Approaches to Driving Cessation and Dementia as a Required Reportable Condition

When it comes to caring for an individual with dementia, there are few topics more dreaded and avoided by providers, patients, and family members than driving cessation. These conversations are fraught with “potholes,” as no one wants the designation as “the person who takes away the car keys,” yet that is a role in which physicians and other medical providers often find themselves. 

There are currently 5 million Americans diagnosed with dementia,¹ and most of these affected were at some point also drivers. A dementia diagnosis does not, and should not, in itself mean that a person is no longer capable of driving safely. Patients with mild cognitive impairment (MCI) and some in the early stages of some dementias may still possess the skills to safely operate a motor vehicle. However, at some point—usually sooner rather than later—all those with a dementia illness will worsen, and the person will have to give up driving. When exactly this occurs, and what the signs are that predict this for individuals, remains a challenge for medical providers. There is no single test, no simple algorithm, that can identify when someone is no longer able to drive safely.

Most states have established policies for the identification of drivers with physical or mental impairments. The majority rely on voluntary physician reporting; a few states—such as California, where I live—have mandatory reporting laws. Here, a dementia diagnosis is a required reportable condition (seizures and hypoglycemia are two others). They must be reported first to the county public health officer who then reports to the State Department of Motor Vehicles. Failure to report persons with dementia may lead to physician liability if the patient, as a driver, is involved in an automobile accident. In some states (and California is one as well), this incidence may also be grounds for disciplinary action against the provider by the state medical board.

The reporting of a dementia diagnosis, whether mandatory or voluntary, like other laws, may be well-intended but has unintended consequences. These laws were enacted by legislators out of a concern for the public good and are often framed as a public health initiative, similar to the use of seat belts or motorcycle helmets. These laws, however, place physicians and other medical providers in a conflicting role of advocating for patients while simultaneously protecting public safety. And, while there is general agreement that impaired drivers pose a public health safety risk, to single out dementia as a diagnosis when other conditions known to impair driving, such as alcoholism and drug addiction, do not require medical reporting to state authorities, appears unfair and ageist. 

Another unintended consequence is that these laws may serve to deter and delay diagnosis of dementing illnesses. The additional legal requirement to advise a patient not to drive or report their diagnosis to the state presents yet another barrier to early diagnosis. Patients experiencing memory problems or other cognitive changes are fearful of a potential dementia diagnosis and the changes it may mean for them and their family. Few want to voluntarily stop driving or even think there is a problem. Driving, the possession of a driver’s license, is intertwined and overladen with many sociocultural factors: maturity, independence, self-reliance, freedom. In American culture, the attainment of a driver’s license is virtually a rite-of-passage for teenagers—a milestone representing adulthood and new freedom. Thus, it is understandable that the loss or revocation of a driver’s license can be very upsetting. Raise the topic of driving with a patient, and the immediate response is, “I’ve been driving since I was X years old,” or “I’m an excellent driver, I’ve never even had a ticket.”  

Trying to reason with or explain to a person with dementia—who by definition has problems with cognition, including memory, problem-solving, judgement, and reasoning—that they should no longer drive rarely succeeds. It can be very frustrating for family members and upsetting to the person. The Alzheimer’s Association offers three recommendations “when reasoning doesn’t work”: (1) lose the keys, (2) move the car out of sight (I also suggest to families that they take the car away and tell the person it is being repaired; I advise that they may have to repeat the story daily), and (3) disconnect the battery.² I would add that family members also take any automobile club card or other emergency roadside assistance cards out of the person’s wallet, so they do not call and get the battery reconnected.

Many times, families are relieved when a medical provider broaches the subject of driving—happy to have someone else be the “bad guy.” Other times, family members are unaware of the impact even mild cognitive deficits can have on the complex task of driving a car.  I will frequently ask the adult child of a patient with MCI or the early stages of dementia if they would allow their parent to drive with a young child in the car or if they would have any concerns about their parent with dementia driving down a street where children were playing. A positive answer to one or both questions shows me that, at some level, they are aware of the person’s limitations and potential danger they pose as a driver.  

Being proactive, rather than waiting for a tragedy to occur where someone gets injured, or even killed, is good medicine and just good common sense. Issues of driving should be part of the routine discussion with all patients with a diagnosis of MCI or dementia. It is a conversation that may need to be started and continued over several visits, and providers should be prepared for denial, push-back, and even threats of “I am never coming back here.” Thankfully, in my experience, because the person has memory problems, most of the time they will not remember what they said and will return for care and follow-up. 

Whatever disincentives exist that prevent providers from having this tough conversation, acting to report someone with dementia, or prevent families from intervening, the “clear and present danger” that a person with a diagnosis of dementia presents to themselves and others on the road should be sufficient incentive to act. Guidelines have been developed by several organizations to assist medical providers in identifying patients at higher risk of unsafe driving without unnecessarily restricting people who do not pose a danger.^3,4

Advances in technology, such as simulators and virtual reality that can be incorporated into licensure renewal, may provide a way to identify drivers who present a health and safety risk and who should not be driving. But we are not quite there yet. State authorities who issue driver’s licenses need to develop more proactive approaches to driver license renewal and assessment, which could reduce or remove the burden on medical providers to act as the driving license police. For now, responsibility remains with physicians and other medical providers, starting with the conversation that none of us wants to have.

To read more articles in this issue, visit the 2017 November/December issue page

To read more ALTC expert commentary and news, visit the homepage

References

1. Alzheimer’s disease facts and figures. Alzheimer’s Association website. https://www.alz.org/mglc/in_my_community_60862.asp. Accessed November 13, 2017.
2. Dementia & driving resource center. Alzheimer’s Association website. https://www.alz.org/care/alzheimers-dementia-and-driving.asp. Accessed November 13, 2017.
3. Iverson DJ, Gronseth GS, Reger MA, Classen S, Dubinsky RM, Rizzo M. Practice parameter update: evaluation and managemtn of driving risk in dementia. Neurol. 2010;74(16):1316-1334.
4. Carr DB, Schwartzbeg JG, Manning L, Sempek J. Physicians Guide to Assessing and Counseling Older Drivers. 2nd edition. Washington, DC: NHTS; 2010.