The Caregiver’s Voice featured Michael Ellenbogen, who recently participated in a 2-hour panel about driving. Diagnosed with young onset Alzheimer’s at age 49, Michael’s mission is to raise awareness about people who are living with Alzheimer’s disease. One area he’s passionate about is driving. Lori La Bey hosts the Alzheimer’s Speaks Radio show, which raises awareness among caregivers, professionals, and those living with the disease.
The Caregiver’s Voice listened to part of the program then invited Michael to share his thoughts–see attributed text and unattributed highlights. (Edited TCV Ed.)
Michael Ellenbogen, Alzheimer’s Advocate, asks, “True or False? After you are diagnosed with dementia or Alzheimer’s, you must immediately surrender your driver’s license.”
I am not saying that people with AD should not eventfully stop driving, but it should be done for the right reasons – that they will become a danger to themselves or someone else.
Many are still be able to navigate around town safely and remain independent, which increases quality of life.
Matt Gurwell, founder & CEO of Keeping Us Safe, performs a three-hour assessment of a person’s ability to drive. Matt’s team begins with a tabletop self-assessment at the person’s home followed by a test drive. Together, with the family, they arrive at a mutually agreeable plan for driving. Sometimes this means a complete “retirement” from driving, other times one can continue driving with ongoing assessments. Matt believes that the family must decide and most often, he says, “the family makes the right decision.”
Michael Ellenbogen’s doctor at the National Institute of Health suggested he stop driving. Michael asked if he had failed in some way or if his driving was bad. “No,” the doctor said adding his concern given Michael’s Alzheimer’s diagnosis. Michael said he began losing his self-esteem and along with this loss, his driving skills declined.
It took some time, but Michael managed to regain some measure of confidence and ambitiously tested himself by driving from Pennsylvania to South Carolina to visit his daughter. [He didn’t mention whether or not his wife was with him, but she mostly likely was.] He did well. He laughingly explains, while he was a speed demon years earlier who tailgated; today, he drives the speed limit and leaves enough space between his car and the one in front.
People have the misconception that if a person with AD is in an accident the insurance company will not pay for the claim. This is not entirely true.
However, Michael does recommend a spouse or family member drive with the diagnosed person at least once a month so they can determine when one’s skills have declined enough to warrant a “retirement” from driving.
Mary Bailey, former President and CEO of Bailey and Associates lives with early onset Alzheimer’s disease at age 58. She gave up driving after her diagnosis. Her father’s experience may have influenced her. Diagnosed with vascular dementia, her father was lost while driving and the family didn’t find him for 9 hours. Despite the trauma it caused him, the family took his car away.
Although Mary feels stuck in her own home, she said when she did drive she got lost despite having a GPS. She adds that she was concerned she’d become a potential danger to others without anyone noticing. When she perceived “cars coming out of nowhere” and confused the “sounds coming from the radio with a siren” she decided to stop driving.
Kathy Murray diagnosed in 2009 at age 57, and more recently with Lewy body dementia, chose to limit her driving to a 10-mile radius after a high-level career in banking. After shopping, she forgot where she parked her car. One time she had no clue where it was and she began to panic. Paralyzed by fear, she decided afterward to limit her driving. She was also concerned about her grandchildren being in the car. If something happened, she wouldn’t be able to live with herself.
We also need to insure that all those who are living with this disease have other options when they can no longer drive. While there may be benefits for people over the age of 65, there are none for those below that age depending on the state they live in.
David Weisman, MD, Principle Investigator for clinical trials in stroke, Alzheimer’s disease, multiple sclerosis, and Parkinson’s disease says, “In my experience most humans will self-restrict their driving as appropriate …” when they are older or when they have memory loss such as being diagnosed with dementia. “And I encourage them to do so, especially, when driving at night or in unfamiliar surroundings, highways, and bypasses.”
For more than 90% of people with Alzheimer’s dealing with driving, their anxiety about driving is a good indicator that they should stop driving. Of course, there are those who are in denial.
Dr. Weisman takes a compassionate approach to assessing his patients and recommending whether or not to drive. He understands the loss of independence and the emasculating effects on male elders diagnosed with dementia who are no longer able to drive.
We can’t generalize about people’s abilities behind the wheel. Each person diagnosed with dementia or Alzheimer’s deserves an independent assessment.
Click to learn more about when one should stop driving after being diagnosed with dementia. This link is to the 2-hour Alzheimer’s Speaks Radio show.
For additional information on driving, click to visit The Hartford’s Mature Market Excellence website for informative articles.