass an on-road driving test. It also found that, as a group, they are at higher risk than other drivers, and that risk rises as the disease progresses. The guideline advised that people with a Clinical Dementia Rating of 1 or more, roughly the mild dementia stage, should be discouraged from driving, and that people at earlier stages should be evaluated and then re-evaluated about every six months.

So the answer for most people in the early stage is: maybe not yet, but soon enough that it is worth planning now.

Why can't I just judge it myself?

Because dementia affects the parts of thinking you would use to judge it. The guideline rated self-assessment as unreliable.

This is hard to hear. The AAN guideline found that a person's own rating of their driving was not a reliable sign of whether they were safe. That is not a comment on your honesty. The disease can affect awareness of its own effects, which is why people with dementia often rate themselves as safer than they are.

The guideline found other signs more useful: a family member rating your driving as marginal or unsafe, recent crashes or tickets, driving less than before, avoiding certain situations such as night or highway driving, and a lower score on memory screening.

How do I get an objective answer?

Ask your doctor for a referral to a driving evaluation by an occupational therapy driving rehabilitation specialist.

A comprehensive driving evaluation usually includes office tests of vision, reaction time and thinking, and a road test in a car with a dual brake. The specialist can tell you whether you are safe to drive, whether some limits would help, such as daytime only or familiar routes, or whether it is time to stop.

The American Occupational Therapy Association has a directory of driving rehabilitation specialists. These evaluations are often not covered by insurance, so ask about the cost.

Rules on reporting dementia to the state differ. In some states, doctors are required or permitted to report a diagnosis that may affect driving; others leave it to the driver. Ask your doctor what applies where you live.

How do I plan to stop on my own terms?

Decide now what will tell you it is time, write it down, and set up the alternatives first.

People who stop driving on their own terms usually do it in steps:

• Agree on warning signs with someone you trust. A ticket, a fender bender, getting lost on a familiar drive, a near miss, a failed evaluation.
• Write it down. The Alzheimer's Association offers a driving agreement you can sign now, naming who you trust to tell you when it is time. It keeps the decision yours, made while you could think it through.
• Cut back first. No night driving, no highways, no bad weather, familiar routes only.
• Build the alternatives before you need them. Rides from family and friends on a set schedule, a ride-share app on your phone, your local senior transportation program, delivery for groceries and prescriptions.
• Plan what happens to the car. Selling it, giving it to a grandchild, keeping it for someone else to drive you in.

What do I do with the feelings?

Expect it to hurt. Losing driving is a real loss, and it is fine to grieve it.

For many people, driving is the clearest symbol of independence. Giving it up can feel like the diagnosis becoming real. Talk about it with the people close to you, and with others who have been through it.

It also helps to count what you keep. Many people find that once the stress of driving is gone, they enjoy outings more. You can look out the window. You do not have to find parking. And you made the decision, which is not the same as having it made for you.