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

By Katy Koop | February sixteenth, 2023

As caregiving professional Teepa Snow is well-aware, higher understanding dementia and supporting family members residing with the illness is essential. Nevertheless, caregiving additionally comes with a wide range of questions of which there are few sources. As a follow-up to Snow’s earlier Stay Speak on caregiving and COVID-19, she returned to Stay Talks to reply Being Affected person’s viewers’s questions on caregiving and Dementia. 

As an Occupational Therapist with over 40 years of scientific and tutorial expertise, Snow’s mission is to shed a optimistic gentle on dementia. That’s why she based the GEMS State Mannequin for understanding the development of dementia and the Optimistic Method® coaching methods. Her firm, Optimistic Method to Care (PAC), offers on-line and in-person schooling and merchandise to help these residing with mind change. 

On this newest Stay Speak, she shares her insights on the stress of caregiving, sensible recommendation, and extra with the Being Affected person viewers. 

Watch the total dialog, or learn a transcript from the dialog under:

Being Affected person: How do folks know once they’re transferring from one stage of Alzheimer’s to a different? We received a query from somebody with the start stage of Alzheimer’s, late on-set, that’s nonetheless residing alone and doing issues with assistance from Alexa and her daughter. How do you put together and observe once you begin transferring into the average stage?

Teepa Snow: Nicely, it’s attention-grabbing as a result of the problem is that is somebody who has unimaginable quantities of self-awareness. So, we’ve got somebody whose prefrontal cortex is fairly intact, sure, with reminiscence points, however has the power to manage impulses to say issues like, “I’m effective. I don’t want something.” She is ready to acknowledge that: “Alexa is useful. My daughter is useful. I’m alone now, however I don’t understand how lengthy I’ve the power to be logical and cheap in reaching conclusions.” She has the power to make selections which are according to values and the power to acknowledge: “I must know when to provoke one thing completely different.” 

So I’m gonna go forward with that concept a bit bit as a result of we provoke, after which we precisely sequence via issues. Then we end one thing, after which we’re prepared to maneuver on to one thing else that we provoke. One of many hallmarks for most individuals residing with Alzheimer’s is “I begin to wrestle with that transition from I’m executed to now what do I do now?” It’s that means to maneuver via your day.

With the assistance of Alexa, it might say, “have you ever had your medicine but?” It’s 9 o’clock, and your mind goes, “Oh, yeah. Click on. My meds.” You may then go to the kitchen, get a drink, open the med container, take the drugs, wash out the glass, and all of the steps it takes to take your drugs. Then both Alexa or your daughter tells you it’s time to repair breakfast. What you may discover or what may take your daughter to note is that that’s not sufficient anymore. 

So, regardless that you get the message, “it’s time to repair breakfast,” your mind goes, “Oh yeah, repair breakfast? How do I begin?” , what’s step one in beginning breakfast? 

So, one thing like making espresso or making breakfast is usually not that arduous as a result of we do it day by day, and we do it mechanically. However, rapidly, I’m beginning to have break factors in my day by day routines, which was clean. I might keep in mind the beginning and transition factors for every of these issues. Impulsively, I’m discovering myself in a swamp the place I’m like, crap. So, Alexa telling me to repair breakfast isn’t useful anymore as a result of now I can’t. I can’t keep in mind the steps. 

So, once you begin noticing or any individual notices, even with Alexa’s assist and my daughter checking in, that you just’re having a tougher time getting via a day, that’s when it’s time to make a shift. 

Being Affected person: We simply received a query from Angela, whose mother-in-law is having hallucinations. What can she do, and the way lengthy will this proceed?

Teepa Snow: One of many issues I often ask folks is, what sort of dementia are you coping with? If the particular person resides with Lewy Physique dementia, it’s like, welcome to the world of Lewy Physique— you’re going to be doing this. It is dependent upon how a lot anxiousness, stress, or misery your mother is experiencing. Hallucinations could be excessive and scary, and terrible. They’re principally going to be at night time or within the afternoon. They’ll contain animals, kids, folks, shadows, or issues like that. 

If it’s one other sort of dementia, if it comes up instantly and it’s a hallucination, I must know whether or not or not we’ve got verified that she doesn’t have a urinary tract an infection or an higher respiratory an infection. This additionally might be associated to a brand new medicine or sleep points. We wish to confirm this as a result of we wish to make it possible for that symptom isn’t indicative of one thing deeper taking place that’s not truly dementia. 

Some folks simply begin noticing and seeing issues inaccurately. Moderately than a hallucination, I say they see issues inaccurately. Typically it’s from reminiscence, typically, it’s from creativeness, and typically it’s from emotion. So, as an illustration, if somebody says to me, “There was a person exterior,” my first remark to somebody is: “So, you noticed a man exterior? Was he scaring you? Or have been you actually simply inquisitive about him?” 

Being Affected person: Acknowledgement is essential. In my household, I say, “Hearken to Teepa. Step into their actuality.” That’s so key to only transferring via a few of the obstacles you hit.

Teepa Snow: Precisely. Why would you not? You wish to argue with their mind, and it’s like, their mind is damaged. I imply, you realize that, and but your mind desires to repair it. 

I can solely use the mind they’ve. I imply, in the event that they don’t have that a part of their mind working if their mind is exhibiting them an individual, it means the visible cortex got here up with a human being that they’re seeing now. It’s pretend, I get it, however they’re seeing it. I imply, we might register exercise within the occipital lobe. We might truly register that their mind may be very energetic within the occipital space. Their mind can be very energetic within the amygdala space, which is the menace perceiver.

“You wish to argue with their mind,
and it’s like their mind is damaged.”

If the particular person says, “Nicely, he’s making an attempt to interrupt in,” and “Nicely, that’s not okay. Inform you what we have to get to a safer place then if he’s making an attempt to get in. I’m going to go flip the lights on and see if we are able to’t get him out of right here.”

I can inform you the physiological factor that occurred within the mind, but it surely doesn’t actually matter. As a result of what occurred is the 2 of you got here collectively to cope with a state of affairs that was scaring her. Now it’s not scaring her anymore. You flick the sunshine change just a few occasions, if that works, yeah. And if it doesn’t say, “properly, let’s get to a safer place.”Then, I’ll see what I can discover out about this as a result of that’s not okay that any individual’s trying within the window. Then tomorrow, what I’d do is put up a curtain earlier than we get to dusk or earlier than the reflection begins to occur as a result of it might merely be our personal reflection within the glass.

Being Affected person: Lisa writes that her mother, who’s nonverbal and motionless, has been having issue in swallowing just lately. The employees on the care house want to have her on a day by day dose of Risperidone versus as wanted, and she or he agrees. What are your ideas on this?

Teepa Snow: With Risperidone, there may also be one thing behavioral occurring. As a result of Risperidone is an antipsychotic, it’s utilized in dementia off-label to handle misery. Nevertheless, it additionally suppresses the central nervous system. One of many issues it suppresses is ok motor management and clean muscle management. So, the explanation you noticed my face get actually anxious about that is, as an OT, I do a whole lot of work on chewing, sucking, swallowing, and respiration. It’s how we eat. So, you realize, having the ability to eat safely or drink safely retains us alive. If we give somebody a medicine that impairs the effective motor management of their mouth, lips, tongue epiglottis space, there are sphincter muscle mass that enable the liquid or the meals to go previous the airway and into the esophagus. Then for the particular person to open their epiglottis and breathe once more, that’s actually scary to me as somebody who is anxious concerning the danger of aspiration pneumonia. So, by way of Risperidone, what I’m actually taking a look at is to inform me what the habits is that we’re utilizing it for, and let’s have a look at whether or not might or not it’s how we’re making an attempt to get the meals or liquid to your mom. 

As a result of making an attempt to poke somebody in somebody’s mouth once they don’t even know what we’re making an attempt to do, is distressing. That’s why we’ll suggest utilizing what we name hand-under-hand help, even when the particular person can’t use their palms or their arms, placing my arm underneath there. So, feeling my motion towards their mouth as I work on an elaborate scoop can actually make a distinction. Now we have some movies on the web site if you happen to’re actually curious and , and I might say it’s price it. We do free consultations, and it’s price a free session as a result of that’s not truly making sense to my mind with out extra information.

Being Affected person: I’m listening to extra about folks residing with dementia having to go to the hospital, and once they come out, their situation has drastically superior. What’s it about hospitals that they’ll have an effect on folks residing with dementia like this?

Teepa Snow: Hospitals are essentially the most harmful locations for folks residing with dementia, and over 50 p.c of individuals with average to extreme states of dementia will find yourself in a single annually. Hospitals are actually not designed for dementia. The communication system isn’t designed for dementia. The care system isn’t designed for dementia. Even the coaching of employees isn’t skilled within the care of individuals residing with dementia. Folks go to the hospital to repair one thing. So, we’re both going to do surgical procedure, and we’re going to do therapy. We’re evaluating, and so we’re doing actually uncomfortable and painful issues to folks in unfamiliar methods. 

We’re telling them what we’re doing with phrases they’ll’t at all times comprehend. So, it’s a setup, and so they’re supposed to remain in a mattress, and so they’re not alleged to get out, and we tie them as much as tools that they’ve to recollect to take with them. Then, we use medicines that should make them much less capable of do issues as a result of we would like them sedated for like an analysis of swallowing or an analysis of a damaged arm. So, we’ve got so many issues occurring. Persons are so unaware what finally ends up taking place is that persons are managed. Sadly, the administration is a really excessive danger for operate. For those who’re having hassle utilizing the lavatory and also you fall, then let’s put in a catheter as a result of we don’t have to be doing that type of care.

For those who’ve had surgical procedure, the catheter goes in. Think about popping out of surgical procedure and you discover one thing in you. There’s a excessive danger that you just’ll go “What’s that? I don’t like that,” and pull it out. So, it will probably snowball, and falls are very excessive danger. Accidents are excessive danger. Turning into aggressive and resistive is excessive danger, as is reducing weight and dropping ADL expertise. So, it’s actually a dangerous proposition. And so, we’ve got chosen hospitals which are engaged on turning into dementia educated. And so they’re usually what are known as NICHE hospitals, and it’s a part of a nationwide nursing initiative. So, they’re designed to essentially attempt to acknowledge that we want a special mannequin, the place we’re going to have the ability to have eyes on and help for and programming for individuals who don’t have the power to manage impulses and get via making good decisions or know their very own limitations. And we’re making an attempt to determine what’s occurring with them.

Being Affected person: What do you counsel for agitation and numerous occasions of the day? Lisa writes that when her mom is agitated, she is going to breathe closely, rub her palms collectively, and seize for issues. What are you able to do to assist with that?

Teepa Snow: It is a very anxious habits that escalates to bodily anxiousness. So, she’s making an attempt some self-soothing strategies. While you breathe actually quick within the gentle like that, you truly deoxygenate. So, one of many issues I’ll classically ask folks to do is I’ve a method the place you are taking palms, and you then take the hand, and your thumbs are collectively, and you’ll apply rigidity and stress on the thenar eminence. You may also put a bit rigidity on the net area, and also you pump on and off. You steadily gradual with the pumping, and also you go, “You’re actually apprehensive. I hear you’re apprehensive. Breathe with me.” And we work respiration from our nostril in, respiration via the mouth out. As a result of we’re related neurologically, I’m giving proprioceptive deep-pressure enter. If the particular person is right-handed, I’m on the suitable aspect. And I’m going, “That is scary. I’m right here. This isn’t okay. I’ve received you. I hear you. Let’s determine it out. All proper. All proper.”

I’ve received to be keen to start out the place the particular person exhibits me they’re. I come up beneath, and I help them. I carry them up steadily and shift them down. As a result of what’s taking place is incessantly in dementia, one thing alarms, and the primitive mind goes into cortisol and adrenaline, and it’s dumping on the human being. For those who’ve ever had cortisol and adrenaline bounce on you, it’s like, “Oh, my God. Oh, my God. Oh, God, What do I do? What ought to I do?” Sadly, it got here out of nowhere, and on this case, the particular person doesn’t even have any consciousness of why rapidly that is beginning to occur.

At that second, my job is to acknowledge that degree of acute neurological misery and begin to weave it down. I can’t repair it if I’m not listening.

Being Affected person: How can I greatest help somebody with Alzheimer’s that lives distant? How do you deal with this?

Teepa Snow: Have you ever tried Zoom or FaceTime? As a result of one of many curiosities is usually folks can be effective with the voice. However, once they see a face that’s previous, it doesn’t match up. Typically they’re completely effective with it. What’s cool about Zoom or FaceTime is I can go, “Check out this. Do you prefer it? Or do you not prefer it? You’d say one or the opposite?” 

“I’ve received to be keen to start out the place
the particular person exhibits me they’re. I come up
beneath, and I help them.”

On the decision, you possibly can go, “ what? I believed we might write a be aware. And I’ll mail it. So that is for Betty. So it’s a thanks be aware. And she or he despatched me this mug. What do you assume I ought to write within the be aware?” As a result of now we’re not simply speaking concerning the previous. Now we’re speaking, you realize, and you are able to do it with solely phrases. It’s tougher when persons are within the average state of dementia to carry on to all of the phrases, which is why I like Zoom and FaceTime. I can maintain one thing up. I do know to position it to the aspect of myself, so I can get us to concentrate on it. So, for people who find themselves lengthy distance, Zoom, FaceTime, or Skype. In case you have somebody on the opposite finish who’s supporting the one who can flip it on and switch it off and get them to the display screen. I’ve had nice interactions with folks lengthy distance. If I’ve a help particular person, one in every of their tasks is to set folks as much as join and go to. My function is to maintain it brief, hold it easy, and solely as usually as your coronary heart will allow.

Being Affected person: So, don’t really feel obligated, like, ‘I’ve to go each Wednesday at 12 o’clock,’ proper?

Teepa Snow: One of many issues is you’re considering they understand how lengthy it’s been. Now we have loads of proof. While you’re not there, you’re not there. If you find yourself there, you might be. As quickly as you allow, folks will typically assume, “properly, my daughter hasn’t been right here for months,” and also you assume, “properly, that’s not truthful. I used to be simply there.” It’s like, sure, she loves you very a lot, and she or he misses you an enormous quantity. Bear in mind how the hippocampus retains up with the passage of time. It seems like this: fifteen minutes because you left has been months. Recover from it and be celebratory since you simply heard how a lot she loves you.

Ten minutes of a great interplay is so a lot better than an hour of distress. Why trouble?

Being Affected person: We received this query about discovering a dental clinic for somebody with dementia. Particularly, they’re fascinated about a clinic that might put sufferers to sleep in the course of the process. Do you may have recommendation on navigating dental care? Or, if not searching for out dental care ought to be thought-about?

Teepa Snow: One of many issues I might suggest is, properly, let’s assess and see how it’s. So let’s have any individual placed on a robe and placed on a masks. Let’s get dental floss, a few of these little plastic placket issues, after which the sharp factor. I encourage folks to essentially take into consideration that approach I’ve, Hand underneath Hand. It actually does make a distinction. The second hand is definitely stabilizing the particular person and simply seeing what occurs once you’re doing their mouth. 

“Ten minutes of a great interplay is
so a lot better than an hour of distress.”

If I’m going “Ahh,”  and the particular person holds it open whereas I’m fiddling round in there, the dentist could be effective. If the particular person is like, “No, no, get out, depart it alone,” the dentist won’t be the selection. If I’ve any individual who goes into the zone, it’s nice. Like we get them in that setting the place there’s the chair, and also you lean again, and so they’ve been any individual who’s maintained their dental hygiene very well their entire life. It’s superb how usually the previous reminiscence pops up since you get them in the suitable place on the proper time, and the persons are doing the suitable factor. I’m at all times current with my particular person. I additionally at all times prep the dentists that, “If I say cease, I’m going to wish you to cease proper then.” 

I’ll use the particular person’s palms and say, “she’s going to be in your mouth. Right here we go. We’re going to do it.” Typically, you realize, in the event that they’re in a position, we’ll put a chunk block in, however the issue is you must watch out with blocks. As a result of in the event that they open even wider, then we’ve got to fish the block out. However I’ve had folks fairly superior have the ability to do oral cleanings. If it wasn’t a part of their follow, if it hadn’t been one thing they’d been accustomed to, I believe it’s time to name it off and simply work on mouth care. That’s just about how we’re going to have the ability to handle, and even that may be actually difficult for some of us.

Being Affected person: How do you navigate stopping somebody from driving? We additionally had a query about whether or not somebody with Alzheimer’s could be liable within the case of a automobile crash. How do you counsel approaching driving or not driving in regard to dementia?

Teepa Snow: If there’s a automobile crash, you possibly can lose the whole lot you may have. Sure, in lots of areas having a situation of dementia and persevering with to drive even when the physician has not instructed you to cease, you’d be liable. In my follow, I might say that you just want an analysis from a driving clinic. That’s an actual driving clinic for individuals who have neurological points. There are sometimes clinics round if yow will discover them. Typically you possibly can see OTs, typically PTS, typically driving therapists, who actually are trying on the particular person’s not solely their routine habits however the “Oh, geez, what occurred.” So, there’s a shock, and so they must react to it. As a result of it’s one factor to drive if nothing uncommon occurs, but when one thing surprises you once you’re driving, you may have to have the ability to cope with it.

Persevering with to drive in average state dementia implies that we’ve got folks driving motor automobiles who’re primarily utilizing binocular imaginative and prescient and reminiscence of driving. So, I’m hoping that they’ll look sufficient round to not miss one thing important. The chance of getting a big accident that injures somebody or might kill somebody, and we’ve had it occur a number of occasions, the one group extra more likely to have an accident that’s vital than this inhabitants we’re speaking about are youngsters driving in a automobile with different folks. That’s fairly intense. So, it’s positively one thing that ought to be evaluated by professionals who’re conscious of the on-off nature and the person nature of dementia. Some individuals who’ve been wonderful drivers their entire life can maintain it for longer, however all it takes is one thing taking place. 

So, beginning the method of claiming, you realize, there’ll most likely come a time once we can’t do the driving ourselves is essential. My concept is we begin to get used to Uber, or we begin to get used to asking any individual to take us and get used to the passenger seat— earlier than we have to.

Being Affected person: We received this query— how do you address the truth of ready for somebody to die?

Teepa Snow: My query again is, what’s her pleasure and pleasure in being alive? What does she nonetheless appear to get pleasure from? What’s it that retains her on this earth? There’s both unfinished enterprise or moments of pleasure she’s nonetheless getting. So inform me, assume exhausting. What might or not it’s? As a result of that’s what sustains her. The situation is making it actually exhausting for her.

Now, I’ll flip the query and say to you, what are your moments of pleasure? For those who can’t discover them, you’re the one I’m apprehensive about not surviving, and we have to work on the sense of loss and grief you might be anticipating already. We have to work on the despair and the disappointment you are feeling dropping this deep, significant, highly effective relationship. And my query is, what do you want from her to be full? And what does she want from you? How can we assist each other get to a spot of completion?

Being Affected person: I believe we’ve hit an actual nerve as a result of that’s such a poignant query to ask. There are lots of people on the market who don’t have a alternative, proper? I imply, they’re the only caregiver. So what do they want?

Teepa Snow: They want a help system. I imply, that’s the factor. You’re nonetheless right here, however you don’t have the help you might want to do that anymore. That is speaking with any individual and dealing via it and citing issues which are taking place now, and beginning to acknowledge how a lot we’re clinging regardless that we don’t assume we’re. 

We’re encouraging— going “Yet one more chunk. Are you able to open? Please, come on. You are able to do this now. Swallow. I want you to swallow. Are you able to swallow for me?”

That sounds loving, but it surely’s not. It’s a plea to remain. It’s time to look exhausting and listen to the particular person say, “I’m not hungry. I’m not thirsty. However you want me. So I’ll keep, and I’ll attempt to do it once more.” 

Versus, “You don’t need it? Okay, I hear you. , what a few hand therapeutic massage? How about we take heed to this music?” 

Actually, we aren’t skilled for the artwork of letting go of somebody in gradual movement. 

Being Affected person: You’ve touched on this earlier than, however what are the indicators that caregiving is taking a toll on the caregiver and it simply turns into too nerve-racking?

Teepa Snow: We all know issues like: how do you price your self? Would you say you’re confused however managing it? Or do you are feeling such as you’re in misery a number of occasions? When you may have misery a number of occasions in a day, there may be an excessive amount of stress. We have to determine what to do with that. 

Second, how properly are you sleeping? Are you not sleeping? I’d say no less than six hours of first rate, good-quality sleep, and if not, it’s time to have a look at that. As a result of what we don’t at all times acknowledge is that we could be having points with sleep apnea, we could be having points with sleep, which is impacting our mind doubtlessly and inflicting mind adjustments. 

“Actually, we aren’t skilled for
the artwork of letting go of
somebody in gradual movement.”

Then we’ve got our third one, which is: are we feeling socially remoted, trapped, or deserted by others? And if you happen to really feel these phrases are applicable, deserted or trapped, then it’s positively time to get some help in place or reevaluate your function as a result of trapped or deserted is a harmful place to be.

Inform me what you’re uncomfortable with or what you discover painful as a result of once we begin unpacking what’s uncomfortable, what’s truly painful when we’ve got extra issues which are painful than uncomfortable, it’s time to again it down and discover another sorts of how or helps for doing it. Lastly, once you have a look at your self and also you say, “I’m not doing something proper,” “I don’t like myself,” “I don’t like what’s occurring,” or “I don’t like my particular person,” it’s positively time to go “oh.”

For those who can’t discover one thing you want day by day, your primitive mind will inform you that you’re not thriving. Frankly, you probably have no means to thrive, you’ll not survive lengthy as a carer. You’ll begin to burn out and deteriorate. For those who’re already there, which any carers are, it’s time to acknowledge “I might use some help.” If you must hold going, you positively need some completely different help in place to make this work.

This interview has been edited for size and readability.

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