June 26, 2000 -- Wes is 71 and has been driving a car for all of his adult life. His wife, Joyce, says that his most recent job was driving rental cars back to an agency at the airport in St. Louis. Walter, 83, a retired steel company executive, also loved to drive, especially around the suburban streets of Naperville, Ill., says his daughter Susan.
In addition to a love of the open road, Wes and Walter share something else: Both men have dementia, and both have frightened their family and friends with their on-the-road escapades.
According to the Alzheimer's Association, approximately 4 million people in the U.S. have Alzheimer's disease, and it is estimated that the number could increase to 14 million by 2050, making the prospect of sharing a lane with an Alzheimer's afflicted driver not such a remote possibility.
The risk that these drivers pose to themselves and others is serious enough that the American Academy of Neurology is now telling physicians when to take away a patient's driving privileges. In the new guidelines, issued in the June 27 journal Neurology, the academy says that a person with Alzheimer's disease and moderate dementia has a "substantially increased accident rate" and should not drive.
Neurologists consider a person with moderate dementia to be one who has some difficulty remembering recent events, such that the difficulty interferes with everyday activities. For example, this person might no longer be able to balance a checkbook or may stop a hobby such as woodworking. The person can take care of normal activities such as showering but may need some prompting to initiate the task.
Richard M. Dubinsky, MD, tells WebMD that the AAN's quality standards subcommittee reviewed more than 200 published studies to develop the new guidelines. The evidence is clear: People with moderate or worse dementia "pose a significant traffic safety risk," says Dubinsky, who is lead author of the AAN guideline report.
Dubinsky, an associate professor and vice-chair of the department of neurology at the Kansas University Medical Center in Kansas City, says that people with very mild dementia "are impaired but may continue to drive if they are closely monitored." He says that the guideline recommends that these patients have their driving skills evaluated every six months.
Although he is reluctant to make blanket statements about driving ability, John C. Morris, MD, professor of neurology at Washington University School of Medicine, agrees. "These patients need to be re-evaluated every six months because eventually every Alzheimer's patient will be an unsafe driver," he says. Morris was not involved in drafting the guidelines but says he served as a reviewer for the guidelines.
Louise H. Allen, PhD, says it slowly became apparent to her that her husband's driving days were winding down. He was in the early stages of Alzheimer's disease and he was having trouble recognizing his children. Her clandestine reviews of the checkbook showed that he had trouble keeping track of the finances.
For the first three months after the diagnosis, he continued to drive -- but not alone. "I pretty much insisted on being with him," Allen says.
But she also had a long-term plan that would curb his driving. When his driver's license renewal came in the mail, she hid it until the renewal time expired. That meant her husband, a retired professor at the University of Illinois, would have to go down to the motor vehicles department and re-take his tests. When it became obvious he could no longer pass the written test, he decided it was time to sell his car.
Not all drivers hang up their keys this gracefully, especially when they may be the primary drivers in their household. "I was very lucky," says Allen, herself a retired professor from the same university.
Joyce Bascom says her husband's driving skills also seemed to diminish very silently. "Wes was first diagnosed about five years ago," she tells WebMD. For some time he continued driving and working at the rental car agency with no problems, she says. Then one day she had to take her car in for repairs, so he followed her in his car.
"He was just driving very, very slowly so I told him that I would drive his car back. When I got in the car I discovered there were no brakes. None. That's when I knew he had to stop driving," she said.
Soon after this incident, her husband took the family van very early one morning. "I found out about that when I got a call from a woman who told me that my husband had pulled into a gas station, lost. He asked her to call home and gave her a phone number. It was his mother's phone number," says Bascom. In a final misadventure, her husband drove to the airport; once there, he became confused and was detained by airport security, she says.
Her husband's car is now being kept at another location, and Bascom says she plans to sell it. "He sometimes asks me, 'Where is my car?' and I just tell him it's in the shop being fixed," she says.
Bascom's story is typical, says Dubinsky; driving is a very emotional issue, and taking away driving privileges can severely limit mobility.
"We have a big problem nationwide because we don't have good public transportation, and it can be quite difficult to live an independent life without driving," says Dubinsky. Nonetheless, he says that physicians need to step in and tell the patient that he or she can not longer drive. Since the issue is so emotionally charged, "it's better for the physician to 'take the blame,'" he says.
Susan, who asked for anonymity, says taking the blame is a big issue. She says that her father, Walter, deteriorated over a very brief period of time, during which he made several desperate attempts to "get home -- home being the south side of Chicago where he [lived] many years ago," she says. His children were terrified by what could happen to him.
After one such episode, one of Susan's sisters exercised a durable power of attorney and had Walter admitted "to a secure Alzheimer's unit. ... Our whole family has been in upheaval," says Susan. She says that she is glad the AAN is issuing guidelines so that "other families may be spared."
Dubinsky adds that some states require physicians to inform the departments of motor vehicles about the need to prohibit driving. In California, for example, Alzheimer's disease is a diagnosis that must be reported to the DMV, which automatically revokes the patient's license. Patients are, however, allowed an appeal.
In addition to issuing the new guidelines, the AAN says that research is still needed to determine if there are a subsets of patients with Alzheimer's with moderate dementia who can drive safely, or who can drive safely with enforceable restrictions," such as non-highway driving or driving within a limited geographic area.
While the Alzheimer's Association agrees that people with milder Alzheimer's disease should be discouraged from driving, it released a prepared statement in response to the guidelines, saying "the final determination is one that should be made with full involvement of the individual with the disease, their caregiver, and their health care provider."
"It is very appropriate for the AAN to have some guidelines, and I think these guidelines are very reasonable," says Morris, who on the Alzheimer's Association board of directors. "The problem is that guidelines do not apply to every individual case."
"There are not many studies of people with defined Alzheimer's who have actually been assessed on their ability to handle an automobile in every day, real life situations," he adds. In his own work he has used driving instructors and other "driving evaluators" to assess driving skills. As a result, he says, there are people with mild dementia who are considered safe drivers by professionals who have evaluated their actual driving.
Morris says that a broad application of the new guidelines could "result in some individuals who would have their mobility restricted prematurely." He urges taking an individualized approach for patients whose families or caregivers are not reporting driving problems. He says that driving evaluations can usually be "arranged through occupational therapy departments."
Allen has her own suggestions for coping. She says when it comes to getting loved ones with Alzheimer's disease to stop driving, there are some important things to remember. Cars equal freedom, and the desire to drive is deeply connected to a good lifestyle. See how much of the patient's lifestyle you can keep intact by researching the public transportation available in your community, she says. Some towns offer discounts to seniors, and under the Americans With Disabilities Act, Alzheimer's patients may be entitled to some type of transportation, she says. Also, groups like the American Red Cross offer regular trips to the grocery store in a van with a certified driver.
For a fee, a service called Safe Return will give you a stylish -- but hard to remove -- bracelet for your loved one that has an identification code and two 800 telephone numbers. Should the loved one wander off, bystanders can notify the service.
Finally, doctors and lawyers can be a resource too. "The doctor needs to be brought into it early on," Allen says, noting that doctors can give you an idea of the disease's progression, along with ways to deal with it. Local lawyers who handle Alzheimer's-related cases may know the services available in your community, she says. The local chapter of the Alzheimer's Association also is a good place to start checking out possible resources.
Vital Information:
- The American Academy of Neurology has issued new guidelines on when Alzheimer?s patients should and should not be allowed to drive.
- Patients with moderate dementia should not be allowed to drive. Most of those with very mild dementia may be ok to drive, but they should be re-evaluated every six months.
- Driving can be an emotional issue for many patients, because not being able to drive can take away a person?s independence.