Caregiving expert Teepa Snow discusses how to communicate with a loved one who has been diagnosed with dementia by better understanding their experience.
Leading caregiving expert Teepa Snow has studied how brain function changes after a dementia diagnosis and how understanding these changes can improve the ways families care for their loved ones.
- Snow often uses role playing to illustrate what a person with dementia is experiencing at each stage
- She suggests that understanding what is happening to your loved one’s brain and what they are thinking will improve the way you communicate
Being Patient spoke with Snow about caregiving techniques families can use to de-stress and develop stronger bonds with their loved ones.
Being Patient: You’ve coined the term Positive Approach® to Care. What does that mean?
Teepa Snow: People’s brains are dying. I can’t stop it! I can’t even halt it and in reality, I can’t slow down the death of brain cells—I mean I can’t personally. What I can do is help you use what you have left at any moment in time. So, if you have something left—I feel like it’s my job to work with you. I will not ask you for what you don’t have at that moment, whether it’s chemical or structural.
You may say to me, “Listen, I don’t know who you are.” “I’m your daughter. Who do you think I am?” is a natural reaction to that. Often, individuals feel like, how could you not know who I am? You may think, “Wow, you’ve lost who I am to you.” If someone says, “I don’t know who you are,” rather than reacting to it out loud, in your head think, “Wow, they’re lost in place and time so they’re not sure of me.” You can ask, “Do I look familiar or do I not look familiar to you?” They may say, “Well, you look familiar.” Think, “Well, that’s good.” You can ask, “Do I seem friendly?” That’s really important. They might say, “Well, yes, you seem friendly.” Now, you’re on two good things!
Ask, “Do you recognize my voice at all?” They might say, “Well, yeah!” Then add, “I’m somebody who loves you. My name is Teepa.” The person may say, “Oh, well that’s odd because my daughter’s name is Teepa, too.” What I have to understand if I’m really going to be with you and where you are in this moment is the idea that you’re doing this on purpose. In your mind, you see a keeper and it’s not me. I’m also named Teepa. But, I’m not that person yet because you can’t get to the memory that links me to me. So, I could say, “Wow that is interesting! Now let me ask you something—is she a good kid or does she get in trouble?” The person may say, “Oh, she’s great!” They still haven’t found me, but I must be willing to stay with the person and say, “That’s interesting! Is there anything that I can help you with while I’m here?” Let go of the idea that at this moment, the person is going to know who you are. It hurts, but to that person, it isn’t really important. In this moment, it’s really important the person understands who you are. You have to think, “Did I really come so that I can be with her for a little bit, even if I have to face the fact that she can’t figure out who I am? Can I let that part go and still be with them?” That’s a PAC.
Being Patient: Sometimes, even though a person has dementia and their memory is getting worse, their emotional intelligence appears to be right on cue. Your technique illustrates that people with Alzheimer’s can still feel emotions. If you were to aggressively ask, “You don’t remember me? I’m your daughter!” that would hurt the person, right?
Teepa Snow: Yes, they’d think, “You’re not my daughter! My daughter would ever act like that!” What’s happening is that your behavior is atypical for that person and it is because you’re so blown out of the water that they don’t know who you are. Here’s a reality check. You’ll need a timeout at some point. You’ll need somebody to go talk to about what the person just did: forgetting who you are. Your loved one didn’t do it on purpose, but at the same time, you’re not going to be able to let it go without processing that. Your brain took it and dealt with it at the moment because you get how important it is to be there for the person. But reacting won’t help them because even though you’re hurt, they’ll get hurt too, and it just makes it harder to do the things we need to do with each other. At that moment, the person is not going to want to take a shower with someone they don’t like, even if it needs to get done.
Being Patient: How much do we know about the emotional capability of a person who has Alzheimer’s? While it differs according to what stage they are in, what does research show about how much of a person’s emotional capabilities stay present? How much can they feel hurt or loved throughout the course of this disease
Teepa Snow: Now, this is where it gets a little tricky because it also depends on the type of dementia. In other words, what parts of the brain are being attacked? For instance, if a person has frontotemporal dementia—where the front of the brain and the temporal lobe are being attacked, they have a higher risk of losing the ability to have emotional connectedness because that’s mediated by the prefrontal cortex. So, I can’t show you what I’m feeling because I’ve lost a way of doing that.
I could say to you, “Well, I’m very sad about that idea that you don’t know me.” They may have difficulty communicating that they don’t know you. You can see that they are confused, but it’s hard to see the level of distress because they lost the ability to express it. Or in some dementias, like frontotemporal, I might not feel it. I’m not feeling emotionally the same way I would have because the part of my brain that allows me to feel emotions is actually being flattened. That flat affect is part of my dementia. But for Alzheimer’s, that’s not the case. They’ll say, “I don’t know why you’re so mad at me! Why are you mad?” And you’ll say, “Well, I’m not mad, Mom, I’m just frustrated.” They might add, “Well, you look mad—look at your eyes, look at how they’re all squinty at me.” Those affected by Alzheimer’s are very affected by visuals. They often have tunnel vision, making it difficult to see the big picture.
Being Patient: What is the impact of saying, “Oh, you really don’t remember that?” to someone with Alzheimer’s?
Teepa Snow: The part of the brain that’s damaged is the hippocampus—the hippocampus is the part that takes a piece of data, locks it in and then has it. So when they say to you, “What time is my doctor’s appointment?” and you respond, “four o’clock today,” they may add, “Oh, well I wish you’d said something about it!” You may say, “It’s on the calendar, Mom. We just had this conversation.”
That’s your cue to realize that if you’re going to be helpful, your loved one is missing a file cabinet in their brain that’s marked “What’s Happening Today.” And even if you went over it multiple times, you put it in your file cabinet again, you’ve been in and out of the file cabinet multiple times, your loved one has no file cabinet and can’t hold on to that memory. They just don’t have it! You and I use what’s called working memory and immediate recall. But that’s the part that they’re missing. They don’t have working memory; it’s getting shorter. Your loved one used to be able to remember five to eight—and then it was five—and then it was three—and now it’s just, there’s something about an appointment. You should confirm the receipt of the information by saying, “Oh, you’re wanting to know what time your appointment is?” You’ve got to slow it down because it pauses your loved one—it gives them a chance to realize you’re asking this question. You should also hold up four fingers when you say “four o’clock” because it gives your loved one a very strong visual cue. Put your hand up to your face, hold up four fingers and show it to her.
If we’ve been over it five or six times, then either she’s not got the file cabinet to put it in or she’s a little distressed about this thing we’re doing and that’s making it really hard for her brain to hold on to the details. Because this doctor’s appointment has her a little revved up and that says to you—know that I’m not getting anything in that cabinet until this appointment is over. I mean, it’s just not going to stick. So, what you should do is interject, “Hey Mom, I have a favor to ask!” Now, what happens when I say that with energy, what happened to you? Your whole brain went, “Yes?” because you’re ready to catch the ball.
You may say, “Would you do me a favor? I’m trying to remember back when I was a kid and you took us to the zoo. Do you remember which animals I seemed to like the best? That transitions your loved one from immediate recall to long-term memory, and stories your loved one told you about going to the zoo and the animals you liked. You have to use your memory of you and your loved one to find another place you can go and be together. This way, your loved one gets to be smart. Saying, “Oh, you don’t remember?” is a terrible reminder to your loved one they have this brain disease, and it’s anxiety-provoking for them. It’s like, “I can’t trust my brain. Oh crap, you told me that already. Why can’t I hold on to it?” So ask them about long-term memories they can hold on to.
Being Patient: Often, people with Alzheimer’s may become distressed when someone else is driving a car. Is that caused by their vision becoming distorted, and what is being a passenger in a car like for them?
Teepa Snow: If your loved one used to drive the car and cannot any longer, she’s been disempowered with her hands, foot and judgment, but she’s still in a front seat. So, at this point, her brain is damaged enough that visual data is coming in, but her view of the world has gone from taking in large amounts of data to small amounts of data. So, stuff is streaming by her really quickly and if she looks at it, then she loses it. So, she then looks at the front; it’s like stoplights and she’s thinking, “Oh no, it’s coming really fast” because she got distracted for a few seconds. If she tries to isolate one object or one thing, then her brain goes, “Oh no, but you’re supposed to pay attention to the front.” Because that’s the rule and she doesn’t have anything to control; there’s nothing. And she’s panicking. She’s always been in control, so for her to look away from the front to you, she’s thinking, “Oh my God, I’m going to lose it!” She doesn’t have a way to stop anything from happening other than yelling. What is being triggered is the primitive brain’s desire to be safe.
Being Patient: What is the impact of employing the same strategies over and over again on caregivers?
Teepa Snow: Well now all of a sudden, caregivers are empowered, too, because they can change the direction. So rather than answering that question 16 times after the first five, caregivers now have a way to move themselves and their loved one out of that place. The idea that caregivers have ways to chill their loved ones down empowers them because otherwise, their loved one’s emotions are coming at them.
The caregiver’s brain may become triggered by their loved one’s distressed brain, but yelling doesn’t help because then the two of them end up in distress. Instead, caregivers can take their loved one’s hand and give it a little pump because it releases oxytocin. They can say, “You know I love you, right?” Then, they can put some music on that their loved one likes to sing along with and sing together. Their loved one’s brain will go from visual input to auditory input. All of a sudden both of them will become less stressed out.
Being Patient: How should caregivers deal with the early stages of Alzheimer’s when they may feel like they need to start acting like a parent to their parent?
Teepa Snow: Well, one of the things I think we should do is to establish baselines on ability. We need to make that a conversation so that we can start checking things regularly without having to go to some official person. For example, you can use animal fluency as a quick check. You can say, “Hey Mom, let’s name as many animals as we can think of and I’ll keep track of the time so we can record it. How many did you get? Let’s listen! Wow, 50! Well, Mom, you are amazing. Let me try.” We each do it and then six months later, we do it again. What we shouldn’t see is a huge shift in numbers—we shouldn’t see a decrease.
If you do notice a change, you may need to have a critical conversation with your loved one. At first, you might’ve thought, “I think those lapses in memory are pretty normal, ”or maybe not normal, but you know it’s not a problem yet. But if we haven’t opened the door for that kind of, “Mom, what do you think about how your brain has been doing lately? Do you think it’s still great? You’re not sure? Or are you worried?” conversation, it may become difficult later. If you say, “Let’s do our animals again” and notice that this time, instead of listing animals, your loved one says, “Why are you asking me to do this?” you may need to go see a doctor. Your loved one may get defensive or be hiding something. You may say, “So, Mom, you think you should go see a doctor? We shouldn’t do this anymore? Wow, this is really different for me. You know to tell me about what’s going on for you because I’m concerned that our relationship has shifted a little bit because you’re seeing me as getting bossy. I didn’t mean to be bossy. I was trying to do the things we’ve done before.” Then your loved one may add, “I know, but I don’t want to do it anymore.” You can say, “OK, you don’t want to do it. Talk to me about that.” So, in other words, I think we skip the step of talking about the first shifts when your loved one either does or doesn’t have awareness of the changes in their brain, and that’s in the prefrontal cortex. Either, your loved one does have awareness of their shift and is anxious because they notice it and want to talk about it, or they don’t.
Being Patient: What is the best way to handle a loved one with dementia becoming paranoid that someone is in their home while they are sleeping or stealing items?
Teepa Snow: Say, “They stole your clothes? Well, that’s not good!” Notice, the first thing I did was validating your concern. The first thing I need to do is hear the words and the concern you’re expressing. Say, “Wow! Somebody came in the house and stole things? Well, that’s not okay. Tell me a little more about that.” So, the next phrase is “tell me more about it” because I actually want them to let out fear or the anger or whatever it is. I need to hear a little more of what their brain thinks happened. I want to know how far away I am from what my loved one is thinking in that moment.
Say, “So, you think somebody came in and took all these clothes out of the closet and put them in suitcases? Wow, that is really weird that somebody would do that. I wonder what they were thinking about taking everything and putting it in the suitcases? Well, Mom, I am so sorry that happened. That should have not happened. I’m going to hang these clothes back up.” You might add, “Let me see what I can do about it. Could you give me a hanger? Great! Here, let’s get these hung back up now.” What I didn’t do is say, “Mom, let’s be real, you’re the one who took them. I don’t know why you’re taking everything out of the closet. I want you to explain that to me. Why are you taking things out and putting them in suitcases? Don’t do that!” I’m letting go of that idea because her brain doesn’t remember packing those clothes, hiding those clothes, taking those clothes and putting them somewhere. Her brain thinks clothes have been stolen because she thinks she’s in another place and time. She’s in a different part of her life, where I had different clothes in the closet, and somebody came in here and replaced all my good clothes with these clothes. Her brain actually thinks somebody’s trying to trick her.
Being Patient: If you had a camera installed and you could prove that nobody entered the house, is that good visual reinforcement or would that be upsetting?
Teepa Snow: It’s history and history you can try. But then what will tend to happen is, “So, nobody came in here? Why did I think someone came in here? What’s wrong with me? Why am I thinking this stuff? Am I losing it? Are you going to put me somewhere because there were not people in my house?” Because some people with Alzheimer’s do have awareness. When I realize I cannot actually remember something, then I see it on camera it’s like, “How could I have done that and not remembered it? I can’t trust myself.” Now, if the person can’t trust their own brain, they think, “Whose brain can I trust?”
Being Patient: How can you help a loved one who is nonverbal and seems sad and distressed find some peace?
Teepa Snow: Let’s go over to the side of the brain that still has auditory input, but it won’t be language. So, I want to start where she is. If she’s making sounds like, “Oh, oh,” then the first thing I want to do is take her hand in a hold that’s called hand-under-hand. It’s really powerful because it takes it and puts pressure on it. Our hands are both free, but we’ve clasped our hands and it causes stress reduction. You might mimic the sounds, positively singing, “Oh, oh, oh Mom.” Now it really helps to know some of the songs that gave her comfort and rhythms that were comfortable and comforting to her. So, for my mom, it would have been, “Oh, oh, oh, dear what could the matter be?” And I pick up the rhythm. My mom literally would open her eyes, smile and start humming along. Even though she was “nonverbal,” I had to find the right way to open the window because the door didn’t work anymore. Finding my way in requires both patience and assurance. I can come along, pick up a rhythm and then transform it into something that’s upbeat up energy, rather than downbeat down energy. But I have to start with whatever she gives me, and I’ve got to be willing to be where she is to help her come out of that place where she’s stuck.
Being Patient: What do you think about the permanent treatment of dementia patients with neuroleptics?
Teepa Snow: I think what we have done is create prisons for people and we can either chemically restrain them or physically restrain them. Sometimes we do both, because quite honestly there are a lot of locations that claim to be dementia care facilities or organizations, but they actually don’t do much training. They don’t have much skill and they don’t employ much skill. I think we as a society or a nation need to say, “You know what? People living with dementia deserve better. They actually deserve to be cared for by people who have been trained to do this thing called dementia care.” It’s not rocket science, but there is a science and an art to it. People deserve better than what they’re getting.
We often use medications to dull people down so that they feel less and respond less, so that they react less. So, we can get away with stuff that we shouldn’t be doing. Because you or I wouldn’t tolerate it. But, because someone has dementia we indicate, “It’s because they have dementia, they act like that.” If I just walked up to you and started to pull your dress up saying, “I’m going to help you get changed,” you’d feel embarrassed and try to push the person away or your dress back down. And then I’d tug your dress up and you’d pull your dress down. And then I’d call a second person to hold you so that I can get this done. In any other situation, that’s an unacceptable way to treat a human being. Except when people have dementia, we allow these things because, well, “I can’t get her to do it.” I get that, but there is a way to get her to do this that does not require her to feel like we’re abusing her.
If I have my hands with your hands and we’re both pulling it up, your brain goes, “Oh, pull my dress up. Well sure, I know how to do that.” Because I’m not right in front of you blocking you, it doesn’t feel like an attack. Instead, it feels like you’re doing it and I’m here to support you with additional help. Because they have ocular vision, they can’t take in this much data. Then, I’ve eliminated the threat and the person can do it. So, there’s a lot of potentials; we just aren’t realizing potential.
Being Patient: What should caregivers do to maintain their own health?
Teepa Snow: I try to do things in sets of five because people can hold on to five things. The first is, you’ll need enough sleep. If you’re not getting decent sleep, not getting enough sleep or you’re finding your sleep is being interrupted, that’s a very high risk for emotional distress. Getting sleep really matters. The second is don’t be a lone ranger. We have to get out of this lone ranger business, and we’ve got to form connections. We’ve got to reach out and find people who will support us. I’m going to tell you that out of every five families, four of them fall apart before this disease is over. Very frequently, the people you think are going to be your supports are not your supports. So, you’re going to need to reach out for somebody who does support you. You need support, you need somebody to go to. When I said not to react to me when I say, “I don’t know who you are? What are you doing here?” you can respond to me, but then you need a place to go and grieve the loss of your mother. You deserve that support. You’ve got to get it so when you come back to me, you’re not carrying the baggage of that loss of me because I’m right here.
The third is that you’ve got to look at what’s stressing you out. Either learn some new things that are helpful or let go of some things that you’re not able to do and ship those off to somebody else. Let go of things you’re not feeling particularly skilled at.
Then focus on what you’re eating and drinking. Because invariably, we start to shortchange ourselves and we get empty and we eat for comfort. Or we don’t eat at all and we drink because, I’ve got to stay awake, so I’m drinking more caffeine. Or, I’m drinking something with sugar in it. I’m really getting into bad habits of eating stuff that’s not good for me.
The last is I need to get out and exercise. I don’t mean a hardcore wear myself out, but I need to get out and see things that give me pleasure. Hear things that give me joy. I need to give myself permission to get recharged. And it needs to be in an active way. Not in a passive way. Yes, that’s fine, rest a little bit, but we need to get out and get moving. We need to engage in a way that gives us that boost that brings us back energized for the work you do.