YOU CAN’T STOP ME FROM DRIVING

YOU CAN’T STOP ME FROM DRIVING

            The dementia process creates many dilemmas for caregivers, families, and the medical system.  For those issues, there are seldom easy answers as there is ambiguity about how effective the dementia person is in those areas and what to do about it, as well as their cooperation.  As the disease progresses, there is necessary continuing re-evaluation.  For these issues, a key reason to avoid simply saying “No” to X (driving, managing finances, employment) is that there is a strong link to the dementia patient’s mental and emotional state.  Taking away the keys or control of finances takes away their independence, control of their life, and self-esteem.  Such losses from dementia have strong negative consequences.  In general, it is important to take action before there are serious troubles, but not prematurely.  And one should find ways to cushion the blow, which generally involves deception, so they do not know that they do not believe that their dementia is the reason.  Maybe this sounds too much like being too kind or unable to deal with their responsibility.  Yet the experts agree that spinning into deep depression is best avoided by such means.

            Of such issues, driving is potentially the most dangerous.  Yet, when to take away the keys is neither easy to determine nor easy to carry out.  As to the determination of when, there are a many considerations.   The hardest problem may be the reality of this person’s independence.  It is easy to decide that she/he should not be driving, but the impact on quality of life and state of mind is enormous.  Anger from the person about not driving is normal, but probably not as durable as the depression resulting from such an action.  There is likely to be a massive impact, as most of our activities depend upon driving somewhere.  During the years after her retirement (arranged) and until recent times, Beverly and I were together for most activities so that “no driving” was not very troublesome for her.  That is not commonly the case.

            The issue of what is safe has no easy answer either.  Certainly most of driving is dominated by completely “overlearned” actions and reactions.  Steering, braking, watching the road ahead, etc. are “overlearned.” Whatever is “overlearned” is likely to survive through much of the process of many dementias, including Alzheimer’s.  Driving is no exception.  They can manage those automatic processes very well.  But there are some key matters.  First are the subtle aspects directly in the driving process: e.g., turning left on a left turn light with two left turn lanes, so one has to manage avoiding the car next to yours.  This was problematic for Beverly and I could not get across that this was more complicated.  Looking to the side in addition to viewing the side mirror before changing lanes is another.  Staying between the white lines in multiple lanes will likely become a noticeable problem. We could list many of these subtle aspects.  Second, more dramatic are those complex traffic situations.  If a car pulls out in front of you, the “overlearned” response is automatic and still carried out effectively well into the dementia process.  There is no clear habitual reaction to threading through some traffic mess with someone turning left in front of you, while someone is pulling out from the right, and a pedestrian stepping out to cross the treet.  The sudden, unexpected complications happen all the time in city and in complex freeway situations.  The dementia patient might drive well enough going the few blocks of a suburban street to get to the grocery store.  But it is much more difficult to go across town to the physician’s office.  As the dementia progresses, these more subtle issues and driving in complex situations become difficult for the dementia patient.

            Then there is the complication of way finding.  Beverly once went with me to a building in a strip mall where I went to get a haircut.  Driving away, she was supposedly going right next door to get a soda drink.  But, after the haircut, the car was gone and I could not find her.  I called her phone many times and got no answer.  Around two hours passed before a woman called me on her phone.  Beverly was several miles away with no idea where she was.  But she had the wisdom to go into an office to ask what to do.  This kind woman led her to where I was—by Beverly following her car.  Beverly had been completely lost.

            Even following my car with hers became difficult for her as the disease progressed.  On those occasions, she had others in the car with her.  Probably the failure to follow me was due to the distraction of being  with other people. And distraction is a consequential issue for those with dementia, certainly while driving and in many other circumstances.  Doing anything else, like having a conversation with someone, while in the act of driving is especially dangerous.  

            Then there is, for many dementia patients, the growing process of disinhibition.  One critical aspect is anger with many dementia patients.  When the frontal cortex of the brain is impacted by dementia, emotional responses are overt and exaggerated.  That can present a problem for driving.  Overreacting to a traffic situation with anger can be dangerous. And other emotional reactions, such as sadness , also might disrupt driving.

            And finally, we should imagine the circumstance where there is an accident, not necessarily the fault of the dementia driver.  Maybe I do not need to say much more, as your imagination could fill this in.  Any accident with the dementia patient driving is likely to present problems.  And particularly so if the dementia person has no one else in the car.  He/she is very confused; strange situations bring their confusion to a high level.  Other people, even police, may conclude that there is an alcohol or drug issue with this confused, even difficult, person.  He/she may not even understand what happened and may be unable to make a report or even find their driver’s license and insurance card.  Finally there are the legal implications; who allowed this person to drive?  Insurance might not pay and there could be a legal suit.

            The process of managing driving worked out very easily for us.  Upon first diagnosis as Alzheimer’s at the Neurology Center at the University of Utah, we were told that she should have a driving evaluation by a person who tests such patients. She did so and received positive results; the only complaint was that she was not careful enough looking to the side for changing lanes.  (Apparently in the test there was no encounter with double left turn lanes.). That gave us both some confidence and assurance and she managed for several years.  As dementia developed, I tried to be the sole driver, but there were occasional exceptions.  Her driving became more problematic, but at least there was no accident or ticket.  About the time I was ready to get the medical system to inform her that she must be tested again, she unexpectedly told me that she would not be driving any more.  She specifically stated that she would not drive because she did not want to “hurt anyone.” From that day on, she never drove or even asked to drive.  Note that there was very little impact on her independence.  We mostly went out together; even when she planned to have lunch with friends, I took her or I arranged for others.

            But this outcome is not typical.  Others have described ongoing (over months) arguments about not driving any more.  For most patients, there is no effective result based on reasoning.  Direct confrontation is generally ineffective.  Dementia patients engage in denial; for some, there is even denial that they ever received a diagnosis.  Or there is the claim that I am doing very well, perhaps coming from others and/or the physician/medical system (“doing well” from the physician, though unrelated to driving).  Or “doing well” in their own sense of how they are functioning.  Ultimately someone will have to take away the keys and/or isolate the car.  Typically this must be done surreptitiously; the keys disappear and the dementia person simply cannot find their keys.  Someone with mechanical knowledge disconnects the battery or some other part, such as the fuel pump fuse.  And the other was telling them the car was in the shop for repairs, which goes on for weeks.  What I heard directly from family members involved was either hiding the keys or leaving the car in the household garage because it  “needed repair.”

            People with dementia should take the driving test at regular intervals.  That is generally better than anyone’s informal assessment.  By the time it is very clear to the nearest relative or friend that driving is not safely, taking the keys should have happened long ago.

            Remember the opening of this discussion.  The loss of driving may precipitate emotional responses, even long-term depression.  Loss of driving should be avoided when the dementia person is still capable.  And loss of driving requires deliberate compensation by others who help—for grocery and other shopping, for dinners out, and so on.  Family members and friends should collaborate with each other to provide this support.

            [A separate issue: Brackey in Creating Moments of Joy  wrote about guns, discussing an incident where a father with dementia shot his own son, thinking the son was a threatening stranger.  In any case, guns should also surreptitiously disappear from access by those with dementia.  Of course, a confrontation over “taking” your guns could be dangerous.]