The following is a guest post by Drs. Gary Naglie and Mark Rapoport lead a team of researchers within the CCNA focused on driving and dementia.
“It’s like a double, a quadruple whammy. In addition to having to deal with this illness, they’re suddenly confronted with their license being taken away.” (Social Worker)
For many older adults, driving is a crucial link to the outside world and a form of independence.
While driving is clearly a danger for people with moderate-to-severe dementia, some people with mild dementia continue to drive safely for a period of time. The question a growing number of people with dementia and their care partners confront is: How long is it safe to continue driving?
The decision of whether to retire from driving is one of the most challenging and emotion-laden decisions that older drivers with dementia, their care partners, health professionals, policy-makers, and licensing authorities struggle with.
Driving is not a mere matter of getting from one place to another. We know this because retiring from driving can have a significant impact on the health and quality of life of older people and their families – including loss of independence and lifestyle, lower activity levels, social isolation, loss of self-esteem and identity, depression, and an increased burden on care partners.
“I never cease to be amazed at how strong the emotions are around this topic. It cuts to the core of what is, actually, the identity of a lot of people.” (Occupational Therapist)
“… The trauma of losing her vehicle…… was like losing a spouse. And so just like you have grief counselling for losing a spouse, you should have grief counselling for transitioning to non-driving.” (Adult daughter of retired driver).
Supporting Driving Retirement
Attempting to balance the quality of life concerns of older adults with the safety concerns that driving with dementia can bring, we’re leading the Canadian Consortium on Neurodegeneration in Aging’s Driving and Dementia research team in developing a program to support driving retirement.
We understand that it’s often very difficult for care partners and persons with dementia to come to the shared realization that driving retirement is best. 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. So we’re developing a program that facilitates decision-making and supports the transition to non-driving.
For this, our team has reviewed existing studies and consulted with interest groups and networks (healthcare providers, organizations, older adults with dementia, and their care partners) to understand what it’s like for persons with dementia to go through the decision making process, and how they continue to remain mobile and socially active after they stop driving.
We found that, in addition to addressing the practical challenges – such as finding alternative ways of getting around – there is a need to acknowledge and provide supports for the emotional aspects of driving retirement.
Based on these findings, our team has developed a Driving Cessation Decision-Making and Coping Framework and Toolkit (DCDT). This is a compilation of online and print resources and tools – including information, driving assessments, work sheets, and videos to support individuals with dementia and their family members in their decision making around driving retirement and their transition to non-driving.
To ensure that the DCDT is relevant and helpful in terms of its content and ease of use, we’re, again, consulting with the relevant groups and networks to have the benefit of their feedback and input. This will include getting the perspectives of service providers, drivers, and former drivers with dementia, and their family care partners who have used this resource.
The ultimate goal is to develop an effective resource base of tools that individuals can draw from as they face the challenges of deciding when to stop driving, and adjusting to their lifestyle post-driving. Our hope is that people will see that hanging up the keys does not have to mean the end of independence.