Your Dementia Caregiving Questions Answered: a Q&A with Teepa Snow

As caregiving expert Teepa Snow is well-aware, better understanding dementia and supporting loved ones living with the disease is crucial. However, caregiving also comes with a variety of questions of which there are few resources. As a follow-up to Snow’s previous Live Talk on caregiving and COVID-19, she returned to Live Talks to answer Being Patient’s audience’s questions about caregiving and Dementia. 

As an Occupational Therapist with over 40 years of clinical and academic experience, Snow’s mission is to shed a positive light on dementia. That’s why she founded the GEMS State Model for understanding the progression of dementia and the Positive Approach® training strategies. Her company, Positive Approach to Care (PAC), provides online and in-person education and products to support those living with brain change. 

In this latest Live Talk, she shares her insights on the stress of caregiving, practical advice, and more with the Being Patient audience. 

Watch the full conversation, or read a transcript from the conversation below:

Being Patient: How do people know when they’re moving from one stage of Alzheimer’s to another? We got a question from someone with the beginning stage of Alzheimer’s, late on-set, that is still living alone and doing things with the aid of Alexa and her daughter. How do you prepare and track when you start moving into the moderate stage?

Teepa Snow: Well, it’s interesting because the challenge is this is someone who has incredible amounts of self-awareness. So, we have someone whose prefrontal cortex is pretty intact, yes, with memory issues, but has the ability to control impulses to say things like, “I’m fine. I don’t need anything.” She is able to recognize that: “Alexa is helpful. My daughter is helpful. I’m alone now, but I don’t know how long I have the ability to be logical and reasonable in reaching conclusions.” She has the ability to make decisions that are consistent with values and the ability to recognize: “I need to know when to initiate something different.” 

So I’m gonna go ahead with that idea a little bit because we initiate, and then we accurately sequence through things. Then we finish something, and then we’re ready to move on to something else that we initiate. One of the hallmarks for most people living with Alzheimer’s is “I start to struggle with that transition from I’m done to now what do I do now?” It’s that ability to move through your day.

With the help of Alexa, it may say, “have you had your medication yet?” It’s nine o’clock, and your brain goes, “Oh, yeah. Click. My meds.” You can then go to the kitchen, get a drink, open the med container, take the pills, wash out the glass, and all the steps it takes to take your pills. Then either Alexa or your daughter tells you it’s time to fix breakfast. What you might notice or what might take your daughter to notice is that that’s not enough anymore. 

So, even though you get the message, “it’s time to fix breakfast,” your brain goes, “Oh yeah, fix breakfast? How do I start?” You know, what’s the first step in starting breakfast? 

So, something like making coffee or making breakfast is typically not that hard because we do it every day, and we do it automatically. But, all of a sudden, I’m starting to have break points in my daily routines, which used to be smooth. I could remember the start and transition points for each of those things. All of a sudden, I’m finding myself in a swamp where I’m like, crap. So, Alexa telling me to fix breakfast isn’t helpful anymore because now I can’t. I can’t remember the steps. 

So, when you start noticing or somebody notices, even with Alexa’s help and my daughter checking in, that you’re having a harder time getting through a day, that’s when it’s time to make a shift. 

Being Patient: We just got a question from Angela, whose mother-in-law is having hallucinations. What can she do, and how long will this continue?

Teepa Snow: One of the things I usually ask people is, what type of dementia are you dealing with? If the person is living with Lewy Body dementia, it’s like, welcome to the world of Lewy Body— you’re going to be doing this. It depends on how much anxiety, stress, or distress your mom is experiencing. Hallucinations can be extreme and scary, and awful. They’re mostly going to be at night or in the afternoon. They’ll involve animals, children, people, shadows, or things like that. 

If it’s another type of dementia, if it comes up suddenly and it’s a hallucination, I need to know whether or not we have verified that she doesn’t have a urinary tract infection or an upper respiratory infection. This also could be related to a new medication or sleep issues. We want to verify this because we want to make sure that that symptom is not indicative of something deeper happening that’s not actually dementia. 

Some people just start noticing and seeing things inaccurately. Rather than a hallucination, I say they see things inaccurately. Sometimes it’s from memory, sometimes, it’s from imagination, and sometimes it’s from emotion. So, for instance, if someone says to me, “There was a man outside,” my first comment to someone is: “So, you saw a guy outside? Was he scaring you? Or were you really just curious about him?” 

Being Patient: Acknowledgement is key. In my family, I say, “Listen to Teepa. Step into their reality.” That is so key to just moving through some of the obstacles you hit.

Teepa Snow: Exactly. Why would you not? You want to argue with their brain, and it’s like, their brain is broken. I mean, you know that, and yet your brain wants to fix it. 

I can only use the brain they have. I mean, if they don’t have that part of their brain working if their brain is showing them a person, it means the visual cortex came up with a human being that they’re seeing now. It’s fake, I get it, but they’re seeing it. I mean, we would register activity in the occipital lobe. We could actually register that their brain is very active in the occipital area. Their brain is also very active in the amygdala area, which is the threat perceiver.

“You want to argue with their brain,
and it’s like their brain is broken.”

If the person says, “Well, he’s trying to break in,” and “Well, that’s not okay. Tell you what we need to get to a safer place then if he’s trying to get in. I am going to go turn the lights on and see if we can’t get him out of here.”

I can tell you the physiological thing that happened in the brain, but it doesn’t really matter. Because what happened is the two of you came together to deal with a situation that was scaring her. Now it’s not scaring her anymore. You flick the light switch a few times, if that works, yeah. And if it doesn’t say, “well, let’s get to a safer place.”Then, I’ll see what I can find out about this because that’s not okay that somebody’s looking in the window. Then tomorrow, what I might do is put up a curtain before we get to nightfall or before the reflection starts to happen because it could simply be our own reflection in the glass.

Being Patient: Lisa writes that her mom, who is nonverbal and immobile, has been having difficulty in swallowing recently. The staff at the care home would like to have her on a daily dose of Risperidone as opposed to as needed, and she agrees. What are your thoughts on this?

Teepa Snow: With Risperidone, there might also be something behavioral going on. Because Risperidone is an antipsychotic, it is used in dementia off-label to manage distress. However, it also suppresses the central nervous system. One of the things it suppresses is fine motor control and smooth muscle control. So, the reason you saw my face get really anxious about this is, as an OT, I do a lot of work on chewing, sucking, swallowing, and breathing. It’s how we eat. So, you know, being able to eat safely or drink safely keeps us alive. If we give someone a medication that impairs the fine motor control in their mouth, lips, tongue epiglottis area, there are sphincter muscles that allow the liquid or the food to go past the airway and into the esophagus. Then for the person to open their epiglottis and breathe again, that’s really scary to me as someone who is concerned about the risk of aspiration pneumonia. So, in terms of Risperidone, what I’m really looking at is to tell me what the behavior is that we’re using it for, and let’s look at whether could it be how we’re trying to get the food or liquid to your mother. 

Because trying to poke someone in someone’s mouth when they don’t even know what we’re trying to do, is distressing. That’s why we’ll recommend using what we call hand-under-hand support, even if the person can’t use their hands or their arms, putting my arm under there. So, feeling my movement toward their mouth as I work on an elaborate scoop can really make a difference. We have some videos on the website if you’re really curious and interested, and I would say it’s worth it. We do free consultations, and it’s worth a free consultation because that’s not actually making sense to my brain without more data.

Being Patient: I’m hearing more about people living with dementia having to go to the hospital, and when they come out, their condition has drastically advanced. What is it about hospitals that they can affect people living with dementia like this?

Teepa Snow: Hospitals are the most dangerous places for people living with dementia, and over 50 percent of people with moderate to severe states of dementia will end up in one each year. Hospitals are really not designed for dementia. The communication system isn’t designed for dementia. The care system isn’t designed for dementia. Even the training of staff is not trained in the care of people living with dementia. People go to the hospital to fix something. So, we’re either going to do surgery, and we’re going to do treatment. We’re evaluating, and so we’re doing really uncomfortable and painful things to people in unfamiliar ways. 

We’re telling them what we’re doing with words they can’t always comprehend. So, it’s a setup, and they’re supposed to stay in a bed, and they’re not supposed to get out, and we tie them up to equipment that they have to remember to take with them. Then, we use medications that are meant to make them less able to do things because we want them sedated for like an evaluation of swallowing or an evaluation of a broken arm. So, we have so many things going on. People are so unaware what ends up happening is that people are managed. Unfortunately, the management is a very high risk for function. If you’re having trouble using the bathroom and you fall, then let’s put in a catheter because we don’t need to be doing that kind of care.

If you’ve had surgery, the catheter goes in. Imagine coming out of surgery and you find something in you. There’s a high risk that you’ll go “What is that? I don’t like that,” and pull it out. So, it can snowball, and falls are very high risk. Injuries are high risk. Becoming aggressive and resistive is high risk, as is losing weight and losing ADL skills. So, it is really a risky proposition. And so, we have selected hospitals that are working on becoming dementia knowledgeable. And they’re often what are called NICHE hospitals, and it’s part of a national nursing initiative. So, they’re designed to really try to recognize that we need a different model, where we’re going to be able to have eyes on and support for and programming for people who don’t have the ability to control impulses and get through making good choices or know their own limitations. And we’re trying to figure out what’s going on with them.

Being Patient: What do you suggest for agitation and various times of the day? Lisa writes that when her mother is agitated, she will breathe heavily, rub her hands together, and grab for things. What can you do to help with that?

Teepa Snow: This is a very anxious behavior that escalates to physical anxiety. So, she’s trying some self-soothing techniques. When you breathe really fast in the light like that, you actually deoxygenate. So, one of the things I’ll classically ask people to do is I have a technique where you take hands, and then you take the hand, and your thumbs are together, and you can apply tension and pressure on the thenar eminence. You can also put a little tension on the web space, and you pump on and off. You gradually slow with the pumping, and you go, “You’re really worried. I hear you’re worried. Breathe with me.” And we work breathing from our nose in, breathing through the mouth out. Because we’re connected neurologically, I’m giving proprioceptive deep-pressure input. If the person is right-handed, I’m on the right side. And I’m going, “This is scary. I’m here. This is not okay. I’ve got you. I hear you. Let’s figure it out. All right. All right.”

I’ve got to be willing to start where the person shows me they are. I come up underneath, and I support them. I bring them up gradually and shift them down. Because what’s happening is frequently in dementia, something alarms, and the primitive brain goes into cortisol and adrenaline, and it’s dumping on the human being. If you’ve ever had cortisol and adrenaline jump on you, it’s like, “Oh, my God. Oh, my God. Oh, God, What do I do? What should I do?” Unfortunately, it came out of nowhere, and in this case, the person doesn’t even have any awareness of why all of a sudden this is starting to happen.

At that moment, my job is to recognize that level of acute neurological distress and start to weave it down. I can’t fix it if I’m not listening.

Being Patient: How can I best support someone with Alzheimer’s that lives far away? How do you handle this?

Teepa Snow: Have you tried Zoom or FaceTime? Because one of the curiosities is sometimes people will be fine with the voice. But, when they see a face that’s old, it doesn’t match up. Sometimes they’re absolutely fine with it. What’s cool about Zoom or FaceTime is I can go, “Take a look at this. Do you like it? Or do you not like it? You would say one or the other?” 

“I’ve got to be willing to start where
the person shows me they are. I come up
underneath, and I support them.”

On the call, you can go, “You know what? I thought we could write a note. And I’ll mail it. So this is for Betty. So it’s a thank you note. And she sent me this mug. What do you think I should write in the note?” Because now we’re not just talking about the past. Now we’re talking, you know, and you can do it with only words. It’s harder when people are in the moderate state of dementia to hold on to all the words, which is why I like Zoom and FaceTime. I can hold something up. I know to place it to the side of myself, so I can get us to focus on it. So, for people who are long distance, Zoom, FaceTime, or Skype. If you have someone on the other end who’s supporting the person who can turn it on and turn it off and get them to the screen. I’ve had great interactions with people long distance. If I have a support person, one of their responsibilities is to set people up to connect and visit. My role is to keep it short, keep it simple, and only as often as your heart will permit.

Being Patient: So, don’t feel obligated, like, ‘I have to go every Wednesday at 12 o’clock,’ right?

Teepa Snow: One of the problems is you’re thinking they know how long it’s been. We have plenty of evidence. When you’re not there, you’re not there. When you are there, you are. As soon as you leave, people will sometimes think, “well, my daughter hasn’t been here for months,” and you think, “well, that’s not fair. I was just there.” It’s like, yes, she loves you very much, and she misses you a huge amount. Remember how the hippocampus keeps up with the passage of time. It feels like this: fifteen minutes since you left has been months. Get over it and be celebratory because you just heard how much she loves you.

Ten minutes of a good interaction is so much better than an hour of misery. Why bother?

Being Patient: We got this question about finding a dental clinic for someone with dementia. In particular, they’re interested in a clinic that would put patients to sleep during the procedure. Do you have advice on navigating dental care? Or, if not seeking out dental care should be considered?

Teepa Snow: One of the things I would recommend is, well, let’s assess and see how it is. So let’s have somebody put on a gown and put on a mask. Let’s get dental floss, some of those little plastic placket things, and then the pointy thing. I encourage people to really think about that technique I have, Hand under Hand. It really does make a difference. The second hand is actually stabilizing the person and just seeing what happens when you’re doing their mouth. 

“Ten minutes of a good interaction is
so much better than an hour of misery.”

If I go “Ahh,”  and the person holds it open while I’m fiddling around in there, the dentist might be fine. If the person is like, “No, no, get out, leave it alone,” the dentist might not be the choice. If I have somebody who goes into the zone, it’s great. Like we get them in that environment where there’s the chair, and you lean back, and they’ve been somebody who’s maintained their dental hygiene really well their whole life. It’s amazing how often the old memory pops up because you get them in the right place at the right time, and the people are doing the right thing. I’m always present with my person. I also always prep the dentists that, “If I say stop, I’m going to need you to stop right then.” 

I’ll use the person’s hands and say, “she’s going to be in your mouth. Here we go. We’re going to do it.” Sometimes, you know, if they’re able, we’ll put a bite block in, but the problem is you have to be careful with blocks. Because if they open even wider, then we have to fish the block out. But I’ve had people pretty advanced be able to do oral cleanings. If it wasn’t part of their practice, if it hadn’t been something they’d been familiar with, I think it’s time to call it off and just work on mouth care. That’s pretty much how we’re going to be able to manage, and even that can be really challenging for some folks.

Being Patient: How do you navigate stopping someone from driving? We also had a question about whether someone with Alzheimer’s would be liable in the case of a car crash. How do you suggest approaching driving or not driving in regard to dementia?

Teepa Snow: If there is a car crash, you could lose everything you have. Yes, in many areas having a condition of dementia and continuing to drive even if the doctor has not told you to stop, you would be liable. In my practice, I would say that you need an evaluation from a driving clinic. That’s a real driving clinic for people who have neurological issues. There are often clinics around if you can find them. Sometimes you can see OTs, sometimes PTS, sometimes driving therapists, who really are looking at the person’s not only their routine behavior but the “Oh, geez, what happened.” So, there’s a surprise, and they have to react to it. Because it’s one thing to drive if nothing unusual happens, but if something surprises you when you’re driving, you have to be able to deal with it.

Continuing to drive in moderate state dementia means that we have people driving motor vehicles who are primarily using binocular vision and memory of driving. So, I’m hoping that they will look enough around to not miss something vital. The risk of having a significant accident that injures someone or could kill someone, and we’ve had it happen multiple times, the only group more likely to have an accident that’s significant than this population we’re talking about are teenagers driving in a car with other people. That’s pretty intense. So, it’s definitely something that should be evaluated by professionals who are aware of the on-off nature and the individual nature of dementia. Some people who’ve been excellent drivers their whole life can sustain it for longer, but all it takes is something happening. 

So, starting the process of saying, you know, there’ll probably come a time when we can’t do the driving ourselves is important. My idea is we start to get used to Uber, or we start to get used to asking somebody to take us and get used to the passenger seat— before we need to.

Being Patient: We got this question— how do you cope with the reality of waiting for someone to die?

Teepa Snow: My question back is, what is her joy and pleasure in being alive? What does she still seem to enjoy? What is it that keeps her on this earth? There’s either unfinished business or moments of joy she’s still getting. So tell me, think hard. What could it be? Because that’s what sustains her. The condition is making it really hard for her.

Now, I’ll flip the question and say to you, what are your moments of joy? If you can’t find them, you’re the one I’m worried about not surviving, and we need to work on the sense of loss and grief you are anticipating already. We need to work on the depression and the sadness you feel losing this deep, meaningful, powerful relationship. And my question is, what do you need from her to be complete? And what does she need from you? How can we help one another get to a place of completion?

Being Patient: I think we’ve hit a real nerve because that is such a poignant question to ask. There are a lot of people out there who don’t have a choice, right? I mean, they’re the sole caregiver. So what do they need?

Teepa Snow: They need a support system. I mean, that’s the thing. You’re still here, but you don’t have the support you need to do this anymore. This is talking with somebody and working through it and bringing up things that are happening now, and starting to acknowledge how much we are clinging even though we don’t think we are. 

We are encouraging— going “One more bite. Can you open? Please, come on. You can do this now. Swallow. I need you to swallow. Can you swallow for me?”

That sounds loving, but it’s not. It’s a plea to stay. It’s time to look hard and hear the person say, “I’m not hungry. I’m not thirsty. But you need me. So I’ll stay, and I’ll try to do it again.” 

Versus, “You don’t want it? Okay, I hear you. You know, what about a hand massage? How about we listen to this music?” 

Truly, we are not trained for the art of letting go of someone in slow motion. 

Being Patient: You’ve touched on this before, but what are the signs that caregiving is taking a toll on the caregiver and it just becomes too stressful?

Teepa Snow: We know things like: how do you rate yourself? Would you say you’re stressed but managing it? Or do you feel like you’re in distress multiple times? When you have distress multiple times in a day, there is too much stress. We need to figure out what to do with that. 

Second, how well are you sleeping? Are you not sleeping? I’d say at least six hours of decent, good-quality sleep, and if not, it’s time to look at that. Because what we don’t always recognize is that we might be having issues with sleep apnea, we might be having issues with sleep, which is impacting our brain potentially and causing brain changes. 

“Truly, we are not trained for
the art of letting go of
someone in slow motion.”

Then we have our third one, which is: are we feeling socially isolated, trapped, or abandoned by others? And if you feel those words are appropriate, abandoned or trapped, then it’s definitely time to get some support in place or reevaluate your role because trapped or abandoned is a dangerous place to be.

Tell me what you’re uncomfortable with or what you find painful because when we start unpacking what’s uncomfortable, what’s actually painful when we have more things that are painful than uncomfortable, it’s time to back it down and find some other kinds of ways or supports for doing it. Finally, when you look at yourself and you say, “I am not doing anything right,” “I don’t like myself,” “I don’t like what’s going on,” or “I don’t like my person,” it is definitely time to go “oh.”

If you can’t find something you like every day, your primitive brain will tell you that you are not thriving. Frankly, if you have no ability to thrive, you will not survive long as a carer. You will start to burn out and deteriorate. If you’re already there, which any carers are, it’s time to recognize “I could use some support.” If you have to keep going, you definitely want some different support in place to make this work.

This interview has been edited for length and clarity.

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