As caregivers coping with the spook-house corridors of the dementia patient’s mind, we often find ourselves saying the wrong thing: “Mom, how could you have possibly forgotten your own daughter’s birthday!”
Where do comments like this come from? Frustration? The subconscious desire to will our patient back to rational thought? When we slip and say something like that, the anxiety builds and often we are left with an explosion of a reaction that can take hours to recover from. If only we could have taken a deep breath, thought it through, and said something a little different.
I recently had the opportunity to speak with Teepa Snow, MS, an occupational therapist specializing in dementia who has both an independent practice and clinical appointments with Duke University’s School of Nursing and UNC-Chapel Hill’s School of Medicine.
As we talked, I couldn’t help but think—if only my family and I had known some of her surprisingly simple and rational methods for coping with dementia patients, surely some of those interactions with my father during his long battle with Alzheimer’s would have been better—for him and for us. As frustrating as this disease is, there are indeed things to be learned which can allow us to care for the people we love in a more compassionate and understanding manner.
Q: Teepa, thank you for speaking with me. Let’s start with the “don’ts.” How do most people living with dementia NOT want to be treated?
A: What they hate the most is when people treat them as if they are stupid, because they are not stupid. It’s brain failure, not stupidity. When somebody has dementia they immediately pick up on when a caregiver starts acting bossy, or pushy, or “I’m right, you’re wrong.”
Q: Why is this such a common mistake?
A: Most family caregivers’ experience is having helped children develop skills. And so when someone is losing skills, rather than gaining them, there’s this real difficulty understanding what is going on. I—the patient with dementia, that is—am still “me.” I’m not turning into a child. So, it’s a real mistake to start thinking that you can treat me like I’m five years old and I’m going to go along with it.
Q: What are some other mistakes that caregivers make?
A: They ignore the early signs that something is happening. They try to make light of the situation when I make a mistake. And when I say something like, “I can’t,” it means I’m really struggling. It doesn’t help when the caregiver jokes, “Mom, what are you doing? Getting old or something?” The real problem is that the caregiver isn’t ready to hear the real problem, so it gets easy to push it under the rug and not do anything about it.
Q: What other communication blunders are most common?
A: Another issue is when family members talk in front of me like I’m not there. I can pick up on that stuff. Again, the point is, I’m not stupid. And no one likes to be treated as if they are stupid—whether they have dementia or not. But dementia removes some of the pre- frontal cortex control and so I am more likely to blow up or get angry, sad, or distressed when somebody treats me like this.
Q: Speaking of talking, I remember feeling extremely uncomfortable—at a loss for words, hurt, even a little angry—when my father would say something out of the blue. Once he said to my young son when we had come to visit him, “What are you doing here? Where are your parents?” And my wife and I were standing right behind him. What can you say to that?
A: The best technique for when they ask you a question and it sort of surprises you is, instead of answering the question, just repeat some of the words they give you. So if they startle you with, “Have you seen grandma lately?” —and let’s say, she’s passed away—you should take a deep breath and repeat back, “Oh you’re looking for grandma, yeah.”
Q: That’s to give me a chance to compose myself?
A: Right, it gives your brain a chance to catch up. And you might say, “Well now, did you need to ask her something or were you just looking for her?” And by doing that you can figure out what prompted the question, rather than trying to answer it. It allows you to learn more when the question seems odd to you without upsetting them.
Q: Anything more on the communication front?
A: Another good thing to do is to get into the habit of introducing ourselves by name and not by relationship. It gives us a chance to pick up on the idea that the person may or may not know that it’s us. So I might say, “Hey it’s Teepa,” as I walk in the house, rather than, “Hey mom!” “Mom” can be confusing, since it implies a relationship, and relationships are sometimes hard to grasp. Announcing yourself by name means she’ll be less likely to get confused and lash out with “What are you doing in my house?” It helps her to know who I am and connect dots without feeling stupid.
A: Caregivers commonly put their hands on the patient too much. An example that I use sometimes in my classes is—have you ever come out of the bathroom and you’ve forgotten to zip your zipper? Would you ever expect a good friend to walk up and try to zip your zipper? Of course not! I’d expect a good friend to say (whispering), “Teepa, I think you might have missed something.” When the family takes over too much, even for the most compassionate reasons, it becomes the I’m-the-boss-of-you kind of thing. While the patient may not be able to articulate his stress or shame, he can certainly feel it.
Q: What about distance caregiving for a relative with Alzheimer’s or dementia?
A: It’s really hard because often when you are a distance caregiver you come episodically and it’s hard for you to see what’s actually going on day-to-day. When you show up the patient’s brain gets excited. And when her brain gets excited she performs differently than she normally does. And so the people who are around all the time are saying, “she’s really having trouble. She’s gotten lost twice,” and you come—the drop-in visitor—and the patient stuns everyone by acting almost fine. For example, she might blurt out, “So how’s my grandson at Tulane doing? Is he still getting good grades?” And you’re like, “Wow, she’s really with it. What are they thinking?” When you’re not around on a regular basis, those short visits can be deceiving.
Q: What else?
A: When you come you do the parachute thing—where you try to jump in and fix everything at once because you have to leave again—you get into speed-demon time. And if there is anything that’s really not good for someone with dementia it’s trying to go too fast. And so, long-distance caregiving is probably one of the most stressful situations to be in.
Q: Some final principles?
A: Be respectful of space. Start each interaction with a smile and some friendliness. Don’t make assumptions that the person will remember her relationship with you or the things you’ve done together. Slow down a little bit. Give the person a chance to get connected to you and to want to be with you, rather than be forced to be with you. She’ll be more comfortable, and your life will be a lot easier.
Teepa Snow is an Occupational Therapist with 33 years of experience. She travels the country training and consulting for agencies, facilities, and families, sharing better methods of caring for those with dementia. For more information, go to her website here.
This is part one of a Two Part interview with Teepa Snow. Click here for the continuation of this interview in which Snow breaks down the effects of dementia on the five senses.
Steve Slon is the editorial director for The Saturday Evening Post. He is the former editor of AARP The Magazine.