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Having discussions and managing emotions

Initiating the topic of driving cessation early, even prior to a potential diagnosis of dementia or at least at the earliest manifestation of any cognitive symptoms, helps the person with dementia as well as their friend/family carers to gradually prepare for cessation. Starting a dialogue early also helps establish that driving cessation is an ongoing discussion.

Regardless of whether your assessment indicates that the person with dementia is in an early stage and will eventually need to stop driving or whether they need to stop driving immediately, it is essential to address practical issues, as well as to validate and manage their unique emotional needs. It is equally important to ensure that you recognize and manage the many ways that the driving cessation process can be emotionally challenging for you.

Many people with dementia and their family/friend carers report that driving cessation has a huge impact on their emotional lives, which is often not acknowledged or addressed by their healthcare providers. This neglect can compound the emotional turmoil they are already experiencing.

Research indicates that healthcare professionals often overlook emotional responses due to a narrow focus on practical considerations and because they do not know how to address the emotional aspects of driving cessation. To make sure you provide support for both practical and emotional issues, take an individualized approach that incorporates the following strategies.

Introduce the topic of driving cessation early

Although dementia is often only recognized in moderate or severe stages, initiate the topic of driving cessation with older patients/clients and their family/friend carers prior to a potential diagnosis. This gives them the chance to gradually adjust to the possibility that one day, due to health conditions, they may no longer be able to drive. Broaching the topic early also helps pave the way for keeping the discussion going. An ongoing dialogue allows you to address both practical and emotional concerns as they naturally arise.

  • Strategy in action:
  • Geriatric Psychiatrist: I think one of the things is if you see a patient early on. And this is probably more so in the case of primary care providers rather than specialists but it applies to us a little bit too, is often when you see a person at the early stages of mild cognitive impairment where probably they can still keep on driving, it should be one of the items that’s discussed. You should be discussing things like getting a power of attorney, making sure your will is in place and to say to them that this is a condition that at some in time you will no longer be able to drive and that’s not today but you need to begin to plan for that day. And at that point in time they’ve got a little more insight into it.
Frame driving ability as a health issue

Frame driving ability as a health issue by incorporating discussions about driving into routine health maintenance. Explain that there are many health issues common in older adults that can negatively impact driving. This approach allows you to cover a range of topics in a natural and non-threatening way including:

  • Progressive nature of the dementia and its impact on driving.
  • Alternative transportation options and ways to keep the person with dementia mobile and socially engaged, especially for those who live in rural areas.
  • Strategy in action:
  • Geriatrician: I think it’s very important in terms of framing that it as not an age issue. It’s about looking at health concerns. Similar to physical problems, the cognitive ones are also important to acknowledge as a reason to at least consider an evaluation of driving. So, I think that’s a really helpful point that we often sort of emphasize to people.
Facilitate collaboration and shared decision making

Research indicates that people with dementia want to be involved in planning and decision making about their driving cessation journey. Creating an atmosphere of respect and helping them maintain a sense of independence by “having a say” can go a long way in facilitating collaboration and shared decision making to the extent possible.

Bringing carers into the discussion can often further help foster collaboration. When you explain the risks associated with dementia and driving, as well as how driving cessation impacts quality of life, family/friend carers may become more empathetic towards the concerns of the person with dementia. As a result, family/friend carers may be better prepared to have ongoing discussions and support the person with dementia as they transition to driving cessation. It is important to be careful when navigating confidentiality issues and potential tensions between the person with dementia and their family/friend carers.

  • Strategy in action:
  • Occupational Therapist: It’s a bit of an art… there’s no cookie cutter… For me it’s about listening, about figuring it out. When you’re talking to them, you’re asking questions and they’re answering you, you get a feel for where they’re at so then it becomes a little easier to push my luck here a little bit... In OT land I always think the front door may be locked, but there’s got to be a side window… You just keep gently looking. You keep trying to find that way in where you can make that connection and try to get them to realize, even if it’s just a seed.
  • Geriatric Psychiatrist:Family members are a mixed group. Some recognize the concerns and are concerned about it. Sometimes they are the source of the push to have the person assessed. And sometimes it's even more challenging though when you have a family member, say like a spouse, who is reliant upon that person for their transportation needs. And so, they say that the person is a good driver and you're being unreasonable in taking away their license.
Be direct, honest and a good listener

Build trust by being direct and honest and by attentively listening to the person with dementia and their friend/family carers’ situation and challenges. Use your judgement to assess whether it would be helpful for you to take on the role of “the bad cop” (i.e., the one sharing the bad news) as a way to preserve family relationships. Similarly, depending on your location, consider positioning your province’s driving authority as “the bad guy” by explaining your legal obligation to report unsafe driving.

Communicate effectively

To validate and help manage the emotional impact on everyone involved, including your own, try these approaches for facilitating effective communication.

  • Draw on other best practices: Discuss driving cessation in the same way you would discuss other sensitive topics like discussing end-of-life care or communicating a diagnosis of cancer.
  • Use scripts: Anticipate and prepare for possible reactions, by rehearsing and reviewing written or mental "scripts" prior to initiating discussions about cessation with the person with dementia and/or their family/friend carers.
  • Convey statistical data: Incorporate statistics into discussions to emphasize or illustrate the risks of driving with dementia and the importance of cessation.

Watch this leading educator in dementia, Teepa Snow, recommend strategies for how to talk to a person with dementia who is reluctant to stop driving. Also, in this video, she advises on what not to say.

In addition, in the video below a healthcare professional uses a range of techniques to help communicate effectively with the person with dementia. 

 Source: Dr. Anna Byszewski

  • Strategy in action:
  • Primary Care Physician: I went to a workshop once on breaking bad news, which everybody thought would be about cancer. But the example they used was about disclosure of a recommendation to not drive. So the strategies to start and continue the conversation, you could almost use that breaking bad news framework or model.
Use planning tools to ease the inevitable transition

People with dementia want to be part of the cessation process and family/friend carers require assistance from healthcare providers. Accordingly, fostering an approach that emphasizes early planning for cessation, whenever possible, allows everyone a chance to adjust to the inevitability of cessation. An emphasis on planning also promotes ongoing communication providing you with continuous opportunities to manage the therapeutic relationship. Encourage an inclusive and supportive approach by using the following planning tools directly with the person with dementia or by recommending them to their family/friend carers.

Agreement and video

As a way to broach the topic of planning ahead for when the person with dementia can no longer drive, consider recommending these resources:

  • Agreement with my Family about Driving produced by The Hartford. It is an agreement that outlines the person with dementia’s wishes regarding when they can no longer make the best decisions about driving for their safety and the safety of others. It also acts as a helpful reminder if the person with dementia doesn’t remember that they are not supposed to drive anymore.
  • Video produced by the Alzheimer’s Association of a woman with dementia planning with her family for when she can no longer drive.

Warning Signs Checklist and video

Presuming the person with dementia does not need to imminently stop driving, you should advise family/friend carers to directly observe the driving of the person with dementia and monitor them for warning signs. They cannot rely on the person with dementia to recognize when their driving is unsafe. However, for family/friend carers to provide valuable information, they need to directly observe the person with dementia driving in the recent past. Recommend these resources:

Alternative Transportation Plan

Driving is certainly a convenient way to get around, and yet it is not the only way. To help ensure that the person with dementia is still able to get around and is as independent as possible, work with them—or recommend that their family/friend carers work with them—to develop an alternative transportation plan. It’s important to involve the person with dementia so that they feel respected and have a sense of control. Follow these steps:

1. First, identify all the things the person with dementia likes to or needs to do on a daily, weekly, monthly and yearly basis like grocery shopping, socializing, going to the gym, birthdays and anniversaries. To help, download one of these worksheets produced by The Hartford or recommend them to family/friend carers:

2. Next, brainstorm ways to get errands done without driving. For instance, the person with dementia may be able to change certain routines. Instead of visiting the bank, the family/friend carer could set up automatic bill payments. Other ideas include:

  • Meal delivery services (e.g., Meals-on-Wheels)
  • Delivery services and online ordering (e.g., groceries, prescriptions, books, newspapers)
  • Services offering home visits (e.g., hairdressers, doctors, laundry pick-up)

3. Then, brainstorm ways for the person with dementia to continue doing the things they like to do without driving. However, keep in mind that relying too heavily on just one family/friend carer to do all the driving or make all the driving arrangements, can be highly stressful and should be discouraged. Instead, try to share the driving responsibilities by using different forms of transportation.

Using a variety of driving options also decreases the person with dementia’s isolation and expands their social circle. Beyond family and friends, possible transportation options depend on the person with dementia’s specific situation such as whether they live in an urban or rural area. Ideas include:

  • Family and friends
  • Members of a place of worship
  • Carpooling
  • Public transit - but if the person with dementia tends to get lost, they need someone to take them to the transit option and meet them at their destination.
  • Taxis and ridehailing (e.g., Uber, Lyft) - but if the person with dementia tends to get lost, they need someone to meet them at their destination.
  • Community organizations that offer driver services
  • Retirement residences with van service
  • Delivery services and online ordering (e.g., groceries, prescriptions, books, newspapers)
  • Services offering home visits (e.g., hairdressers, doctors, laundry pick-up)
  • Meal delivery services (e.g., Meals-on-Wheels)

4. In addition, share these alternative transportation options for the province or territory where the person with dementia lives.

Transportation Cost Calculator

To help allay anxiety around costs associated with alternative travel options like taxis, recommend this transportation cost calculator produced by The Hartford. Once the costs associated with owning and operating a car are factored in—such as gas, repairs, and insurance— many people with dementia and family/friend carers are surprised to learn that it may be less expensive to just rely on taxis/ridehailing.

  • Strategy in action:
  • Primary Care Physician: We often talk about using family members, trying to problem-solve. Going through some education about if you don't have a car and you're saving the amount on insurance, then that can be put toward the taxi, and you can still save money, that kind of thing.

Input from authority figures

Explain to family/friend carers, that in addition to healthcare professionals talking to the person with dementia and/or giving this letter to them that is provided by the Regional Geriatric Program of Eastern Ontario, other authority figures may also be helpful in reinforcing the cessation message. For example, a religious leader, the family lawyer or a familiar police officer.

Last resort strategies

If nothing else is working, advise family/friend carers to:

  • Park the car in a location that is not immediately visible to the person with dementia.
  • Gift the car to a family member as part of an agreement that the family member will provide a certain number of drives, or assist the person with dementia in selling the car.
  • Place the car keys in a location that is not visible or use a steering wheel lock.
Manage the emotional impact on you

It’s important to recognize that you may face numerous challenges while facilitating the driving cessation process. In particular, it can be especially stressful managing reactions and tensions that may arise between you and the person with dementia and/or their family/friend carers. Ideally, the communication and planning tools described above will help lessen the emotional impact on the person with dementia and their family/friend carers—and in turn, this should also help mitigate the emotional impact on you. Here are some additional strategies you can try to lessen the emotional strain.

Promote positive patient interactions
  • Motivate yourself to broach the cessation topic early and ongoing as a part of regular health maintenance by recognizing that this should help avoid severe negative reactions if cessation does become warranted.
  • Don’t pressure yourself to make every cessation discussion perfect. The specifics of each situation are unique and as a result, some exchanges will go more smoothly than others. If an interaction goes badly, just schedule another appointment and try using a different approach.
  • Redirect some of the person with dementia’s negative reactions by explaining that, depending on your location, you are legally obligated to report unsafe driving. 

Liaise with other healthcare professionals
  • Draw support from primary health care professionals: They can relate to the long-term nature of the patient relationship and may have suggestions, as well as also benefit from sharing experiences and releasing stress by expressing issues.
  • Consult with specialists if you are a primary care provider : They recognize the importance of maintaining the therapeutic relationship between the patient with dementia and their primary care team and accordingly, may be able to play "bad cop" and take on some of the reporting responsibilities, shouldering some of the emotional impact.
  • Contact the professional malpractice provider for medical/legal issues for support and guidance (e.g., Canadian Medical Protective Association, Canadian Nurses Protective Society). For wellness, if you are a physician, contact the Canadian Medical Association for additional strategies and resources. Occupational therapists are encouraged to access health and wellness plans that are offered by their employer.

  • Strategy in action:
  • Geriatric Psychiatrist: I never mind getting referrals from family doctors who want me to help them with driving assessment because sometimes I can make the report that allows them to preserve their relationship with the patient. I know how hard it is for older adults in Canada to get excellent primary care and I want to do anything I can to preserve that relationship between the primary care physician and the patient. So, if I have to play the role of gatekeeper or "bad cop", then I'm pleased to do so.
See research highlights and resources

Here are some opportunities for additional learning: