People experiencing dementia are losing the ability to use recall, which, when combined with rational thought loss, makes decision making increasingly difficult. To make a choice, we must first bring to mind the available options. Next, we grade the options for such things as preference, availability, maybe easiness or cost – all while still retaining each possibility in our minds. All this happens in a second or two, but going through the process is necessary every time we want to exercise choice.
Think, for instance, of what you might do when lunchtime draws near and you begin to feel hungry. Assuming you recognized hunger (a skill often lost in dementia) and decided to eat lunch, then headed for the kitchen, you need to know where to find your options. We see our clients gradually lose the knowledge that cupboards open or that they contain food. They eventually stop recognizing refrigerators, too, or when they look inside they see cartons and containers but fail to see them as sources of food.
Memory and rational thought losses have a tremendous impact on decision making. How can we help our clients retain autonomy for as long as possible?
Make options visible. Putting clothing or food out where your loved one will see it is a great way to help him or her exercise choice. We lay out items of clothing on the bed in the order they should be put on, then offer help only if necessary. When clients start losing understanding of packaging and cupboards, we set out fruit and snacks on the counter, or put a cold meal under clear plastic on a plate at the table with a beverage in a cup, so that when they walk by both food and drink are visible and they can choose to eat, or not. Eventually more help will be needed, but making objects or options visible is an effective way to extend autonomy.
Use either/or questions. Avoid using open-ended questions. When you ask someone, “What would you like to do?”, you are asking them to use rational thought and memory in the manner I described above. They must bring to mind options and evaluate them. The kinder thing to do is to present the options in either/or style. “Would you like to eat here or go out?” could be followed by, “Okay, out sounds good to me, too. Which sounds better – sushi or a hamburger?” Then, once in the car, another option: “We could get hamburgers at Wendy’s or Zip’s, your choice.”
Eventually, selecting from two options will become too much. At that point, put the item you think they would most enjoy at the end of the sentence. So, if you know they really enjoy sushi, ask whether they’d like to go for “hamburgers or sushi.” The last word heard will be more likely to elicit a response. And, the time will come when it’s best to offer only one choice: “Would you like to go out for sushi?”
Keep in mind that although the memory and rational thought losses of dementia take away the ability to consider options and exercise choice, the desire and need for control over our lives and bodies remains intact. As caregivers, we should be actively looking for ways to preserve and enhance our loved ones and clients’ sense of autonomy. After all, when someone feels powerless, the quickest way to regain a sense of control is to refuse to cooperate and, without rational thought, refusals often put safety at risk.
Enhancing our loved ones and clients’ ability to exercise choice and feel autonomous is another way we can show them love and respect.