By Teepa Snow
My name is Teepa Snow, and I am a dementia care and education specialist. My personal mission is to better the lives of people with dementia—as well as the lives of their caregivers—by sharing what I have learned. An occupational therapist by training, I have been called "the horse whisperer of dementia."
It can be difficult, frustrating and confusing to care for a person with dementia. When frustration mounts, these five tips can help caregivers of loved ones with dementia cope:
When an interaction is not going well, you have a choice—you can push your agenda and watch things get worse, or you can step back and think. What's happening is often more complicated than it appears on the surface. In your effort to be helpful you may have created a problem. The person who is challenging you is doing the very best they can with what they have left. Stop judging them.
Learn to be a good detective. Your brain works better than theirs, so use it! Step back and assess their abilities. Know what you are working with.
Try to figure out what might be driving the person—what are you seeing, what are you hearing? What might be their unmet emotional need? Their unmet physical need?
Why might they be doing what they are doing? What are they trying to communicate? You need to try to see it from their point of view.
Respond (don't react)
What you thought would happen didn't happen. The person did not react the way you wanted (or expected) them to.You're getting frustrated and you're getting angry. What to do?
Stop reacting: Stop your behavior of trying to correct them. Stop pointing out "errors." Stop trying to fix things. Stop raising your voice, and stop pushing your agenda. "Remember, I already told you that" —do you find yourself repeating that sentence? It's time to stop! Don't argue with them.
What will be more helpful is to use the words they have given you. It's called reflective narrative language and it will support their ability to make connections. Repeat back to them what they have said to you— acknowledge and validate what they are feeling. It is not helpful to focus on who is right or wrong. But it is very often helpful to apologize (for whatever happened) and say: "I'm sorry this happened, or I'm sorry I upset you, I was trying to help."
Make plans, but expect them to change
Create a plan, think it through, and get organized. Have a schedule. You know what you want to happen. However, when it doesn't, you have to be flexible.
If your plan isn't working, you can't force it! It's part of your care agenda. Adjust your plans. It was just a plan! Figure out where to go, or what to do, instead. Having alternatives ready is necessary and helpful: Plan B, Plan C or even Plan D.
Figure out what you can (and can't) control
Stop trying to control what you can't control. This is so important to realize. You can't control their dementia or their past (who they've been or their routines and preferences that may now be exaggerated or problematic). And, you can't control/fix/change their behavior.
You do have some control, however, over their environment—the physical and sensory experiences including where they are, the objects they use or have access to, and how you guide or help to direct their time. Consider how you can make a difference for both of you.
Pay attention to what helps them feel valued and important, as well as when they relax and build energy. Try to prioritize the most important things and what needs to get done. Know your agenda, but don't show your agenda. And then recognize if/when it doesn't go as you'd have hoped.
You can figure out how to get yourself under control—and you can build your skills and knowledge about how to better live with dementia. Change what you can change and "Let Go" of the rest.
Take care of yourself
When it's not working—when something you tried to do didn't work, when you're getting frustrated or angry—you absolutely need to learn to take a time out. It's critical to step out of the situation. Take at least three deep breaths—breathe in and out, deeply!
When you are frustrated, angry, or in despair, the person you are caring for picks up on—and reacts to—your stress level and intensity. They may not understand what or why you are feeling as you do, but they will be impacted by your tone of voice, body language and emotional state. When you're angry, you're no good to them or to yourself.
Breathing deeply will help you get back to neutral, lower your emotional level, and help you regain perspective about the situation you are trying to problem solve. Also, don't hesitate to ask for help. Putting support systems in place for surprising times when living with dementia is critical. Dementia is hard work!