For many loved ones with Alzheimer's disease (AD), driving is synonymous with their independence ... take away a loved one's car keys and you force your loved one to accept and internalize their AD diagnosis. When I suggested to my wife, Clare, that she stop driving after her AD diagnosis, she said quite firmly that she saw no reason to stop driving. "I may have Alzheimer's, but I still know how to drive. I'll know when I can no longer drive safely."
When a loved one with AD should stop driving is one of the most stressful issues facing caregivers. It was discussed many times in my support group, and it is discussed often in online chat rooms. For me, the decision was simple ... an AD diagnosis implies cognitive impairment that will eventually make driving unsafe, so people should stop driving as soon as possible after their AD diagnosis. There is also the risk of drivers with AD becoming disoriented or lost while driving.
As the disease progresses, AD will lead to even more impaired judgment and reasoning skills. To drive safely, one must process many auditory and visual cues, adjust for the effects of weather and road conditions, interpret the meanings of traffic signals and signage, assess safe following and braking distances, etc. In some states, physicians are required to report names of people diagnosed with AD to the Department of Motor Vehicles (DMV) and the DMV is then responsible for determining whether that person should continue driving or not. But demonstrating safe driving during a particular written or road test on any given day is not indicative of how a person with AD may drive in the evening when AD conditions often worsen, or for how long that person will be able to drive safely.
The American Academy of Neurology (AAN) issued a guideline in 2000 stating that patients should stop driving after a dementia diagnosis, but in 2010 the AAN revised its guideline to say that people with AD "should strongly consider discontinuing driving." Noting that "giving up driving is associated with depression and increased awareness of mortality," AAN's new guideline called for doctors to implement the Clinical Dementia Rating Scale (CDRS) to help determine when dementia patients should stop driving, and allow for input from the patient and caregiver.
The 2010 AAN guidelines also state that "a recent history of collisions or moving violations," among other signs, "may indicate increased risk for driving." May indicate? Must caregivers wait until after collisions and moving violations before taking the keys away from a loved one with AD? The Alzheimer's Association affirms that eventually people with AD will be unable to drive, notes warning signs and risk factors similar to those in the AAN guidelines, and suggests that those risk factors should suggest when it is time to stop driving.
The National Institute on Aging's (NIA) Alzheimer's Disease Education and Referral Center looked at the driving issue in 2000 and updated their guidance in February, 2015 to a position similar to that of AAN. NIA advice is that caregivers and physicians should together "monitor driving closely because the progressive nature of dementia will eventually affect driving ability." But even if loved ones receive a "passing score" on the CDRS from their doctors on any given day, doctors cannot predict just when a person's score will worsen to indicate that driving is dangerous.
Mayo Clinic staff offered this advice for caregivers in 2013: "Ask yourself whether you'd feel safe riding in a vehicle driven by the person who has Alzheimer's - or if you'd feel safe having your loved one drive your children or others. If the answer is no, then you know it's time for him or her to retire from driving."
In my caregiver support group, we always asked new members a variation of the Mayo Clinic question if their spouses with AD were still driving. We asked, "Would you feel comfortable with your spouse driving while your grandchildren are alone with him/her in the car?" Invariably, the answer would be no, but many caregivers would then say something like, "I agree with you but I can't get him/her to stop driving. He/she says that the doctor never said that I had to stop driving, so it can't be that serious. If I shouldn't be driving anymore, the doctor would have told me."
That is a real problem for caregivers. Doctors must be more assertive so caregivers do not have to deal with this very emotional issue by themselves. Doctors may be correct in saying that taking away the car keys may lead to depression in some of their patients with AD. And doctors may also be correct in stating that some of their newly diagnosed patients can probably continue driving safely for quite some time. But doctors also know that, eventually, all of their AD patients will lose the cognitive ability to drive safely ... if that has not already happened. At the very least, doctors should support caregivers who want their loved ones to immediately stop driving, regardless of what any test score indicates.
No one can determine the exact moment when a person with AD will no longer be able to drive safely. It seems irresponsible to wait until a preventable accident or tragedy occurs before taking away the car keys. An AD diagnosis should mandate removal of a driver's license ... if not immediately, then certainly within a period of a few months. The AAN had it correct in 2000 ... a dementia diagnosis should signal an end to driving.
If you would like me to respond to questions or comments about this article, please email me directly at email@example.com. All of my columns on The Huffington Post may be accessed at www.huffingtonpost.com/allan-s-vann. You can learn more about my journey with Alzheimer's and read my articles published in caregiver magazines, medical journals, and in major newspapers at www.allansvann.blogspot.com.
My next blog post will be in 2 weeks. Tentative title ... "Uneven Transitions for Alzheimer's Caregivers."