Preserving Autonomy against the Odds

When the doctor diagnosed my mother with probable Alzheimer’s, he also told her, “I want you to stop driving.” He said her reflexes and judgment weren’t good enough.

By that point in her disease, my mother had trouble following conversations, so when we got to the car she asked me, “What did the doctor say?”

“He wants you to stop driving.”

She was outraged. “If I can’t drive, I might as well be dead!”

I wasn’t surprised she felt that way. Driving a car meant independence to her, as it does to so many people. It meant doing what she wanted when she wanted and not having to depend on anyone else.

Autonomy—freedom, choice and being in control of our own lives—is one of our most valued human rights. Naturally, we resist when we feel we might be deprived of it.

My mother had only mildly resisted the restrictions I asked of her during the previous year—not driving at night and letting me pick her up rather than making the half-hour trip to my house. But the idea of a total ban on driving was a different story.

For weeks I tried every argument I could think of to convince her to follow the doctor’s orders, but she clung to her right to drive.

Then, by chance, her car battery went dead. She could see that her car wasn’t working, and so, without objection, she allowed me to drive her in my car.

I made no move to have her car fixed and, to my astonishment, after a couple of weeks of not driving, she seemed to forget all about it.

Not every family is so fortunate. More often, driving remains, for a long time, a central focus of people’s struggle to hang onto control.

Two tactics are often suggested to try to influence people to stop driving: cite an authority like the doctor or have them tested at a driver-rehab site to prove they are not fit to drive. The trouble is, even if the person stops driving, this doesn’t put an end to the matter because it doesn’t address the real problem—being deprived of control.

Driving is usually the first right we actively take away from people living with Alzheimer’s disease.

Caregivers are trying to act in the best interests of their loved ones and the public. But people forced to stop driving feel disempowered. This sets the stage for a battle.

Indeed, even though my mother appeared to forget about driving, she seemed not to forget that something had been taken from her. After that, she challenged everything.

How can caregivers handle the problem better? There is no magic bullet. It’s a big advantage to get a diagnosis early. That way, people with dementia can be full participants in planning for the future while they still have a good understanding of the facts. They and their caregivers can prepare for a gradual reduction in driving, tailored to whatever problems arise. If they tend to get lost, perhaps they can agree that they will drive only with someone along to give directions. If they have slower reaction times, they can drive only on quiet streets. Both of these are temporary solutions, of course, but they are more respectful than an immediate ban.

Caregivers need to make sure their loved one’s input is part of the solution, so that it is truly a joint agreement. 

I know full well that this doesn’t always work. Some people may resist getting a diagnosis, as my mother did, until beyond where negotiation can succeed. And those who have always needed to be in absolute control are certainly not going to value that less when their ability to be in control is slipping. Others—diagnosis or not—deny there is anything wrong with them, so there can be no discussion.

That’s why it’s so important to support their sense of control in any other way you can. It may help release their grip on driving.

In addition, any way you can demonstrate to people with Alzheimer’s that you will work with them, rather than against them, will pay enormous dividends down the road.

They are going to need an ally to help them maintain some sense of being in charge of their lives because, tragically, as Alzheimer’s progresses, it threatens people’s autonomy in myriad ways:

  • Control is making your own decisions, but it’s hard to make decisions if you can’t recall the choices available.
  • Autonomy is solving your own problems, but you need the ability to plan and sequence to imagine a solution.
  • Success requires focusing your attention, but if you can’t filter out competing stimuli—noise, people, anything that catches your eye—you can’t concentrate.
  • Choice means making your wishes understood, mostly using language, but language eventually fails in people living with Alzheimer’s disease.

With all those obstacles hindering the people we care for, we can easily slip into taking over, deciding for our loved ones, doing for them and guessing what they want. When we’re exhausted and stressed, that seems like the easier way out.

But if we foster their sense of control in just a few areas, we not only support their autonomy, we create an environment that has less stress for them and, consequentially, for us.

Here are some of the things we can do.

We can eliminate distractions to improve their focus. People with dementia always do better in quiet environments without clutter.

We can help them make decisions by not asking open-ended questions like “What fruit would you like?” Instead we can show them an apple and a banana and say, “Would you like an apple?” extending the apple, “or a banana?” moving it forward. Further along in the disease, we can help them choose by giving them a reason to make a particular choice, such as a blue sweater rather than a red one. We can say something like, “You always look so pretty in blue.” They will still have the feeling that they made a choice.

Even asking, “Would you like to sit in this chair?” allows for alternatives that “Sit here” does not.

If we make the assumption that they can do something, rather than that they can’t, we empower them. For instance, we can help them solve problems by engaging with them about the problem, eliciting their ideas and showing respect for their opinions.

We can preserve their sense of control by giving hints rather than commands. My mother would get angry if I reminded her to wash her hands. If I turned on the water and gently guided her toward the sink, she got the idea “on her own” to wash her hands.

Even when their language becomes impaired, they still have ideas to communicate. If we are present, focus our attention and listen well, we may understand. If we pay attention to the feeling behind the words, we will understand even more.

It’s little things that support a sense of control, rather than erode it. It’s the same little things that nourish our relationship, which endures long after the last vestiges of control have faded away.