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. In a previous discussion, Snow breaks down the do’s and don’ts of caregiving for people with dementia.
In the second part of the interview, which follows, Snow describes dementia’s devastating impact on each of the five senses. Grasping the nature of the decline of the brain is a vital part of understanding—and better managing—our relationships to those with diminished mental faculties.
Q: What is the most basic misconception about dementia?
A: That it is a failure of memory. In fact, dementia is brain failure, not memory failure. And it affects all five senses. We rely on our senses to process external information from the world around us. But with dementia, each of the senses is reduced. And, just as with congestive heart failure, or kidney failure, this brain failure is a matter of degree. It’s not an all or nothing thing.
Q: How can a person simulate the diminished senses for themself in order to become a better, more understanding, caregiver?
A: Let’s start with the sense of sight. Dementia causes people to lose part of their visual field. The brain can’t handle all of the data and they are less aware of peripheral vision. I recommend that caregivers put on binoculars and walk around the room. See how hard it is just doing that! Notice that you cannot see objects that are close to you, so if somebody touches you from the side, it will startle you.
Q: And for hearing?
A: People with dementia are hard of comprehending, not hard of hearing. So talking louder makes you sound angry, or it makes you sound like you are trying to be bossy. Here’s an example of what speech sounds like to a person with dementia: “Early in the … people are missing … out of four …. How long would … take before you … lost?”
Q: Sorry, could you repeat that? I didn’t catch the last part.
A: Yes, exactly! I left out every fourth word. The full statement is: “Early in the disease people are missing one out of four words. How long would it take before you were lost?” I have students write down what they want to say to somebody and then mark out every fourth word, and realize how hard it would be to keep track of a conversation if people only used words.
Q: How can the caregiver overcome this dilemma?
A: They can add visual cues to the words. So if they say, “do you want something to drink?” and do a drinking motion near their face—or hold up an actual drinking glass and pantomime drinking from it—then my brain goes, “Oh, drink! Yes, I’ll take something to drink.” So it doesn’t matter where I got it, through the visual or through the auditory. I got it! And so we can still communicate.
Q: How should caregivers combine sensory cues when beginning an interaction?
A: Get in front of the person at a distance so that they can see you and say, “Well hey,” or “Hello!” And spread your arms wide to indicate, “I want to hug you, is that ok?” You give them that visual cue, and the person will either open their arms and say, “Well, hey sweet heart!” and want to hug back. Or they might ask, “What are you doing here?” In which case, now you have your early warning of—uh, oh, not a good moment.
Q: What then?
A: She doesn’t know I’m her daughter and she’s not necessarily going to want a hug from this stranger who is approaching. Picking up on the cue, I’ll say, “Well hey, it’s Teepa.” And now I’ve given her an auditory signal to go with the visual. And she may say, “Teepa, you know I have a daughter named Teepa.” Now in that moment I’ve got a choice. I can go with the flow and say, “You do have a daughter named Teepa, yes!” Or I can say, “Mom, it’s me!” In which case, now I’ve made her wrong and me right. And now we have potential to fuss back and forth. The manner in which our interaction starts is very important.
Q: Is there another effective way to say hello?
A: The other way to greet is to put a hand up near your face and go, “Hi”, like you would if you saw somebody down the road whom you wanted to say hello to. And then offer your hand in a handshake. Because what you are saying there is, “Will you let me come in and will you let me touch you?” And if the person responds in any way, obviously they saw you and acknowledged you and now they are ready for your touch. So you are getting permission before you lay hands on someone. And once you lay hands, keep your hand in a position where it’s a palm touch, which people are much more comfortable with than a finger tip touch.
Q: How can we simulate what happens to the sense of touch?
A: With touch, I’ll have people put on binoculars again. Then I’ll try to guide the person quickly around the room. The reaction is, “Woh, woh, woh—don’t do that!” If you don’t feel stable on your feet and somebody starts moving your upper body, it’s really going to scare you and it’s going to make you angry because you feel like they are trying to hurt you. Remember to combine senses and only touch after a warning.
Q: What about smell?
A: Dementia causes people to lose protective smell. They don’t get the danger of smoke, for example. There’s not the warning, ding!, that goes off from the smell of smoke. They might try to light a match with the smell of propane in the air. Another smell they might not pick up on is spoiled food. So they put something in the refrigerator and because of the memory issue forget they’ve put it in there, and it’s in there for days. Then they pull it out and leave it on the counter for a couple hours because they forget and they go do other things. Then they find it and go, “oh, egg salad sandwich. That’ll be good.” So food poisoning is serious danger. Other smells that they may not pick up on are body odor, urine and feces. So, caregivers need to be a lot more tuned into danger signs when it comes to smell. In a friendly and non-condescending manner we need to present them with safe alternatives.
Q: Finally, how is taste affected?
A: They keep bitter the best, but sweet and salty tastes are reduced. They have to super-sweeten to get their sweet and they have to salt more to get the salt taste. Sweet and salt aren’t good things to have a lot of if you’re diabetic or when you’re hypertensive, but, because your taste buds are duller, you’re actually craving it more. And because you don’t have good impulse control, you’ll tend to overdo it.
Q: What’s the best way to handle these cravings.
A: Well, the common response is, “Mom, you’re putting too much sugar in there. You don’t need that much sugar in there!” Or, the patient may say to her daughter: “You can’t cook. This recipe tastes crappy. Why did you do that? I gave you a good recipe and you made it taste terrible.” And the daughter of course says, “Mom, it’s your recipe.” All this can lead to is an unproductive argument. In reality, there’s no need for an argument, if the caregiver understands that what is happening is not a battle over a recipe, but a radical change in the patient’s sense of taste. In many situations, we think that we are having a problem with each other, but in actuality—the brain is dying. Remember that.
This is Part Two of a two-part interview with Teepa Snow. Click here for the first part, in which Snow describes the most common mistakes caregivers make with dementia patients.
Steve Slon is the editorial director for The Saturday Evening Post. He is the former editor of AARP The Magazine.