Welcome to Driving with Dementia

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I am a family/friend caring for a person with dementia who is no longer driving.  I am interested in:

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Dealing with emotions

The loss of driving is a major life event that affects both the person with dementia and you. Even after the person with dementia has made the transition to non-driving, you may both continue ot experience a wide range of emotions. However, emotions can be unpredictable and everyone is different. Although some people with dementia have very strong negative feelings about having to give up driving, others are accepting or relieved. Likewise, you may find yourself having both negative and positive feelings about it.

Recognize that driving fulfills various emotional needs

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 various aspects of  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
  • 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 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.
Cope with emotional impact on me
Whatever specific emotions you are feeling, you need to take care of your own emotional needs on an ongoing basis, not just the person with dementia’s needs. 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 like:

  • Loss, sadness, grief: regarding that no longer driving is one of many ways that the person with dementia will eventually lose their independence. Stopping driving may represent the loss of your dreams for the future.
  • Fear, anxiety: regarding how the person with dementia will get around and how everything will get done, as well as how to cope with both the person with dementia’s and your own emotions around this major life change.
  • Frustration, anger, guilt: regarding that, the transition from driver to a passenger was challenging and the person with dementia is experiencing intense sadness, withdrawal, anger, or blaming.
  • Discouraged, irritated: regarding that although the person with dementia has given up driving, they are in denial and feel that they should still be allowed to drive.
  • Overwhelmed: regarding the added responsibilities for all the driving; either you always have to be the driver or you have to make all the driving arrangements.

Be kind to yourself

Once you have identified what you are feeling—for example, sadness or anxiety or anger?—then to cope, don’t try to avoid the emotion by simply continuing as if you aren’t having these feelings. Instead, allow yourself to feel the emotion. For example, to heal feelings of loss, rather than denying yourself grief, 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.

Find new ways to maintain your activities and connections with friends
In addition to finding new ways to get around (e.g., public transport), meet with friends in your home, let others drive you, and the person with dementia to activities.

Don’t feel you have to go 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 might be able to provide valuable support.
  • Talk to your doctor or other health and mental health care professionals.
  • Communicate with other people who are taking care of a person living 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 organization (click here).

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 adjusting to no longer driving, empathy can help. Recognizing the emotions of the person with dementia 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 various aspects of their 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
Manage the emotional impact on the person with dementia

As a major life change, the loss of 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 are often part of dementia. The lack of insight into the dangers of driving with dementia makes it especially hard for the person with dementia 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

By understanding the range of emotions the person with dementia may be feeling, you will be in a better position to help them adjust to life without driving. 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. No longer driving may represent yet another blow in terms of their dementia diagnosis and that they will gradually lose many abilities. They may also feel a loss of pride in ownership that can come from owning a valued possession like a car.
  • Fear, anxiety: regarding what their life will be like without driving. For example, they may worry about how they will get around for not only practical reasons but for socializing and enjoying life.
  • Guilt: regarding that all the driving responsibilities now fall on others and that they are a burden to others. This may compound guilt they are already feeling regarding the help they are getting in relation to their dementia diagnosis overall.
  • Frustration, anger: regarding feeling that they no longer have any control over when they can come or go.
  • Embarrassment: regarding having to admit to others that they can no longer drive.
  • Agitated, irritated: regarding not being able to express their feelings as the dementia progresses or not fully understanding that they have stopped driving. They may just have a generalized feeling that something is wrong.
  • Denial: regarding they are no longer able to drive safely and it was time for them to give it up. This may be because they can’t remember unsafe driving incidents or lack of insight into their loss of driving skills. This can lead to insisting that they should be allowed to drive.

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 am as smart as I've always been.”
  • 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 leading to an improved state of mind.
  • Avoid saying anything that might come across like 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 health 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.

Here's what some family members have to say:

  • Remain patient. You may have to explain several times the reason the family member 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 that not driving isn't who they are and that driving them 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 and volunteering with the Alzheimer Society can provide opportunities to socialize and help others, restoring their feelings of self-worth. Also, work through this circle of support worksheet (click here) to help identify who else they can turn to for support. It was produced by The Hartford. 

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 them as well to be safe and happy.
Try this worksheet
Use this Not Going it Alone: Who can offer support? (click here) to help identify who can provide support. It was produced by The Hartford. After reviewing the worksheet, when you close the worksheet's web page, it will bring you back here.