“Hearing the news that you have to stop driving can be more devastating than finding out that you have been diagnosed with Alzheimer’s disease.” Dr. Mark Rapoport
Driving is a crucial link to the outside world for many older adults. Being licensed to drive and having access to a vehicle are associated with mobility and independence. Having to stop driving, by contrast, tends to be seen as losing a privilege; losing the ability to move about freely; and being reliant on others to meet one’s transportation needs.
While the feeling of loss can be significant, in some cases driving with dementia raises safety concerns to a point where driving retirement is necessary – both for the safety of the person with dementia and others on the road.
Attempting to balance the quality of life concerns of older adults with the safety concerns that driving with dementia can bring, Drs. Gary Naglie and Mark Rapoport are leading CCNA’s Team 16 in developing a program to support driving retirement.
According to Naglie, “it’s often very difficult for care partners and a person living with dementia to come to the shared realization that driving retirement is best. So we want to develop a program that facilitates decision-making around this. Equally important, we see a huge gap in terms of the support that is provided to people after they have decided to stop driving – not only in terms of alternative transportation, but also the emotional consequences of this major life decision.”
To that end, Team 16’s CCNA project will help people with dementia and their care partners to answer the following questions:
Is there anything about how I drive that raises red flags about my safety to continue driving?
How do I maintain mobility and independence after hanging up my car keys?
What does the decision to stop driving mean to me, personally?
Education is thought to go a long way in easing the transition to driving retirement – both in terms of raising awareness about alternative transportation and helping to develop a transportation plan to meet individual needs. For example, the decision to retire from driving might be easier to make after one considers just how much it costs to maintain a motor vehicle. Drawing focus to the cost of gas, insurance, and vehicle maintenance helps an individual to focus less on what they are losing and more on what they may be gaining by hanging up the keys.
Although focusing on practical challenges and solutions can prove decisive for some, it is important to keep in mind that this approach is not all-encompassing, Rapoport explains. That is because the decision to stop driving engages an individual’s long-held beliefs about what it means to be independent and autonomous, not to mention the decision is set against a Western backdrop that privileges self-reliance.
“Change is very hard and threatening, so in addition to educational tools, emotional supports will be critical. The individual must learn to reframe what driving means to their life and maintain control over the decision before the control is taken away from them. Our program – to be successful – must support this,” Rapoport concludes.
In addition to a systematic review of the literature on easing the transition to driving retirement, the team is interviewing older drivers who have cognitive impairments and their care partners. This will help the researchers identify what impacted individuals think are important factors in helping to make the decision to retire from driving. Exploring this collection of viewpoints will ensure that the team is developing a program that is person-centered. Once this information is synthesized, the team will consult with healthcare providers who have experience working with individuals with dementia and their care partners to learn their experiences and integrate important considerations into their program.
Once the team has developed their multifaceted program, they will begin evaluating its effectiveness through their stakeholder groups and networks, which will include: people with mild cognitive impairment or dementia, their family members, and health care providers (including physicians, occupational therapists, nurses, social workers, and psychologists who are involved in the care of people living with dementia and who have experience navigating the topic of driving and dementia).
Other organizations, such as the Alzheimer Society of Canada, Ministries of Transportation, and the Canadian Association of Retired Persons will be consulted to learn how this program can be applied at a broader, policy-level.
Interested in Participating?
People interested in helping Drs. Naglie and Rapoport to evaluate the intervention are encouraged to contact their research associate, Sarah Sanford. In particular, they would like to hear from people who have mild dementia and care partners of people with dementia. The researchers also welcome hearing from organizations or individuals with an interest in this topic, who would like to support the evaluation.
To Drive or Not to Drive?
Driving is a complex task – requiring a high level of attention, concentration, planning, judgement and responsiveness – that dementia can make more challenging to safely carry out. While many people avoid thinking about and talking about driving retirement, being prepared to broach the topic and having the appropriate tools to draw on will help families and physicians to facilitate decision-making around it. The program that Team 16 is developing will help people facing the decision to see that driving retirement does not mean the end of independence.