In 2006, seven years after being diagnosed with Alzheimer's, Tony Lauriano, 78, was still driving. But he was getting lost, driving too close to other cars, making wrong turns and driving too fast. His wife Olga, 70, was alarmed - both for Tony and herself, who, unable to drive, was often the one sitting terrified in the passenger seat.
She went to her husband's doctor and told her what was going on. The doctor told Tony he shouldn't be driving. Olga was relieved - she wanted Tony to get mad at the doctor, not her. "I'm the one that has to live with him," she said. But Tony wasn't having any of it and continued to drive.
Olga turned to their son and had him tell Tony he couldn't use the car anymore. Tony reluctantly handed over the keys and Olga quickly sold the almost-brand new car. But Tony wouldn't let the issue go. "I can't understand, why can't I drive?" he would repeatedly say to his wife. Now, three years later, Tony still brings up the issue. "Till this day, he says 'I can still drive,'" Olga says with a sigh. Tony makes his wife continually renew his driver's license, but when it comes up for renewal this year, she said she plans to let it expire.
"I'm over it, but in the beginning it was tough," Tony said. "I lost something, you know? I've been driving since I was 19 - my whole life. Giving it up, I went into shock. That was my independence."
Driving is considered one of the hallmarks of adulthood and for many people, especially those living in areas without adequate public transportation, the notion of giving up the car keys is hard to swallow. The struggle over when to force a loved one to stop driving takes place among many older people and their loved ones. Alana Rosenstein, director of early stage programs at the Long Island Alzheimer's Foundation, said the additional challenge with dementia is that while some patients may feel they are capable of driving, the disease can interfere with their decision making and judgment. They might also be less able to handle the multiple inputs of driving situations, she said.
"If they're going along and everything is routine, they might be OK but now someone is cutting them off on the right and they have to be able to process that and be able to look in their rearview mirror to see what's going on and look in the sideview mirror and make a quick judgment about how to react," she said. "That may be too much for the person to process at once."
Rosenstein said that some signs that a person may need to stop driving include: If the person is having multiple accidents or if the car is coming home with dings they're really not able to explain; if the person is driving too slow or too cautiously; if the person is missing stop signs or signaling inappropriately.
Family members often have to battle over the car keys. Regardless of the stage of the disease, a person can sometimes retain the mechanics of driving, even if they've lost the function of driving. "So, they can go out and turn the key on and put the car in gear," said Teepa Snow, a dementia care specialist and trainer based in North Carolina. "What they have no idea is where they're going, and yet they get frustrated when somebody says no because they know what to do. They don't, but they think they do. And so, the caregiver, of course thinks, well, I'll just let him drive as long as he stays local."
But that can lead to disaster, Rosenstein said. "I always tell people that we're doing a balancing act of safety and independence," she said. "One of the things we tell families is if they can be pulled out of the role of being the bad guy when it comes to driving, then that can make things easier. Because the family member is the one who has to live it day in and day out."
She suggests having a conversation with the person's doctor to see what his or her perception is of the person's abilities. There are also organizations where, for a fee, a person can have their driving and cognitive abilities evaluated. However, these organizations can only recommend a person stop driving, they cannot enforce it.
The process of evaluating drivers and determining whether they can have a license varies from state to state. In New York, on the department of motor vehicles Web site, there is a form requesting a driver evaluation. It is anonymous and can be submitted by a physician or someone in the family or community. The person then gets a letter in the mail stating that they need to come in for a driving evaluation.
But Rosenstein said even the evaluation can be misleading. Alzheimer's patients can often be "on" in certain situations, for a limited time, exhibiting normal behavior. So, Rosenstein said, a person could conceivably pass a driving test because they're having a good day. Ideally, she said, a person's cognitive abilities should be tested.
Olga and Tony have had to change their lifestyle. Gone are Olga's beloved trips to suburban malls and ability to dine out wherever they choose. A neighbor helps them get to supermarkets and run other errands. "You lose your ability to get to different places and you've got to settle," Olga said.
"We both lost out in that sense," Tony said.