As an occupational therapist and driving rehabilitation specialist, one of the hardest tasks is to inform an individual with dementia that they can no longer drive. While it is a difficult conversation with any medically at-risk driver (a person, regardless of age, who has a medical condition[s] that may affect driving performance), the person with dementia is particularly challenging. Recognizing how dementia is different from other medical conditions that preclude individuals from driving is important for understanding and developing strategies to address this most valued activity of daily living.
This article covers three challenging aspects of this situation. The first, social isolation, is common to all who lose their ability to drive, while the other two are unique for those with dementia and/or the baby boomers.
As the majority of older adults live in suburban and rural America, driving is and will remain their primary mode of transportation. Additionally, driving cessation has adverse consequences, with social isolation a likely outcome for individuals living alone or without family or friends nearby.
Certainly, the COVID pandemic has heightened the awareness of negative consequences associated with limited social interaction, especially for those who have dementia. When an individual in more rural areas loses their privilege to drive, it effectively ensures they will be socially isolated, unless interventions are taken to maintain social participation.
‘Driving is not one skill, instead it’s a combination of many skills and abilities.’
However, those interventions must be initiated by others or prior to diagnosis, as individuals with progressive cognitive impairment will not have the capacity to problem-solve complex transportation solutions. Thus, providers should never stop with the cognitive test, but include an action plan for maintaining community mobility to preserve health and quality of life.
Denial About Ability to Drive
“I have been driving for 50 (or 60, 70) years! I can still drive.” This is the most common statement a person with dementia makes to the driving specialist. And it is absolutely true—they can drive. But driving is not one skill, instead it’s a combination of many skills and abilities. These abilities fall into three categories: operational, tactical and strategic.
At the base level are the operational abilities—the physical components of driving, which after many decades of driving become automatic. We can steer, brake and use controls without thinking much about it. It is the preverbal “riding a bike.”
The second level are tactical abilities, which includes executing maneuvers on the road, such as changing lanes, following road signs or slowing in response to traffic.
Strategic abilities mean making decisions like whether or not to drive, based upon conditions, or when a familiar road is closed, the ability to find another way home. While all three levels are important and may change with age, the strategic level is affected first when a person has changes in their cognitive ability. Thus, while the person with dementia continues to perform well at the operational and tactical levels, deficits at the strategic level can put them at risk. Moreover, the person with dementia does not typically recognize the loss of this problem-solving ability while they can still use the gas and brake pedals.
A Matter of Reputation
While motor vehicles have been around since the 1920s, it was not until after WWII that most families had a car. The baby boomers grew up with their vehicles and accordingly the “car” was their tool for social networking. It was a life-changing event to get a license for teens, and seen as their ticket to independence. Thus, it is important to recognize that loss of driving is not just a loss of transportation, but also a loss of choice and self-determination. These issues need to be addressed along with the issues of transportation. In addition, particularly for men, it also can be about the car itself.
My in-laws acquired a minivan with mobility adaptations. Because they had two additional cars and a truck, my father-in-law convinced my husband to buy his prized coupe—although nine years old, it only had 22,000 miles on it. While there were no transportation issues, a few months later my father-in-law bought a new coupe. It was his vision of driving a sporty vehicle that was important, not the method of transportation. Thus, it is a time of loss and so critical to recognize that loss may be profound for most individuals because driving is seen as a lifetime right, not a privilege.
It is universally recognized that for people with dementia, it is not a matter of “if” they will have to stop driving, but “when.” As the most complex of instrumental activities of living (IADLs), it should be recognized and addressed early in the planning process. Recent research suggests that deficits in driving performance may show the first evidence for dementia, even when typical neuropsychological tests are negative. Based on this research, practitioners should be addressing driving first, before other issues that are not in the domain of public safety. The worst scenario is ignoring the issue with the potential of a devastating event such as a crash or becoming lost for an extended time.
Developing a transportation plan early that incorporates family, friends and others spreads the responsibility to a network of individuals.
Interventions after these events are always more painful and often inadequate. Plan for the Road Ahead should become a “mantra” for all older adults, because research has shown we will all outlive our driving ability by six to ten years. Just as we plan for retirement from work and where we will live, transportation planning must be front and center. This is particularly true for those with cognitive impairment. It is critical to “try-out” strategies like ride-sharing early in the process so they become familiar.
Developing a transportation plan early that incorporates family, friends and others (including paid services) spreads the responsibility to a network of individuals. This plan will allay fears of the individual “becoming a burden” and loss of independence if developed collaboratively and early in the disease process. Finally, research has shown that individuals with very mild or mild cognitive impairment may continue to drive, although it depends upon a variety of issues such as context, environment and disease progression. Accordingly, it requires the skills and abilities of an expert in driving and in medical conditions to help make that determination. The driver rehabilitation specialist who is also an occupational therapist is an ideal individual to determine fitness to drive. Alternatively, as driving is an IADL and falls within the domain of occupational therapy, a comprehensive evaluation of IADL skills by an occupational therapist, which is typically covered by insurance, is another option to pursue.
Anne E. Dickerson, PhD, OTR/L, SCDCM, is a professor in the Occupational Therapy Department at East Carolina University in Greenville, editor of Occupational Therapy in Health Care and directory of ROADI (Research for Older Adult Driving Initiative.