Ask Teepa Anything: Capgras, Hypersensitivity, Hallucinations, and Other Dementia Care Questions

Dementia care expert Teepa Snow is a certified occupational therapist with more than 40 years of clinical and academic experience. She regularly provides online and in-person education to support those living with neurodegenerative conditions like Alzheimer’s and other forms of dementia. In Being Patient’s “Ask Teepa Anything,” she fields dementia caregiving questions from the audience in real time.

Founder of Positive Approach to Care, Snow joined a Live Talk with Being Patient’s Deborah Kan and tackled questions from navigating moving a family member to hospice, to stepping into dementia’s reality when a loved one believes you are an imposter; purposeful activities to engage someone with cognitive decline, to addressing early signs of memory loss. 

Read on for some of the highlights of her advice or watch the full session below.

Being Patient: Is excessive itching a symptom you see in dementia patients? Do you know why loved ones in later stages might tend to get itchy?

Teepa Snow: There are particular types of dementia that are more prone to a sensory component. We want to remember there [are] two things: there’s itching, and then there’s scratching. You have the itch, and then you scratch the itch. 

The itch is a hypersensitivity on your skin. Your skin is a sensory end organ, and it has lots of sensors all over it. When hair fibers [on the skin] vary at all, [some people] feel it as an itch because they are getting messages of something going on.

“The itch is a hypersensitivity on your skin.
Your skin is a sensory end organ, and
it has lots of sensors all over it.”

It could be pressure sensors, it could be movement sensors, it could be temperature sensors, [or] it could be friction sensors. We have all sorts of sensors all over our skin, and what happens is you use another part of your body called your fingers, which are fairly sensitive. 

Classically, [you use] your nails because it gives you purchase. What you’re doing is a counter-irritant. There are lots of reasons you get those sensory responses. If they are on certain parts of your body, they can signal a drug reaction. If they’re on another part of your body, they could signal a build-up of bacteria or yeast infection. 

When it’s not coming from one of those, it usually is a hypersensitivity to some kind of sensory thing. A lot of people will start picking around their faces. That’s a very common place to be hyper-sensitive, and then start picking to the point where you get scabs, and then you pick the scabs.

[For] other people, it’s the forearms. They can be invested in their forearms. [For] some people, it’s picking the skin off their fingertips. 

[In] others, it’s parts of their body, the neck, the back, and [other] places, and it can be where you have somewhat dry skin. Sometimes, by really working on hydration and skin care, you can take it down. Other folks, we will look at putting things over so that there’s something to pick at. 

For instance, what I’ll try with some folks is take a sports sock, cut out a thumb, cut out the fingers of the toes, and then run it up inside out so you have all those nice little threads you can work on picking. Some people we have to look at, “Ooh, okay. The center core brain is getting activated [and] hypersensitive.” 

Lewy body [dementia] is usually the worst for it. Sometimes, vascular dementia can perk it up. Sometimes, anxiety increases the sensitivity of your skin. It’s almost like the flush you get in flight or fight. [Itching] tends to be places where the hands can spend time. It will be thighs, upper arms, forearms, or the face. If you watch the person, sometimes you can feel the intensity building up, and you can tell. 

Sometimes, you can have them do things that engage their hands and brains in such a way that they are taken away from the sensation. [This is] like nontraditional management of pain, where we do things that involve the body and the brain and trick it into not paying so much attention. Of course, when we quit, it’s back.

Being Patient: What do you do in a situation where a loved one with dementia also has Capgras syndrome? How do you manage this different reality?

Snow: When someone has Capgras, it’s where I look at you, and I know you’re you, but you’re not the right you – you’re an imposter.

“When someone has Capgras, it’s
where I look at you, and I know you’re you,
but you’re not the right you — you’re an imposter.”

It’s delusional thinking that there would be two “yous.” One you is a nice you, and the other one is a mean, tricky, [and] trying-to-kill-me you. In Lewy Body, it’s a very common symptom. We see it in the afternoon, more in the evening, in most cases. Some people get [it] in the morning. 

If someone has Capgras and they think you’re the wrong person, one of the best things you can do is have someone keep an eye or figure out a system for keeping an eye [on them and then] go away, put on a different shirt, fix your hair a little differently, and [come back and say,] “Hey.”

The person will go, “Where have you been?” It’s like, “I am so sorry that other woman was here again, and I don’t want her back here. I’m so sorry that happened. That shouldn’t have happened. I’m here now. Let me ask you something: are you hungry, or do you want something to drink?” Then, we’re moving on. 

I mean, I’m not going to fix it. What do I have, a brain repair kit? I don’t. That’s her reality. I always will go back and say, “Tell me how the morning went.” “Oh, it was an awful morning., I told her we [would] have to go to the doctors.” It’s like, “There’s the first [one]. That’s the one I don’t like. I like the [one who] is nice to me.”

“I’m not going to fix it. What do I have,
a brain repair kit? I don’t. That’s her reality.”

Being Patient: For a Lewy body dementia hallucination where the loved one has said someone is coming in, how do you navigate that?

Snow: [For Lewy body dementia], usually it’s visual hallucinations or disturbances: animals, children, or people, often doing things they shouldn’t be doing. It can also be delusional: thinking about sex, theft, or doing negative things. [It] might just be people around that shouldn’t be there. 

I say, “You’re seeing somebody. I am having a hard time seeing them. Describe them to me. What’s she wearing? Is it light-colored or dark-colored?” Sometimes, quite honestly, when I get somebody to truly use their eyes actively, they’ll go, “Well, they disappeared. I don’t know where she went. She was right there. Maybe she went back out.” 

I say, “Well, maybe she did because I’m not seeing her right now. Do we need to go look? Or are we okay now that she’s gone?”  I don’t say, “I see what you’re seeing.” I’m not a believer in lying because I don’t see a woman. I do see a jacket hanging over there, and I’m not going to argue with somebody.

“I don’t say, ‘I see what you’re seeing.’
I’m not a believer in lying because
I don’t see a woman. I do see a jacket
hanging over there, and I’m not
going to argue with somebody.”

The trick is, “How do I do the truth, not the whole truth.” I listen to what somebody says, and I validate. [I might say,] “Those kids shouldn’t be out there, wow, so they’re in the tree, or, they’re on the sidewalk?” [And when the answer is “both,” I might respond with,] “Whoa, okay, is there something you think I should do about it? Or shall we just let somebody know about it?”

[If I’m told to yell at the “kids,”] I’m going to go over to the door and say, “That’s not safe.” [The goal is to] move her out of this visual regard because as long as she’s here, this isn’t getting better. I want her to go to a different room because the hippocampus will reset itself.

Being Patient: What do you do if your loved one with dementia is paranoid about taking pills, and you need to make sure they take their medication? Many people suggest putting them in their pudding– are there other ways to help a loved one take their medications?

Snow: I want to make sure that the paranoia isn’t coming from a core part of the dementia, and [if] we are not treating it. For instance, Lewy body is a hallmark dementia for paranoia. It comes up because of the abnormal sensory experiences people with Lewy body experience. Their sense of taste and smell is different, and they’re still tuned into environmental cues. 

They can see or watch people doing things, and they also miss-see and misunderstand. [When they say,] “You’re trying to poison me,” [it] is because you have tried hiding meds in my stuff, and I’ve caught you. One of the things, you go, “So, you’ve noticed me putting things in the bread. Oh, that was butter.” [Then they say,] “No, you spread it, and I saw what you put on.”

[So you say,] “Huh? Well, tell you what, let me get a fresh piece, and let’s see if we can get it on.” We first got to sort out [if] this is something they’re noting about me, and [if it is,] I need to be more careful about how I provide stuff. 

However, [if] there is a need to get medication in, often, [I recommend] asking your provider, “Are there different routes? Are there different ways to get this in?” [You also can ask,] “Is [it] going to be liquid, and I could put it in a drink?” Unfortunately, a lot of the pills that we might want to crush have a bitter taste to them, and they also don’t crush really fine. 

One of the things I’ll recommend is people put it in a jam, like strawberry jam, because strawberry jam is super sweet, and you [can] put a blob of strawberry jam on toast. There’s crunchy– there’s all kinds of stuff going on. You just put it on a quarter piece of toast, they get it all in, [and] it’s sweet. 

[It is] something people will crave, and it’s got texture. I’ll often go [in] that direction rather than the pudding route. Some people will use ice cream that they’ve put other toppings on, but you have to do a small amount, just in case the person doesn’t take it all.

Being Patient: Is it important to know what type or types of dementia my loved one has?

Snow: One of the most important dementias for me in general [is] Lewy body. [It] is a tricky dementia, because half of people with Lewy body have hypersensitivity to medications that are often used to treat a common symptom of Lewy body, which [are] hallucinations and delusions.  

“Half of people with Lewy body
have hypersensitivity to medications
that are often used to treat a common
symptom of Lewy body, which
[are] hallucinations and delusions.”

If they also have Parkinson’s, unfortunately, the carbidopa and levodopa that they might get for their symptoms of mobility makes hallucinations worse. I typically would advise people [that if they think they] might be dealing with some Lewy body, not even all Lewy body, but if you’re suspecting there’s some Lewy Body involvement, I would want that to be identified. 

You for sure do not want to prescribe, in general, how the haloperidol, which is more one of the traditional anti-psychotics that could get used, because it has a higher potential for causing extrapyramidal paralysis, extrapyramidal toxicity, and they might be affected with movement. It could be part of dyskinesia that never goes away. 

It [also] could be a loss of gravitational awareness, so they’re now always leaning and [unable] to come up right. It could make it impossible for them to eat and swallow and have gut motility because, and it can be, it could be an increase in dosage or just developing toxicity. 

Of all of them, [Lewy body is] the one I worry about most, not having accurately identified. Vascular is also a challenge because if you think it’s Alzheimer’s, there are sudden changes. [If] they have vascular, they could be having a stroke. They could [also] be having an infection.

Being Patient: How would you start a conversation if you noticed someone’s parent may be starting to experience memory loss? How would you encourage a family member or a loved one to start that conversation?

Snow: “Hey, I have a question for you. When you were talking about your mom, I think I heard you say that you had a conversation, and then you don’t think she held on to it because she asked you again in a couple of days. Are you thinking that’s like just typical aging, or do you think it might be something more than that, like depression, anxiety, or something along that line?” 

Now, why do I say depression or anxiety or something along that line? They are a little less scary than the “Big D.” The challenge is, if we don’t [bring it up at all], one of the things I found out with my mom is I let stuff go [for] while.

At first, it was just aging, and then it was, “Well, I think she just gets anxious, and she’s lonely.” Then I realized if we don’t do something about those things, it could get a whole lot worse. What I found, at least with my mom, is [that] it didn’t serve me to just not be curious and not be interested in “Is this typical aging, or is this something else?”

“What I found, at least with my mom,
is [that] it didn’t serve me to just not be
curious about it and not be interested in
‘Is this typical aging, or is this something else?'”

Being Patient: How would you recommend talking to a parent about memory loss?

Snow: One of the things I’ll do with [my] Mom is, “Hey, Mom, I’m curious. When you go to the doctor each year, have they been doing any kind of screening for hearing? Sometimes, they’ll ask depression questions when I go, or sometimes they’ll ask if you noticed anything about appetite or whether or not you’re lonely these days? Have they asked you any of those questions that you know about?” 

[Another way to do it is to say,] “Now you’ve got me curious because I know with Dad passing and me being out of the area and some of your friends moving away, what did you tell them when they asked you about being lonely?” What we’re doing is starting a conversation about meaningful things and risk factors. I mean, these are all risk factors that I’m raising. 

[It also could be as simple as,] “How have you been sleeping?” We don’t have to dive directly into dementia, but I think if we know some risk factors, we can start raising up [other questions. Like when I ask,] “Oh, so sleep, huh? Now, did you ask him about that?” Suddenly, I’m curious about your well-being in a friendly way. I’m not saying, “Mom, look at me. You asked me the same question two days ago, and you don’t even remember we had.” Whoa. That’s a different way of [having that conversation]. 

We don’t have those conversations. We don’t learn how to have those conversations. It’s like we talk to kids about sex, or some people don’t. When you learn about your body, and you learn about coming into your body– we don’t learn about the aging of the body as much and what can happen to the brain, body, and senses.

“When you learn about your body, and
you learn about coming into your body —
we don’t learn about the aging of the body
as much and what can happen
to the brain, body, and senses.”

Being Patient: What have you found in your work that has been helpful for dementia caregiving? What have you been focusing on lately?

Snow: The power of humor. Find something that literally makes you laugh out loud and do it regularly. Figure out how to get yourself into joy mode, at least every day or every other day. 

We are learning a lot about the power of true laughter and relationships. Those two things, when you combine them, boost your immune system in a way–there’s no drug on earth that’s going to do it as well as that. [Find] those places and spaces or [create] them, if you have to, to get started.

Figure out how to laugh with someone and bring someone into laughter with you. It can be by watching, looking, or listening to something. Suddenly, it hits you as a chuckle. Then the chuckle grows, but it’s an amazing gift that we have to connect with each other. I think all too often, with what’s going on around us, it’s easy to forget how and when to laugh about something. That truly is a moment where we can embrace pleasure.

Find dementia caregiving advice from other Teepa Snow Q&As here.

Katy Koop is a writer and theater artist based in Raleigh, NC.