Welcome to Driving with Dementia

Æ

I am a family/friend caring for a person with dementia who is still driving. I am interested in:

Sections

Dealing with emotions

It's important to recognize that the person with dementia's ability to keep driving affects both of you. It's common to experience a wide range of emotions that can be unpredictable, and everyone is different. Although some people with dementia have very strong negative feelings about giving up driving, others are accepting or relieved. Likewise, you may find yourself having both negative and positive feelings about it. 

Giving up driving can be very emotional because driving fulfills different needs for different people. As a result, giving up driving can have a serious impact on the person with dementia's sense of identity and self-worth. For example, driving can be connected to numerous aspects of their identity and lifestyle such as:

  • Sense of freedom, independence, and control
  • Work and livelihood
  • Friendships and other forms of connection like attending faith services
  • Roles like taking care of a spouse, children, or aging parents
  • Enjoyment like a drive in the countryside
  • Pride of ownership (being able to afford and maintain a much-loved car)
  • Feeling youthful

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, I can 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 a bus coming every half hour.

You need to take care of your own emotional needs on an ongoing basis, not just the needs of a person with dementia. Try these ideas:

Pay attention to your emotions

Loss of driving is just one of the many significant transitions you may face as the person with dementia’s disease progresses. You may feel like you are on an emotional roller coaster. To cope, it’s important to recognize that it’s normal to experience a range of emotions such as:

  • Loss, sadness, grief regarding the person with dementia’s inability to continue to drive safely. In the bigger picture, it’s a reminder that they will eventually lose their independence. Stopping driving may represent the loss of your dreams for the future.
  • Fear, anxiety regarding how to cope with the emotions of the person with dementia and your own emotions around the transition to no longer driving. In addition, fear about the possibility of the person with dementia getting into an accident and hurting themselves or others. There is the fear of the accident itself as well as the fear of being blamed for not having prevented it.
  • Frustration, anger, guilt regarding how the transition from driver to a passenger is going, especially if the person with dementia has responded to the idea of no longer driving with denial, intense sadness, withdrawal, anger, or blame.
  • Discouraged, powerless regarding the person with dementia’s insistence on continuing to drive.
  • Overwhelmed regarding the added responsibilities, of having to do all or most of the driving or, if you do not drive, having to make all the driving arrangements.

Be kind to yourself

Once you have identified what you are feeling—for example, sadness, anxiety or anger—then to cope, don’t try to avoid the emotion by simply continuing on as if you aren’t having these feelings. Instead, allow yourself to feel the emotion. For example, to heal feelings of loss, be kind to yourself by allowing yourself to grieve. Signs that you may be experiencing grief include:

  • Physical signs of grief include shortness of breath, dry mouth, tightness in your chest, difficulty sleeping or lack of energy.
  • Behavioural and emotional changes that may be indicators of grief include crying, restlessness, misplacing items, confusion, disorientation, or worrying.

Don’t feel you have to go it alone

Far too often family/friend carers take it upon themselves to meet all the transportation needs of the person with dementia. But they should not have to do it alone.  Identify people in your life who may be able to provide support. For example:

  • Connect with family members.
  • Reach out to friends who have been there for you in good times and bad.
  • Consider whether any of your neighbours, co-workers, and/or faith leaders may be able to provide valuable support.
  • Talk to your doctor or other healthcare professionals.
  • Communicate with other people who are taking care of a person with dementia through in-person support groups or online forums.
  • Use this circle of support worksheet (click here) to help build a support network. It was produced by The Hartford.
  • Contact your local Alzheimer Society (click here) organization. They can provide support and resources. 

Here's what some family members have to say:

  • Talking to someone about my side of the situation when I had to become the only driver, and thus the only person to do all the errands, grocery shopping, business, etc. It's a huge load for any one person.
  • See if you can have other family members or friends take your family member with dementia out for coffee, lunch or to sporting events or maybe a movie from time to time. Just to give yourself a break.

Try to be empathetic

If you are finding it difficult to handle how the person with dementia is reacting to the idea of no longer driving, empathy can help. Recognizing their emotions can increase understanding of their situation. Driving fulfills different needs for different people. As a result, giving up driving can have a serious impact on the person with dementia’s identity and self-worth. For example, driving can be connected to numerous aspects of identity and lifestyle such as:

  • Sense of freedom, and independence
  • Work and livelihood
  • Friendships and other forms of connection like attending faith services
  • Roles like taking care of a spouse, children, or aging parents
  • Enjoyment like a drive in the countryside

As a major life change, giving up driving can lead to a range of emotions even for people without dementia. For people with dementia, reactions can be even stronger due to poor memory and lack of insight that is often a part of dementia. The lack of insight into the dangers of driving with dementia makes it especially hard for them to appreciate the limitations being imposed. Also, their emotions may change over time. To help the person with dementia cope with the range of feelings they may be experiencing now—or in the future—try these ideas:

Anticipate a range of emotions

Not only is it common for people with dementia to experience a range of emotions with regard to giving up driving, sometimes their emotions can be so strongly negative that it prevents them from agreeing to stop driving. In other cases, people with dementia may recognize that their driving abilities are declining and they are at ease with the decision to give it up. Sometimes they may even feel relieved because they find driving makes them anxious.

By understanding their feelings you will be in a better position to help them stop driving, as well as to cope with their emotions. Try to relate to what the person with dementia is going through by recognizing that typical emotions include:

  • Loss, sadness, grief regarding whatever driving represents to the person with dementia—for many, driving means independence and self-sufficiency. Giving up driving may also represent yet another blow in terms of their dementia diagnosis and the fact that they will gradually lose many abilities. This may include a sense of loss regarding pride of ownership as they lose their much-loved car.
  • Fear, anxiety regarding what their life will be like when they can no longer drive. For example, they may worry about how they will get around for not only for practical reasons but also for socializing and enjoying life as well.
  • Guilt regarding how giving up driving may inconvenience others. This may compound the guilt they are already feeling regarding the help they are getting in relation to their dementia diagnosis overall.
  • Frustration, anger regarding a sense of what they perceive as no control or no say about stopping driving. They may think that they aren’t being treated fairly, which may be intensified due to the nature of dementia and inaccurate memory and insight.
  • Agitation, irritation regarding not being able to express feelings as the dementia progresses or not being able to fully understand what’s going on, just being left with an overall, generalized feeling that something is wrong.
  • Embarrassment regarding having to admit to others that they are no longer able to drive safely.
  • Denial that they are no longer able to drive safely. This may be because they can’t remember unsafe driving incidents or they lack insight into their loss of driving skills. This can lead to stubbornness and a refusal to stop driving.

Here's what various emotions may sound like:

  • Denial: “This isn’t happening to me…. I can drive just as well as I ever could.” “I'm as smart as I always was.”
  • Anger: "Why is this happening to me? This is not fair. How am I supposed to get our groceries?” “These tests they did (to test my driving skills) were silly and childish” “What do these doctors know about me anyway?”
  • Bargaining: “I’ll drive more carefully if you let me keep my license..”  “I won’t drive on the highway, only to the church or grocery store.”
  • Depression: “My life is over.”
  • Acceptance: “If you help me with the bus schedule, I’ll give it a try.”

Source: Alzheimer Society of Ottawa and Renfrew County

Acknowledge emotions

No matter what emotions the person with dementia is experiencing, an effective way to help them cope is by acknowledging and validating what they are feeling. For example:

  • Help them identify what they are feeling (as needed) and encourage them to talk about what they are going through.
  • Listen with empathy and show that you understand their feelings by providing reassurance with comforting words.
  • Encourage them to face painful feelings like sadness and loss rather than avoid them. This often helps people process their feelings and leads to an improved state of mind.
  • Avoid saying anything that might come across as if you are denying or discounting their feelings.
  • Encourage them to talk to other supportive people in their life, like family members and friends as well as their doctor, other physical and mental health care professionals and faith leaders.
  • Suggest they contact their local Alzheimer Society for support and resources. 

Overall, creating a trusting relationship and open dialogue will help the person with dementia cope with their emotions.

  • Try these tips (click here) for starting the conversation about driving risk and making it an ongoing discussion that is positive.  

Here's what some family members have to say:

  • Talking about it is good to dispel feelings of frustration and loss. It's a big thing to give up driving after a long time. It signifies a big change and can be very difficult.
  • Remain patient. You may have to explain several times the reason the family member with dementia can't drive.
  • Allow them to be back seat drivers. Be patient when they tell you how to drive. Let them be part of the experience.
  • Assure your family member with dementia that not driving isn't who they are and that driving them to places is an opportunity to spend time together. Do not make them feel that it is a chore. Assure them often of your unconditional love.

Find new ways to maintain purpose and meaning

To help offset the loss of identity and purpose that the person with dementia may be experiencing, encourage them to try new activities. For example, attending adult day centres or volunteering with the Alzheimer Society can provide opportunities to help others and restore their feelings of self-worth.  

Here's what some family members have to say:

  • She gave her car to my niece, which made her feel helpful and was a way for her to give up driving with dignity.
  • Let them know they are doing the right thing for the community at large, and for themselves as well to be safe and happy.

Use this circle of support worksheet (click here) to help build a support network. It was produced by The Hartford.

See how a family/friend carer handles a person with dementia’s emotional reaction when the conversation about giving up driving does not go well.

 
Source: Alzheimer's Association