Spotlight on Care: Alzheimer's Caregiving
Welcome to Spotlight on Care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer’s and other dementias. Spotlight on Care is produced by the University of California, Irvine Institute for Memory Impairments and Neurological Disorders, UCI MIND. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information, visit mind.uci.edu. What would like to hear about next? Email us at mwitbrac@uci.edu.
Spotlight on Care: Alzheimer's Caregiving
Coping with Challenging Situations in Dementia Care with Teepa Snow
Join Steve and Virginia for an enlightening conversation with renowned dementia care educator Teepa Snow as we explore how to cope with challenging situations when supporting people living with dementia. Teepa shares her compassionate, person-centered approach to understanding the why behind these challenges, and offers practical techniques for de-escalating tense situations, identifying common triggers, and maintaining dignity and connection. Whether you’re a family care partner or professional care provider, Teepa’s decades of expertise will transform the way you respond to challenging situations and provide actionable strategies that make a real difference in daily care.
Teepa's Website: https://teepasnow.com/
ANNOUNCER From the University of California, Irvine. This is UCI MIND's Spotlight on Care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias.
Virginia:Welcome to Spotlight on Care today, Mr. Steve O'Leary and I have one of the leading dementia care experts in the country. And if you have ever searched for answers to a problem or a dilemma that you are having while caring for someone with dementia, you have most likely come across this amazing person. Her name is Teepa Snow, and she is known for her positive approach to care, which she calls PAC. Teepa has over 40 years of clinical experience, and she has developed a unique approach to dementia care, emphasizing retained abilities and positive interactions. Welcome, Teepa, we're so glad you're here with us today.
Teepa:Thanks. I'm so glad to be with you all. It's good to be with people who care.
Virginia:Yes, and we do, right? I must say, I've been a big fan of yours for years and years, and we're lucky that you agreed to be our guest today.
Teepa:I'm very pleased to be with you, because what we're doing together is changing the culture of care moving forward, Because what we experienced way back when, we don't need people experiencing anymore. I want to change the phrase, "Oh, I wish I'd known that," to "Oh, I knew this, and this is what I did, and it made a difference." I mean, instead of, "I wish I'd known that," like I'm so tired of "I wish I'd known that"
Virginia:I'm a I wish I had known that. I'd be such a better caregiver today than I was. Right? Steve,
Steve:Absolutely. Well, I think you were a good caregiver then.
Teepa:You were the best you could be then.
Steve:That's the point.
Virginia:I was the best I could be then. I just kept trying to correct her. And I'm learning all your videos, I'm- well, okay, so here's the thing- we are going to ask Teepa questions that I hear a lot, and I think by the end of this podcast, people will understand why she says you need to be a detective to figure out why someone is doing what they're doing, and then you can be better prepared for the approach to the problem after being a detective. Isn't that, right Teepa?
Teepa:That's it. I mean, we have to be curious. We have to be compassionate. Believe that people are trying to communicate with us, even if the communication is not one I'd prefer, they're trying to tell me something, and I've got to get curious about what that is. I also have to believe that if we work together, we're going to get to a different place than if I keep wanting what I want, they keep doing what they're doing. It's not going to get better, it's just going to continue to repeat and it's, I'm not liking it, so let's do something different. And then I'd say the last part of the whole thing is I've got to believe in the relationship. That I really do care about this relationship, and I'm willing to work on it, because I don't want it to stay like it is. I want it to be a better relationship.
Virginia:Absolutely. And it can't be, it gets stuck if you're always correcting somebody, right? Dementia or not?
Teepa:Oh, I think it's fine. I don't mind when you correct me. I mean, you think you're the boss of everybody, of course. It's just like nobody likes to feel like the other person is better than them, smarter than them. It gives you that sense of you don't even like me very much, and it's not a very comfortable place to be.
Virginia:It's the vibe that starts to happen. "Oh, they're correcting me again." The one I couldn't cave into was when mom said she was talking about her second husband. My dad and my mom were married for 55 years. There was no second husband.
Teepa:Oh, so this is a really interesting one. Do you want to explore this a little bit, or do you want to move on to something else?
Virginia:Oh sure.
Teepa:So here's the interesting thing. Did your dad become a primary carer for your mom as her dementia progressed?
Virginia:Well, I'll tell you what happened. We think he knew that something was going on, something was cooking with mom's brain, but he suddenly passed from a heart attack four days before retiring.
Teepa:Oh, okay, were you around at all when the two of them were interacting before he passed?
Virginia:Not much. We were an hour's drive. We got together for holidays. A dad's birthday had just happened. We had dinners together, and we'd take vacations together.
Teepa:But real short, little events like that.
Virginia:Being an hour away.
Teepa:Yeah, it's pretty common for spouses, particularly as the symptoms start to pile up a little bit, to actually change in interactions and to become harsher or sharper. Or "What did I tell you? You've already asked me that five times." I mean,"Why are you asking me that question? You know what's going on here? You know that." Just sort of that edgy thing that many spouses get because they're frustrated with hearing or asking or saying the same story, or it just you didn't know what was going on. So the person living with dementia, it's not uncommon at all for them to think they've got a different spouse than the one they used to have. And so they actually divided into two people. So there's the spouse I have now and the one I used to have. And so it actually divides up, and it's most common with a dementia called Lewy body, but not necessarily, but the more my brain has some different wiring as the disease moves on, the easier it is for my brain to believe that's my other husband. That's not the one I want. I want my husband back. You know, my first husband, not the second one. And it's called imposter syndrome, and it's actually a phenomena that people experience where they think the person that they're with is an imposter, because that person is not my person. My person is really wonderful. They are sweet and I love them, and you are so freaking mean. You're not my daughter. You're the substitute daughter.
Virginia:Oh, my word. See, this is all part of this being a detective thing.
Teepa:Yeah, it is. It's getting super curious. You know, it was really hard. You were not at that point able to do that, but you could say "So Mom, you're talking about your second husband, still named Greg or name something different?"
Virginia:And my reaction was,"You didn't have a second husband."
Teepa:I don't doubt it. It was really hard to let go of losing your dad while you were losing your mom and having lost your dad and still losing your mom.
Virginia:Oh, horrible, horrible. The thing I'm thankful about is that dad did not have to see mom go through Alzheimer's,
Teepa:For sure, but it was hard for you to not have her know that that was the guy who stayed with her to the very end.
Virginia:So sweet. Okay, so this is a question from my neighbor who's caring for her husband. He has prescription drugs, one for heart. I don't know what they all are, but he has been refusing to swallow pills. He spits them out. She has tried grinding them up to put them in his food. For some reason he knows they're in there, and her physician said,"Well, guess there's nothing we can do."
Teepa:Okay, interesting. All right, let's break this down a little bit. So this is the curiosity again, many meds, when you grind them down, because that covering is on there, it's on there to hide the taste, because many medications have a very bitter, sour taste. And when you get rid of the outer capsule, it's like ew. So even when you grind them, if you put them in food, it is not uncommon for some people to say, "I think you're trying to poison me," because he can taste it. He can taste it in the food because it's bitter, and he knows that somebody's doing something. Even when you grind it, what also happens is you can't grind it really smooth. I mean, it's not a skill you have. And so there's these bits and pieces. So I'll have people that are go *spit* the little bits out of it, so you don't know quite how much they're getting. Now, when they're whole, the problem is the person, it's not that they're refusing- they can't swallow pills and water, because it's actually pretty complicated. You have to put the pill in. You have to, well, moisten your mouth first. That's the rule. If you are going to take pills, moisten the mouth with a couple sips of water, so the pill is less likely to get stuck on a dry mouth. And many people who are living with dementia have dry mouths because either mouth breathing or not taking in as much fluid. So have them take a couple of sips of water and then put the pill in and then try to swallow. For some people, that's a help. For other people, we've got to quit giving them the pill. But what we want to do is put it in strawberry jam. So crush it up, but then put it in strawberry jam. Because what does strawberry jam have? Two characteristics. What do you know about strawberry jam?
Virginia:Sweet.
Teepa:Super sweet. It's so sweet it'll override the flavor of almost anything.
Steve:And it has seeds.
Teepa:And it has seeds in it. Tick. So your brain automatically thinks, "Oh, there is going to be texture in strawberry jam. Why wouldn't there be?" So you mix it in, put it on a small corner of toast, and you cut your toast in triangles so that the end of the toast can go in easier than the square at the toast, I've had a lot of success with it. I mean, I've certainly had some people still not want it, but it's not because it tastes bitter, you know? It's just, I don't want that jam. Okay, fine. What else can we use? I've got to find something that also has some texture and some extra sweet. You got to make it extra sweetie. Some people will do ice cream with sprinkles or that kind of stuff on it, but you have to add some sweet so I'll do chocolate sauce and then add some sprinkles on top, something like that. But we have to get the brain to not notice, and it works better without fluids in general. But those are some really easy ways to try something one more time before we start saying, I give up. And then the third is to say, are there any of these that could be ground by a pharmacy and created into a compound that is a different delivery so you get your thing actually prepared, and you're not trying to grind it. It actually is prepared that way.
Virginia:Good suggestions. Thanks. Okay, next issue, refusing to shower or bathe. My mom went through a period of being afraid of water.
Teepa:Yeah, it's not uncommon. Water is clear, so you can't really see it till it hits you. And spray that we see as not that problematic. It's like,"Where is it. Stop, stop it." And in particular, if it comes from above. So is it a handheld shower that you can keep down low, or is it an overhead shower that's going to hit me wherever? And then one of the things that I make sure I'm always doing is, if we're going to shower, we're both holding the shower head so they know where it's going next, and what I'll do, I usually will pause and say, Okay, is it bathing and showering, or is it showering and bathing in the shower that you're talking about? Because I have had people that I can help at the sink just fine. They will participate. They're fine with cleaning up the pits, the bottom, doing the high spots, making sure we sit and do the feet. They don't want to get in the shower. It's overwhelming. It's too much. It's scary. They don't like the enclosure. They don't like the water. They don't like the slippy. They don't like the cold, because water, when it hits you, is a conductor, so it will drop your skin temperature to room temperature. So if you think about it, you get wet, and then you try to soap up. Well, your skin is picking up 78.5 degrees. 78 degrees. It's a lot colder than your body, 98.6. So it's getting cold really fast. And then we add the warm water,"Ow, you're burning me," and then we go back to the cold air. So I will have people drape someone in a great big beach towel, and then add the water to the beach towel, because the beach towel serves as insulation. It keeps the air from moving across your skin. It keeps the water from moving on your skin. And then you have the opening in the front, and you come in under the opening to do the pits, but you can actually allow the person to get totally wet through the beach towel, and then just drop the beach towel and plan to deal with it later. But I've gotten the person wet and now they're ready to get out. And mean, we did the soap, then we rinsed the pits, because we just lift it up, then do up underneath, and they're done. So I've had more success there.
Steve:How about washing- I don't have to worry about this anymore. I don't have any hair. But how about washing hair?
Teepa:With your hair it's really tricky. So one thing I'll do is I'll take a hand towel and I'll fold it up, and I'll sometimes even get elastic and I'll put it across here, because one of the really hard parts is I don't want water in my face, and so with their other hand in my hand, then what we're doing is we're wetting back here, but all the moisture is being absorbed by this. And then I rub that back like that. And then we'll go ahead and do the hair.
Steve:So you protect their face, kind of like a baby when you actually cover their face.
Teepa:Exactly because it's that stuff that's running in my- I don't want it. And I will also say some women, typically 78 to 80 and above, they got their hair done every few weeks or every other week. And for them, wetting their hair is equivalent to ruining what their hairdresser just did, and they will not tolerate it. They will be furious. I mean, "Don't do that!" And so it's like, okay, so I maybe need to work on a chair that I can tip back and a support here. So we go to the hair salon and do the hair separately from the shower. I've been known to do that as well. I'll have people put their little head bonnets on, and we don't wash their hair in the shower, and it makes it better. And other people that simply will not take a shower, it's not going to happen. So we do wash ups and we figure out how to do the hair otherwise. It turns out, and this is important for folks to know, that guesstimate estimates are approximately 70% of people who will not shower, not going to do it, have been sexually or physically abused at some point in their life, and that's why they won't go into that space and feel vulnerable with all your clothes off.
Virginia:I know my mom was always very modest, so the towel thing..
Teepa:The towel thing, really is helpful. I've had a huge number of people tolerate showering with the towel thing for so many reasons. But when somebody is super resistive, if you look in their history and you may only suspect it, and it was often a family member, a person that they should have been able to trust, that's a bad thing, because it's both males and females. Because little boys sometimes get taken advantage of as well. So these are the histories and the stories people can't tell us and would never have shared either. Again, I use the word compassion, if we can really be thoughtful and compassionate and realize maybe there's a story there I don't know. And rather than getting frustrated, realize, "Wow." I will also say when I use hand under hand to help somebody clean themselves, it makes a huge difference, because their hand going to their body, even though my hand is the one doing most of the work, because we're doing it together, their brain believes that they're doing it, and so there's not resistance, because..
Virginia:Because your hands are together.
Teepa:Our hands are together, and their hand is over mine. And so without thinking, they actually think they're doing it, and I'm the one with the greater skill, but they're along for the ride. So it's just, you know, it's a way to do that.
Virginia:I've heard you say that about teeth brushing.
Teepa:Yeah, because I can give you better feedback when your hand is with mine, because that hurt and I'll give you a little jerk and it doesn't mean I want to hurt you. It just means that hurt, and I need you to know that. And it's like, "Oh, we should probably get that tooth looked at," because the gum line may be receding, or maybe they've got an abscess, or maybe something's going on there. And so it's a way for us to communicate when words aren't working for us anymore.
Steve:While you're on that topic, what about dentist visits?
Teepa:It's really hard when somebody's kept their teeth their whole life, you're thinking, I want them to keep going. It turns out, probably two to five years before we get concerned about teeth, we should have been concerned about teeth, because people were skipping areas, not doing the flossing that we thought they were doing. And so they've got some pieces and bits before we actually pick up on it. But what we do know is that dentists who are open to the idea of having a care partner there who can pump the hands and provide some emotional support, and they learn how to use a block, a foam block, that can be placed in and sort of stabilized. And then the partner is saying, "Okay, he's going to work on your teeth. Okay, I need you to work with me. Okay, breathe with me. You're doing great. You're doing fantastic. He's cleaning off those teeth. I know you don't like that. I don't blame you." And talk them through it. It's amazing what we can get through. And I would say we can save teeth and we can also save hearts, because we know that oral care is tightly connected to cardiac health, because infections that get into the bloodstream really problematic for your heart, and that desire for sugar, oh, yeah, makes it harder, because that glucose hunt is strong. It's like, "Can I have a cookie? I just want one cookie." "Yeah but you've had five cookies." "I didn't have any cookies. I didn't eat any. Wasn't me."
Virginia:With my mom Iit was chocolate bars.
Teepa:Oh, yeah. Well, that too, yeah.
Virginia:Okay, here's one for you. When the person you're caring for starts to get in the habit of sleeping during the day, and then they're awake all night. I have no idea what to tell my neighbor when she tells me she's got that problem.
Teepa:I'm curious. Is he seeing things that aren't there sometimes? Is he talking about seeing children or animals or people in the house?
Virginia:No, like you do with Lewy body.
Teepa:Like Lewy body. I mean, that's always my first question. Is there any other symptoms that make me worry about the possibility of Lewy body, which will be nighttime wakefulness, for sure, as one of the core symptoms.
Virginia:Really?
Teepa:Oh yeah, insomnia is one of the most common symptoms for people with Lewy Body, and they've often had insomnia for years before they get diagnosed. And it has to do with it gets dark outside, the brain goes,"Oh no, oh no. What's going on?" And then it starts creating things that are going on. There's people trying to break in, there's people in the basement. There are these children, and I'm going to tell you, they take the toilet paper. What I did is I hid the toilet paper because I was afraid somebody would take it. But now it's missing. See, I told you they came in here. I saw them. And my brain, actually, if you took images of my brain, you would see it, literally seeing something. But there's nothing remarkable there. There's just a bathroom. But no, I see people where you don't see them. So the reason I asked about are they seeing people, or are they up all night? For that reason, Lewy Body is is a little different. We have to be careful. We don't want to treat the symptom with an antipsychotic, because it can increase the risk of falls dramatically, or make swallowing problematic, or cause problems with the ability to speak for about 50% of people. It's a high risk thing. For the other 50% yeah, you can do it. But, I mean, do we want to take a risk with the 50% who do have symptoms? If the person is developing this habit of sleeping in the day, I'm still curious about why. And sometimes, what I'll find out is, at nighttime, it's quieter, and because it's quieter at night, they like being up at night because they're sort of a night owl, and they might have been for, like, most of their life, or they might like it now because there's less stuff going on, and they get active and they do things at night, but they're not eating well at night. They've not got a lot of fuel on board, and they're burning their fuel. Their blood sugar starts to drop. And then in the morning, they're exhausted, so they got to go rest. And so it becomes this cycling. So one of the things to think about doing is in relatively early in the night, see if you can get them to eat something that's a complex carbohydrate in a protein, like peanut butter on graham crackers or something like that. And see if you can have them do that. And then maybe some warm something to drink, whether it's warm water, warm decaf tea, warm decaf coffee, hot chocolate, that's not got caffeine in it. And then put on some kind of music and see if you can get them to start to rest or relax in a recliner or in a rocking chair. And see if you can get them in a common space or in the living room, instead of the bedroom, to chill out and go on to sleep.
Virginia:You mean, just have them sleep, maybe in that recliner chair all night. Who cares?
Teepa:Exactly. Because I'd rather have them sleep at night in a recliner than be up all night roaming the building and then want to sleep during the day. I mean, because I need some sleep. And if it means that I'm sleeping on the couch and they're sleeping on the recliner, at least I'm getting some rest. You know, it's a pattern. And so once we get that sort of worked out a little bit, then I realized, "Oh, okay, so I'm going to give him something to eat, and now I can try to move into the bedroom." But if I try to go to the bedroom right away, guess what happens? I'm not ready to go to bed, so we're right back up roaming. So we want to break it down into smaller pieces for solving the puzzle. So I'm really curious if can I gave him to go to sleep in front of the TV set, like in a recliner, even. I don't know, Steve, have you ever done that?
Steve:I do that myself. So I understand that concept.
Teepa:I do it too. And so one of those things is to realize, wow, for some of us, that's a comfortable place to go to sleep. We feel safe there, and our eyes shut and we we just tune out. And that's fine, because that means we're getting some rest at least. And it's a start. It's not the end of the story, but it's a start of a story.
Virginia:Caregivers need sleep.
Teepa:Yeah, and then we can work on the bedroom. We try to do too much at once. They just fight us. They don't want to do that, and they're tired.
Steve:It's interesting that so much of you, what you've been talking about is the caregiver adapting to the situation, instead of trying to enforce their perception about how it ought to be done.
Teepa:I have yet to cure or fix dementia. I mean, I've done a lot of work in the area, but that hasn't worked for me. So what I have been able to do is..
Virginia:We wish you could.
Teepa:I know it would be nice. Not my job.
Virginia:Would be nice.
Teepa:What I would say, Steve, the other thing that's interesting about what you said there is, because their brain is changing, we have to change.
Steve:It's that practical. It's that practical.
Teepa:Oh, okay, well, maybe you're in the female category I've got to change to match their changing brain, because I can't change it back. I mean, I can't make it go like it was. So if I can accept that place of like, huh, I've got to let that go, because that's not- I'm not going to be able to take them back to how it was. So maybe piecemeal, I can, maybe not. But if I'm in a better place than I was yesterday, or if I'm in having fewer incidents than I was having yesterday, hey, it's sort of moving in the right direction
Virginia:Right? Okay, so when the care partner is being followed everywhere, around the house, in the yard, and you have absolutely no few minutes to yourself, how do you handle that? for this particular activity. Now you're going to put reading material. I'm quirky that way, I guess. Anyway. Well, you know, some of us just go in there to get the job done and leave. Other people use it as their quiet space. Kind of an escape.
Steve:Kind of an oasis.
Teepa:Literally like that. I mean, it's important for them to have that oasis, and we're teasing, but it's super important for people to have a space.
Virginia:So I remember when caring for my mom, I would solve a problem, and I would think, this is great, and then, boom, a new problem would come up. And I used to call that process bumping into walls. I understand that you have a really descriptive way using merry go round, then a roller coaster. So tell us about that, and then we'll wrap up.
Teepa:So you're like, "Okay, it's better. It's all working." And then it's like, Ah, no, it's not. And then you whip around and it's like, back up. Okay, I figured that one out. Here it comes again. No, because this thing we call dementia is ever changing. It's so dynamic we think we got it, and it's like son of a gun if it didn't trick me again. Because we want stable and static, and we want to get it and we want to hold on to it. We want it like we want to be successful. And you think, yeah, and then, but, you know, roller coasters, really, it varies. It's like, this was a long hit that one's like, real short. For some people now, believe it or not, there are really, there are dementias, like vascular that people can stabilize for a long time. And you think, yeah, this is great. And then boom, you're in the ER again. Or Lewy body, where you think, "Okay, this is going to be one of those slow cycles. So they're, they're sleeping, well, everything's going great." And then it's like, oh, well, the bottom just fell out of that. Or I get a urinary tract infection. I mean, it's, it's all these things that can happen and do happen. You know, somebody I was counting on didn't show up. That's like, no, no, no.
Virginia:It's a tough, tough job being a caregiver. Steve, do you have any more questions for Teepa before we wrap up today?
Steve:Yeah I have lots of questions, but I think that she's done an excellent job of describing some typical situations and some really wonderful tips on how to deal with them, you are obviously experienced, and you have a wonderful style about describing how to deal with it from a positive perspective.
Virginia:It's so true, and I do want to tell our listeners that we will put links toTeepa's website, YouTube- how many recordings, Videos do you have?
Teepa:I have no idea anymore. People say how many videos you've done is like, "I don't know, like, a lot." I mean, because I have room where they've asked me to do little video clips. I have YouTube. We have Tiktok. We've done things with emergency services folks. I mean, you know, like we try to be responsive.
Virginia:Yes, it's just so wonderfully helpful. And our listeners need to look you up and learn. And I hope everybody's learned a lot today. I know I have. And thank you for joining us today Teepa, we really appreciate it.
Teepa:Thank you all for the opportunity.
Virginia:And to our listeners, we'll be back soon for another episode of Spotlight on Care.
Steve:Spotlight on Care is produced by the University of California Irvine, Institute on Memory Impairments and Neurological Disorders, UCI MIND. Interviews focus on personal caregiving journeys and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention, or treatment should seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast. Wherever you listen for more information, visit mind.uci.edu.
