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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Wednesday, May 15, 2013

The Question of Driving

Washington DC
When I was a family doctor in a small town, one of the most difficult tasks was telling an elderly or seriously ill person that his driving was no longer safe and he would have to give up his license.  In our culture, losing one’s driving privileges is a significant blow to the ego, especially for men.

As I was driving this past Saturday, I had a disturbing experience.  Every three or four months I drive 3½ hours to southern Virginia and 3½ hours back to Washington to visit my friend Jens Soering, who has served 26 years of a life sentence for a crime that I believe he didn’t commit.  It’s a long trip and I have to get up much earlier than usual and, since I don’t sleep well anyway, I don’t get much sleep. 

What I noticed was difficulty following the thread of conversation on National Public Radio while simultaneously paying attention to my driving.  I couldn’t follow any concept that required concentration.  It seemed that I could only pay attention to one thing at a time, either the driving or the radio.  I was concerned that if I tried to pay enough attention to the radio to understand, I wouldn’t be able to drive as well.

I didn’t have the same trouble driving back to DC that afternoon, so I assumed my trouble had just been my tiredness from too little sleep, but it got me to thinking about driving in the face of my diagnosis.  Ordinarily, I feel no deterioration in my driving ability compared with my skills before my Alzheimer’s diagnosis (but, as we’ll see below, it turns out that my own rating of safety doesn’t mean much).  My neurologist—using the nationally recognized neurology standards—isn’t concerned.  But if I did have a serious accident that was judged my fault, would I be risking my insurance company refusing to cover me?  Or even that I would face criminal charges for negligence?  I could just imagine myself in a court room as the prosecutor intoned: “Dr Hilfiker you knew you were cognitively impaired and yet you put yourself behind the wheel of a car.  What can you say to this family of the little girl who died as a result?”  OK, a little melodramatic but you get the point.

Should I be driving?  It’s obviously an important question, but it doesn’t feel like a particularly powerful emotional issue for me (we’ll see about that when it’s time to stop, of course).  In practice it will certainly be difficult for Marja and me.  Even though we don’t have a car and can get around Washington quite well with a combination of good public transportation and our bikes, it will still mean that Marja will have to drive those short trips around the city (for which we borrow friends’ cars) and the occasional long trips in rental cars to places we can’t get to by public transportation.  I’ve always done most of the driving; Marja doesn’t enjoy it and becomes anxious and tense while driving, so it will be an adjustment for her.  But we’ll deal with it.

Should I be driving? 

I emailed my neurologist to get advice and he wrote back essentially advising me not to worry about it, yet. 

He wrote that the American Academy of Neurology has published guidelines for auto safety for people with Alzheimer’s (  (The following a bit technical but stay with me.) 

There are six useful factors to consider in determining how safe a person is driving.  The most important is the Clinical Dementia Rating scale, which requires a professional neurological exam (but the criteria can be found at

The other five can supplement the dementia rating:

  1. a caregiver's rating of a patient's driving ability as marginal or unsafe
  2. a history of crashes or traffic citations in the last five years
  3. the patient deliberately reducing driving mileage or avoiding driving in certain situations
  4. a Mini-Mental State Examination score of 24 or less and
  5. aggressive or impulsive personality characteristics. 

 As I mentioned above, research indicates that your own rating of your safe driving ability isn’t correlated with the results of an on-road-driving-test. 

 (Note: This same webpage says that insurance companies and licensing agents have a demerit point system based only on previous crashes or citations, but I couldn’t find a description of the exact criteria.)

I was a little surprised that the implication on the Academy’s website was that any person who can pass an on-road-driving-test is judged safe, which seems a little loose to me.  I would think that the biggest issue in safe driving would be distractibility, and I doubt a routine driving test would measure that very well.

My neurologist believes my dementia score to be essentially zero, so, according to the criteria, I can still consider myself safe to drive, which fits with my subjective conclusion.  But I know it’s only a matter of time.  Alzheimer’s is a disease of constant losses.  Losing one’s driver’s license is, in our culture, a highly symbolic event.  I only hope I have the grace to accept that loss when it comes.


  1. Dear David,

    As with any activity: do it as long as you really enjoy it. You'll know.


    1. This is one of the places where the researchers would disagree with what most of us believe. The research indicates the people are lousy at knowing when they should stop. Your own sense of how long you can keep driving doesn't correlate with the results of an on-road-driving-test. It's a problem.

  2. Anonymous5/17/2013

    Thank you for sharing this information. It makes the difficult decision of taking mom's keys so much more clear. I appreciate you taking the time to share what you are learning through this journey. This blog is one of God's gifts to me, as I walk through this disease with my mom.

  3. And the good news (or bad) is that you would never be sitting in a courtroom being asked about why you were driving. Your family members could be asked in a courtroom why they thought you were okay to drive. So I guess its up to our loved ones to take away the keys.

    A good example of what I am saying. My Father did not have AD, we found out later that he had a brain cancer (he was in the first landing party in Nagasaki and the dust was falling everywhere. And he had skin cancer problems his whole adult life). He was living alone, widowed, and told my brother (his POA) "If I could find a woman to move in and take care of me, I'd sign over the house to her." My brother called me up frantic, worrying that he'd find some floozy somewhere, move her in and sign over the house. I told Steve, "He has a diagnosis of dementia from the cancer. He's not responsible for a contract." He could sign the house over to every woman in town, but he cannot sign contracts. Once his doctor or POA decides that he's not cognitively aware enough to sign a valid contract, the living will kicks in and my brother became POA. Sad to say. but in this case, the legalities take over to protect him. My Dad willingly gave up his keys. But not everyone does. Before he became unable to drive, he only drove to two places. His doctor's office and Walmart.

    1. That's an important thought, Lee Ann, that hadn't occurred to me. Caregivers may have a legal responsibility to make sure the patient doesn't drive. It makes it even more important that the caregiver takes responsibility for deciding when to drive. Several people in these comments and emails sent directly to me have described agreements written up in advance between the person with Alzheimer's and the person who will be the caregiver, that the former will be the decision maker regarding driving.
      I've received two very painful emails in which the caregiver didn't know what to do so the patient continued to drive with tragic results.

  4. While being in the driver's seat is an important measure of independence, I think we need to begin to prepare for the loss of it in the same way that we prepare health care powers of attorney and financial POAs. I entered into an agreement with my husband early on in my journey with Alzheimer's that he would determine how long I would drive. I am still driving five years post-diagnosis. He makes sure that he rides as my passenger approximately every two weeks to see how I'm doing. For my part, I've started exploring alternate means of transportation for some activities so that I don't have to rely totally on him when I'm not driving.

    1. This is a wonderful response to such a difficult question. It's another of those reasons for knowing one's diagnosis early and being able to work out plans for the future. In making plans and going over issues in advance, we avoid some of the defensiveness that can come when the moment is upon us and the caretaker "springs" it on the person with Alzheimer's. And you and your husband have a driving date every two weeks that cements the decision. it takes a good deal of trust between you, but I would think it creates and reinforces trust, too.

    2. Anonymous7/02/2013

      Agree this is brilliant. I stopped riding with or letting my mom drive my son anywhere years ago, then realized if I wouldn't subject us to her, why was I subjecting the general public to her driving? Clincher came with a letter from police department. Also, an elderly driver here killed a cyclist last year while attempted to pass on the shoulder, and was finally indicted for it. I don't want to be in that family's position, or have her in that driver's position. I feel for her loss of independence, but whatever cognitive abilities she has left--I still have mine and I could not live with knowing she killed someone and I should have prevented it.

    3. Ultimately, I'm afraid, it's going to be in the hands of spouses, partners, children, and friends to make sure that the person who is losing their ability to drive stops driving. Some of us wil recognize our disability, of course, but driving is so important in our culture that many will keep driving well beyond their competence. Thirty years ago, it was socially unacceptable to confront someone who'd had too much to drink to tell them they couldn't drive. It's still difficult but at least few disagree with the theory that the rest of us need to make sure the drunk don't drive. It's no different with AD; someday, we'll probably look back and say: "How did we not know that; how did we let that go on so long?"

  5. What a good example of why awareness is so much better than denial.

  6. For any of you who are wondering whether to make proactive decisions about driving, here is a story sent to me by a reader:

    My mom has Alzheimer’s and before she was diagnosed, 4 years ago, I was concerned about her driving her truck in the country—I had a sickening feeling when I heard that there was an accident caused by a truck (sounded like my mom’s) that pulled out in front of an oncoming car which swerved around the truck only to be hit by another truck. The troopers were asking anyone for information about the mysterious truck that left the scene. The troopers did not find that truck. I still think it might have been my mom. The driver killed was in his 40’s. I took mom into the neurologist to take away her driving. She previously dented in someone’s car and also got lost driving home from the store. Sad, but she is quite comfortable letting me do the driving for her.

    These are important decisions!

  7. My mother was not a "good, careful" driver to begin with, but when she began getting lost (and having to be found and brought home) and getting into fender-bender accidents, my sister and I discussed the situation. Mom lived with my sister in a city about 100 miles from me. I believed that my sister should take away the car keys, but my sister didn't want to fight with my mother over the issue. I was afraid that Mom would injure someone. After a few more incidents, my sister finally decided to disconnect the battery in Mom's car. Mom believed that the car wouldn't run anymore without extensive repairs that she didn't want to pay for and that stopped my mom from driving anymore.

    I haven't had any diagnosis, but no longer feel that my driving skills are good enough for me to continue driving. My husband drives wherever we go. Riding in the car is kind of scary to me so I stay at home most of the time. I am actually becoming agoraphobic as well.

  8. Debra Kauffman Fant5/28/2013

    Hello, resource available in the last few years is a computerized driver's simulator that is showing up in OT therapy departments where someone with questions about driving acuity can get an objective review of their problem solving, response time, coordination, and visual ability. I haven't heard any feedback about how helpful it is from those who have been using it, but it seemed to me that it could make that decision easier for people with impairment and for their families. I'm not sure about payment for the evals either -- it would seem sensible for insurers to pay but then again that doesn't seem to hold much water in other areas of medical reimbursement, unfortunately.

    Greeting you from Oregon - a former wife of RPAP'er 1977! Thank you for your sharing here - I will find it very useful in my nursing care of elder clients in my home care services. Grateful to you for your primary care those many years ago! My best to Marja as well.

  9. Hi, Debra. It seems to me that this driving simulator could be extremely important for people with any kind of dementia at any stage. Do you know any details?
    Thanks for writing.

  10. Debra Kauffman Fant2/13/2014

    Hi David - I didn't see your question to me about details for the driving simulator until these many months later…..seems I am still learning things about my computer!

    This is a link from one of our area hospital therapy departments about the simulator with a very small photo of it. Hope that helps track down a resource for your readers.

    1. For anyone interested: I checked into the website that Debra suggests and it looks like a good possibility of getting a good driving simulator. This looks pretty thorough and I'd recommend at least taking a look at it.


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