Caregiving Tips from the ‘Horse Whisperer of Dementia’

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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:

Step back

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!

Teepa is an occupational therapist and dementia education specialist who works closely with dementia specialty service providers to develop and optimize programs and services to people living with dementia, their care partners and family members.

Visit: Positive Approach to Brain Change

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37 Comments

This all sounds good but is much easier said than done., and certainly doesn't always fit the situation.

I don't think that you can just assume they are "doing the very best they can with what they have left.". Very often these people never did the "very best" for any purpose but their own, all their life. Why assume they at doing anything other than controlling you to get what they want, their way, without any recognition of what is humanly possible or how it is affecting anyone else, just like always ?

Knowing what I'm working with usually means realizing I'm dealing with someone who is inconsiderate, unreasonable, totally self centered, rude and demanding; the needs of whom have totally obliterated my life. Stopping our behavior of trying to correct them, often means stopping trying to get them to be civilized, sentient beings. or even being tolerable. Often it would mean stopping keeping them safe.

As for raising your voice, that's obligatory for deaf dementia people who refuse to wear a hearing aid. Modulating my voice to exactly match his level of deafness is not really possible. You have to shout to be heard. You have to shout louder if they don't hear. It is impossible to know the moment you pass the point at which they can't hear, and enter the point at which they just won't listen and then on to the point at which they get more agitated. It's just not possible.

Repeating back to them "Help me, help me." several hundred times would serve no purpose, even if they could hear, and listen. Especially when you already have done everything humanly possible for them, and are currently standing at their side, providing for their needs at that very moment. While they continue to shout.

But I do totally agree with the last idea. Sometimes you have to stop what you're doing and step back. Eventually step way, way back and hand them off to someone professional. Dementia care facilities can be life savers. I know the one we move my Dad to has definitely saved my life, health and sanity. (The difficulties definitely don't stop, but you'll stop wanting to shoot yourself to make the misery end.)

For Cornerstone12: I totally understand your comment about sentences that make no sense. When they develop the inability to use the right words, the frustration is intense. My Dad often used the wrong words for items he wanted. Said "ribbon" when he meant blanket, said "handle" when he meant kleenex. If "hose" had meant the water spigot, it would have been easy, but often there was little connection between what he said and what he meant." Eventually he started saying "whichimacallit" for almost every word in the sentence: "You whichimacallit have to whichimacallit that whichimacallit in the whichimacallit right now.". Was followed by intense anger and agitation when I didn't respond immediately. (That was a direct quote BTW.) Sometimes it was just impossible to decipher, but that didn't stop his demanding I do whatever it was he wanted, right NOW
Teepa, great advice for all! As soon as we start trying to correct, try to reason with them, yell at their gibberish or even try to make sense of it, then it is time for professional care most likely in a facility. Redirection is the most effective, and if at first you fail, back away, then try again.

I saw Teepa in Denver about a year ago. When others have the opportunity do not miss it, very educational and entertaining and sad at times.
Good article, good advice but maybe not humanly possible all the time...and unfortunately we are human. I get exactly what GayleV is saying. It is hard to believe that sometimes my Mom isn't just "acting" to get my reaction. She was in rehab after a fall and the aides there said her attitude would get worse when I visited. Now she is home again and doing okay but she still pushes buttons when she can. My reaction to her behaviour goes from frustration to despair very quickly. She can be perfect at times and impossible to deal with all in the same day...or morning...or hour. I am fortunate to have two brothers that also help out. The brother that ignores her has no problems. The other brother does his best to help her and they are always arguing. So don't try to reason with the dementia, I get that...but since I am the only daughter she says I am the only one who understands...but I don't.