Welcome to Driving with Dementia

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Recognizing challenges

Driving cessation poses unique challenges for everyone involved; challenges for the person with dementia and their family/friend carers, as well as for their healthcare professionals, as they facilitate the driving cessation process. At the heart of these challenges is trying to balance safety concerns with preserving the independence and sense of identity of the person with dementia.

This website addresses many of the following practical challenges. It also provides strategies regarding the emotional challenges, which can strain or ruin the relationship with healthcare professionals. 

Practical challenges:

  • Limited educational opportunities and resources 
  • Limited evidence validating tools to assess fitness to drive  
  • Lack of clarity around provincial and territorial requirements and processes for reporting unsafe driving 
 

Emotional challenges:

  • Apprehensive about raising the topic of driving cessation
  • Person with dementia and their family/friend carers may have intense emotional reactions 
  • Confidentiality issues
  • Tensions between people with dementia and their family/friend carers

Here's what healthcare professionals have to say:

  • Geriatrician: "I think something that I struggle with still is the in-office assessment tools, so, what are good tools to use, and how you interpret the results, and what their shortfalls might be? I think that’s a big important part that people really struggle with.
  • Primary Care Physician: "I find talking to people about their licensing very difficult, and one of the hardest things I have to do.
  • Geriatric Psychiatrist: "If you don’t approach it right, that’s the end of your relationship with them as a healthcare provider because people with dementia forget a lot of things but they typically don’t forget the person who took away their license.
  • Occupational Therapist: "Because taking away a driver’s license or telling someone they’re not safe is, I think, one of the most independence breaking, and it really creates a lot of turmoil in people. The mental health of the practitioners is definitely impacted.
  • Practical challenges: The lack of alternative transportation is a common issue, especially in rural areas. This can lead to difficulties with essential activities like getting groceries and medications and going to appointments, which in turn can impact physical health. In addition,  if they are no longer able to keep socially active, it can negatively impact their emotional well-being.
  • Health challenges: There can be a range of negative health outcomes related to driving cessation including depression, increased cognitive and functional decline, as well as poorer general health. The risk of long-term-care placement and mortality is higher after driving cessation.
  • Emotional challenges: Driving is often a marker of independence that is tied to self-esteem, identity, and role. In addition, many people find driving enjoyable and have pride in ownership of affording and maintaining the valued possession of a car. Driving also makes it possible to make positive contributions and to connect with others. Driving cessation often leads to increased dependency on others, which can disrupt identity, as well as lead to increased social isolation, loneliness, and depression. In addition, the person with dementia may not realize or remember that their dementia is affecting their driving. As a result, they may not understand why they must stop driving. Overall, emotional responses for people with dementia are wide ranging including loss, sadness, grief, fear, anxiety, frustration, embarrassment, anger, agitation, and irritation.

Here's what some people with dementia have to say:

  • I've always loved driving. There's something about it. I love cruising down the road, on the highway, down the back roads and just looking. It's relaxing. It's therapeutic. When you get really upset or whatever, sometimes you go take a look at nature. You just drive to the park. Or you can just jump into the car and go visit.
  • It gives me freedom. I don't have to worry about somebody else taking me somewhere. If I want to decide to just go for a coffee with my girlfriends, I just get in the car and go.
  • It's just independence, especially rural. When you're living in the country in small towns you don't have the option of just every half an hour, the bus comes.
  • Practical challenges: Driving cessation can become challenging for family/friend carers who have to take on added responsibilities related to doing all of the driving, or having to making all of the driving arrangements. This can be especially taxing for those living in rural areas where distances are longer between destinations and alternative transportation options are fewer. Also, following driving cessation, it often falls to friend/family carers to keep the person with dementia both physically and socially active. The family/friend carer may be afraid to raise the topic of cessation with healthcare professionals for fear of how it may impact their own quality of life.
  • Emotional challenges: Feelings of loss, sadness, and grief are inevitable as driving cessation is a reminder of the person with dementia’s inevitable ongoing decline. In addition, throughout the cessation process as well as afterwards, family/friend carers may feel overwhelmed as they take on added responsibilities. For example, they may become responsible for all of the driving as well as helping the person with dementia maintain their purpose, roles and social participation. Family/friend carers may also feel frightened or anxious about how to cope with the emotional impact of driving cessation on the person with dementia. For example, if the person with dementia responds negatively or blames them, friend/family carers may feel frustrated, angry, and guilty. If there is ongoing resistance to cessation, they may feel discouraged or powerless. They may feel frightened that they won't be able to stop the person with dementia from driving. In addition to worrying about people getting hurt and feeling guilty, the family/friend carer may worry about being blamed for not being able to prevent the accident.