Driving and Dementia Roadmap assists doctors

As dementia progresses, it will inevitably become unsafe to continue driving. At the same time, ceasing to drive can result in a loss of independence for many older adults, making the decision to stop driving a difficult one. To address these challenges, we have developed the Driving and Dementia Roadmap (DDR). This brand-new website resource was created for people living with dementia, caregivers of people with dementia and healthcare providers, with unique portals for each of these three groups. For people with dementia and their caregivers, there are separate sections for those who have stopped driving and for those who choose to continue to drive. This unique resource provides information, videos, worksheets, and other tools to help navigate decisions surrounding driving and dementia. Among many other topics, the DDR helps users understand how dementia can impact driving; identify when it becomes unsafe for individuals living with dementia to drive; and how to adjust to life without driving once the decision has been made. Developing the Driving and Dementia Roadmap As specialists who work almost exclusively with older adults, we have been grappling with the issue of driving and dementia for most of our careers, trying to find credible resources to support patients and families with the decision to stop driving. We are pleased to share that an evidence-based solution is now available to the public. The DDR was developed in an iterative process involving systematic reviews and qualitative research. This work led us to develop a driving and dementia intervention framework that includes addressing practical as well as empathetic elements of driving cessation. Practical components include information about the risks associated with driving with a dementia diagnosis, information about risk factors and warning signs, communication strategies, and advanced planning for mobility. Emotion-focused features include addressing the impact of driving cessation on relationships, crises and conflicts that can develop, as well as loss and grief associated with this major life transition. We have assembled available resources and tools, and curated them with content generated by web developers, graphic designers, and copywriters with experience in developing educational content for people with dementia. Throughout the process of developing the DDR, individuals living with dementia, caregivers of people with dementia and healthcare providers provided input and feedback that allowed us to tailor the website and make it applicable for real-world use. This resource was made possible thanks to funding from the Canadian Consortium on Neurodegeneration in Aging, the Canadian Institutes of Health Research, the Centre for Aging + Brain Health Innovation, powered by Baycrest, as well as the Ontario Ministry of Health Academic Health Sciences Centres Alternative Funding Plan Innovation fund. Addressing emotional challenges The decision to stop driving can be emotionally charged for many. Most people with dementia are older adults who have decades, and in some cases more than half a century, of driving experience. The car is a symbol of convenience, independence and competence, and is viewed by most as a necessity for mobility, community participation and tasks outside the home. However, as dementia progresses, individuals can lack understanding of the nature and severity of their cognitive impairment and its potential impact on their driving abilities. Furthermore, because of challenges with memory, they may forget when information is shared by their family or concerned clinicians. Since people with dementia have generally intact long-term memory in the early stages, they may remember having excellent driving records, and often find it baffling and sometimes irritating when family members and physicians raise concerns about their ability to drive safely. In addition, there are many adverse consequences of driving cessation for individuals with dementia, including functional decline, reduced social engagement, depression, general health deterioration, and even an increased risk of institutionalization and death. The DDR can support users in addressing these risks when considering driving cessation. For family members, challenges related to driving for people with dementia can be equally fraught. Telling a parent about their concerns regarding one’s driving safety reverses the natural order of the parent-child relationship. Spouses also have a difficult time expressing these worries, often because they rely on their spouse for their own transportation needs. This issue is challenging for clinicians as well. Disclosing to someone that it is no longer safe for them to drive, while important for their well-being, can jeopardize the relationship between the doctor and patient, which is the core of clinical medicine. As well, it typically evokes emotion-laden discussions that are difficult. The DDR provides resources to address these factors for all those involved in the decision. The DDR provides suggestions and strategies for coping with the emotional impact on the person with dementia and their family caregivers, helping them acknowledge the impact and strategize new ways to maintain purpose and meaning after stopping to drive. Practical tools In addition to addressing the emotional components of driving cessation, the DDR also includes numerous practical resources, including links to provincial legislation about medical reporting, videos on approaching discussions about driving cessation, decision aids to clarify the decision-making process of when to stop driving, and worksheets facilitating developing alternate transportation plans. Although many older adults are safe drivers, all international clinical practice guidelines indicate that people with severe and moderately severe dementia are unsafe to drive. For those living with mild dementia, it may be safe to continue to drive for some time. However, it is very difficult to know when driving has or will become unsafe. For clinicians, the DDR provides stepwise suggestions about assessing fitness to drive in people with dementia and resources for clinicians to help evaluate an individual’s safety to drive based on research, guidelines, and best practices. The DDR presents strategies for having difficult discussions about driving cessation with patients and their families, including particularly challenging situations in which the person simply refuses to stop driving. One novel feature of the DDR is that there is also an emphasis on helping clinicians provide support to people with dementia after they stop driving. The DDR does not incorporate information from individuals and provide them with a recommendation to continue or stop driving. Patients and families are strongly encouraged to seek the advice of a qualified health provider. Empowering individuals living with dementia, their caregivers and healthcare providers The decision to stop driving following a diagnosis of dementia is far from easy. Our aim with the DDR is to empower older adults living with dementia, their caregivers, and healthcare providers to make difficult decisions that honour the individual with dementia while ensuring everyone’s safety. We encourage clinicians to use this website for their own benefit, and to share the link with their patients with dementia and their caregivers. Dr. Mark Rapoport is a professor and residency program director in the geriatric psychiatry division of the department of psychiatry at the University of Toronto, past-president of the Canadian Academy of Geriatric Psychiatry, and acting head of geriatric psychiatry for Sunnybrook Health Sciences Centre. His main area of research focuses on motor vehicle collisions associated with neurological and psychiatric illness in older adults. Dr. Gary Naglie is a professor in the department of medicine and the Institute of Health Policy, Management and Evaluation at the University of Toronto, and the vice-president of medical Services and chief of staff, chief of the department of medicine, and scientist at the Rotman Research Institute at Baycrest Health Sciences. His main area of research focuses on motor vehicle collisions associated with neurological and psychiatric illness in older adults.

Driving and Dementia Roadmap assists doctors

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