In a recent post in the Nurse Avenue Networking Group we asked what experts they’d like to interview. One of those experts was Teepa Snow, a leading expert and educator on dementia and the care that accompanies it.
We had the pleasure of sitting down with Teepa and asking her a few questions on how to properly care for people living with dementia. Here’s her answers:
Teepa Snow: Okay. So when I was really young, like a teenager, I was an NA in a long-term care facility in Pennsylvania, before there was certification. So you're up your way, you have your personal care workers. But down this way, we have certified nursing assistants.
But back when I started, there was no certification. You simply went to a facility, you followed somebody around for 3 days, and then you got your list of names of people to take care of.
So that was my teenage sort of years. So I worked in a cinderblock nursing home, and I had some really interesting characters, but unfortunately back at that time, cause you know, I'm in my sixties. So back at that time, the primary focus in nursing homes was tie people up because they would likely fall if they got up and moved around and they're incontinent a lot of the time.
And this was before disposable products. So we washed everything. We did not wear gloves. And we had cloth products. So you had to put people in a pad, you had to snap it. You had to take it off. You had to clean them with wash cloths. You had to then untie them, dry them and tie them back. I mean, that was, unfortunately, my experience was - that was what you did.
And so you worked in pairs and these were incredibly impaired individuals, partly because that was also the period of time when Haloperidol was advertised as a very safe drug. That should be used almost for everybody because it keeps people calm.
Of course, what it also causes is massive tardive dyskinesia. And so the rest of your time was spent trying to get food in as their tongues were pushing food out and they were having swallowing problems and they were wheelchair bound and it was before the days of lifts.
So my introduction to care and nursing care was primarily in a facility where it was heavy work. It wasn't very risky - people need a lot of support and care. And unfortunately, people living with dementia were being sent out of psychiatric settings by then, but people didn't know how to manage them. And so they were part of the mix, but they were for sure, the ones who initially it was sheets. And then it became devices, where we thought our best method of keeping them safe was to keep them tied up.
Well, it didn't take me long to go. Yeah, I'm not, this is not my thing. I like interacting with people. I like being part of a person's day because I'd started off in developmental disabilities. And so this was like eh, my grandfather had dementia. We were having trouble with caring for him at home.
And so they said, well, if you would work here, we, we will bring him in. He of course got fired, cause he tried to get in bed with another lady thinking it was my grandma. So he came back home and I did support at home. So that was sort of how my first journey into the world of care and nursing started.
After that, I continued to do some weekends as I went to Duke as an undergraduate. I wasn't sure what I wanted to do for sure. I did care on the weekends in a little nursing home in rural North Carolina, where I got to meet some really amazing people who were very interesting and times were changing a little bit, not much, but a little bit.
Again, we still used Haldol, but we understood then, Ooh, you didn't want to use it all the time, but it was still used pretty extensively. And a lot of people living with dementia were still deemed to be problems and needed to be managed. But if you did the right thing, you could get people to do things and I was pretty good at figuring out how to get people to do things.
So I did that on weekends while I went to Duke and I worked at the VA as a volunteer candy striper. So that was sort of some of my intro. And then when I finished at Duke, I still didn't know what I wanted to do. So I started working at a day center for kids with developmental disabilities and young adults with autism and older adults with dementia, in the basement of a church.
When I wasn't doing something else, trying to figure out what I wanted to do. And, an OT came over, cause I was working with a variety of people, and she said “we're starting a program at UNC.” So I went and I got my masters and met a nurse during that time, who was at one of the first continuing care retirement communities that started up. And so I was the first OT and she was the director of nursing.
And we started working together at the community and developed an adult day program that used children with developmental disabilities as a day center. And they became the helpers and we did an intergenerational program there, which was kind of fun.
And then I started working as a continuing education trainer for nursing with my nurse colleague and I then taught at UNC taught at Duke, did continuing ed on bowel, bladder aging issues and then taught at the medical school, as part of an interdisciplinary team. And we did a lot of transdisciplinary training. So my background is in occupational therapy, but it turns out that I ended up doing a lot that collaborates so closely with nursing. And I've done so much training for nurses who provide the massive amount of care that is provided.
And I went into head injury and then I moved over to dementia. Cause it's just a curiosity, a huge curiosity about how brains work.
“So tell me, tell me a little bit about what you know about your mom's condition.
Tell me sort of what you're aware of.
What have you heard physicians say?
Tell me what you're thinking is going on with your mom and where do you see this going, as she’s staying with us?”
So I always start with, what do they know? What do they think? What do they believe? Because before I introduce anything, I've got to figure out what's their baseline.
And so I'm a firm believer in whether I'm talking to a person who's living with dementia, whether I'm talking to a family member, my first question is a curiosity about what do they know? So tell me a little bit about what the doctors have said to you and what your understanding of what's happening is because I want to be thoughtful.
I don't want to crush somebody, but I don't want to have an argument with somebody either. So if they say, “well, I think my mom has Alzheimer's not dementia.”
“Okay, so tell me what your understanding of the difference between those two are, because I'm curious about, you know, what you've been told so far. And tell me a little bit about what you see happening as this disease progresses.”
And then, if they say, well, you know, “I think with the medicines…..”
“Oh, okay. So you're thinking with, uh, the acetylcholine that she's on and the glutamate moderator”, you know, so I use the brand names probably cause that's what she's familiar with.
“You're thinking that that's going to slow the disease down.”
Oh, Oh. “So now was that something the doctor said or just something you're thinking because medicines help? Okay. So I think it's time for us to talk a little bit about, what the situation is, given what's going on with your mom.”
“It's more than likely she has a type of dementia and for all dementias, we don't really have a way to slow them down right now. We do have a way to help with symptoms sometimes. And the medicine she's taking, the goal of those medicines is really to help with some symptoms, but it's not actually going to change the disease.”
“And I hate that. I mean, I hate it for you and I hate it for her, but the reality is the dementia is probably going to progress and it's going to get more, more and more problematic as more and more of her brain is changing due to her dementia.
So what do you think about that?
When I say that, how are you feeling about that?”
So that's how I, I tend to start conversations cause I, number one, want to know where they are, but then wherever they are, I want to move them forward a little bit in the understanding of progression of change.
But I try not to use the word loss and death right away, because I don't want people giving up hope on their individual. I don't want them thinking that it's all about what the person isn't able to do.
And so the next thing we'll often talk about is “tell me a little bit about what your mom is still doing and what you've noticed has changed.”
So that we can sort of get a sense of her baseline, her understanding of her mom's baseline and you know, like, well, she can't do anything. Okay. “So you're having to help her get dressed.”
“Oh no. Well she can dress herself.”
I mean, cause it's amazing. How many people, when you say, well, I have to do everything and then you say, so, um, you have to - she's incontinent?”
“Oh no. Well she still goes to the bathroom.”
“Okay. So you're having to help her eat?”
“No, no. She can feed herself. I mean, it's not that.”
And it's like, so “tell me more when you say you're doing everything, tell me what, what that means,” because some family members truly are so overwhelmed with having to take on a care role, that for them managing the finances, managing the house, managing the medicines, managing going into the doctor's offices, it's a lot.
And so for them it feels like “she calls me every day and asks me at least three times, when is daddy coming home?”
“Okay. So it sounds like she's lost in time and place in her life. And so when you're talking to her, tell me a little bit about what you say.”
Because then that tells me how able or unable the person is to appreciate, well, if the person thinks their husband is still alive and they've been dead for five years, high probability, she's not eating that well, whatever she's eating and she's probably not keeping up with what goes on in a day and more than likely she's not bathing regularly.
And so, I'm already doing an inventory in my head of oh boy. Okay. So her sense of the end of the disease is really short of where the disease will end.
And so, we’ve got some road to cover here, but I've got to do it in baby bites.
Teepa Snow: So I try not to think in terms of absolute. So I'll say, let's look at the timing of the visit. Let's look at the environment of the visit and let's look at the activity of the visit. And let's look at who else is around. Because what we want to do is plan for that the transition from being there to not being there is going to be difficult for the resident.
So what we may want to do is not have it be a solo visit. We may want to always have a third party involved and we may want to have a functional activity that's going on.
And we want the next up activity to be one that, that individual who has dementia really enjoys. And we want to train the care person, the family member to say,
“Hey mom, I'm going to go run to the store. What can I get you? I just realized I forgot to get something. What can I get you? Would you rather have something salty or something sweet to eat? I'll be back as soon as I can. Let me go do that. You're getting busy doing this.”
So it's the idea that I don't want people not to spend time, but I may ask them, “can you come in the morning because I'll tell you what, visiting in the afternoon, is really harder for her.”
Because at the end of the day, you want to go home and you are leaving and she's going to want to go with you. If you come in the morning and you say, well, “I've got to get to work. I'll see you as soon as I can.”
The words I need them to rehearse is - you can't say to the person, “mom, I'm going to go home. I'll see you tomorrow. Sweetheart, I'm going to go home. I'll see you tomorrow.”
That is one of the least helpful things to say, because it says, I get to go. You have to stay. And what it raises is why are you doing this to me? Why, why can't I come with you? I'll be good. I promise, I don't know what I did that you put me here, because it raises all this sense of abandonment and that you don't want me.
And so helping a family member change their language and we rehearse it ahead of time is critical to reducing the risk of a distress.
Teepa Snow: Okay. So can you, can you give me a sort of an idea of one that might be, I mean, there's all kinds like there's guys trying to break in …..
Teepa Snow: “Okay. So, wow. So it sounds like you saw somebody coming in and they took stuff that is really scary. Wow. So now tell me about that. Is that something that's happened before? Is this the first time it's happened?”
Teepa Snow: “The second time. Okay. Now did it seem like it was the same group that was breaking in or was it a different group this time?”
Teepa Snow: “It's always the same people. Wow. That is not comfortable at all. So they come in when it's dark out, it sounds like.”
Teepa Snow: “Okay. Well that sounds like something we should definitely investigate because that's not okay. People coming in your room and taken things. Now, what was it? Valuable stuff or not valuable?”
Teepa Snow: “Well, yeah, no, we don't want that gone. Okay. So that's not okay. So, it sounds like I should fill out a report, that we don't want that happening anymore. Now I'm going to do that, and I’ll tell you what I'm also going to do, is I'm going to stop by this evening and I'm going to come by and see whether or not we can figure this out.”
Because what it says to me is the person has either moved stuff from where they usually keep it and now they don't see it where they usually see it and their brain confabulates the story or their visual system, and it happens most frequently with Lewy body disease. They have visualized their greatest fear in reality, more in the evening or at night than during the day classically, and it's taking things of value. It happens exactly the same.
So here's what my best guess is - earlier in the day or earlier in the week, maybe an aide came in or somebody came in and took their dirty clothes for washing. Their brain took that data and went blahhhhh… because they're really not comfortable. And so by saying, “I'll come back and see if we can figure this out.” What I've said is you are not alone in this. I hear what you're saying. I got your data. I want data from you.
Because the more I know about what the story is, the more I can sort of seek out, I might even say to family members, “have they ever had a theft in their house? Have there been many incidents lately where she thinks people have taken things or moved things on her?”
Because the last thing I want her to do is get a paranoid kind of feel to it, which is “nobody believes me. Everybody's against me. Everybody thinks I'm nuts.”
That's not helpful because then that closes her off to me. And what she came to tell the person she's reporting to is “I saw something” and whether it's accurate or inaccurate, my curiosity makes it okay for us to continue to have a conversation about it. But I'm not gonna reinforce it and, and say things like, “Oh, well, I'll get them arrested.”
I'll fill out a report, and trust me, I will fill out a report, that says, she's starting to recognize, this is the second time it’s happened in the evening. Why don't we actually come to her room, turn the lights on and do some things in their room about that time. So that there's less not going on.
And we might even notice, you know, what's happening, she's watching or something, some kind of TV program. And unfortunately, due to her dementia, she's interpreting that as a real event.
And it's on every afternoon at X time, then what we need to do is have the TV, not functional at that time.
Teepa Snow: Yeah - we’ve got to figure out what's driving it. We're looking for those triggers. We're trying to investigate the environment, her history, maybe when she's getting her medications, what else has gone on that day. Has there been an incident earlier in the day where somebody came in and empty the trash cans?
So we have to throw a pretty wide net, particularly with Lewy body disease more than just straight Alzheimer's because they have the highest risk for confabulatory and visual hallucinations that involve animals, children or people.
Teepa Snow: Yeah, worriers! High risk worriers who have cortisol happening all the time. Insecure worriers. People who’ve had a history of having head injuries or having this anxiety or having depression in their background that's not that well managed.
People who, as a rule, are not very comfortable in their world. And they're always trying to figure things out, but they're not good at it. So people who can't organize themselves. So disorganized people who are uncomfortable being disorganized because they can't let it go, but they can't figure it out. And so it's this, it's this sort of hamster wheel thing.
And so they keep putting out cortisol, putting out cortisol, putting out --- and cortisol is really so unhealthy for both the immune system, but for the brain, because it causes blood sugars to shoot up and then drop and then you put more blood sugar, you add sugar to the system. So you can, and then “I need caffeine because I've got to stay alert.”
And so this hyper-drive that they get in is really incredibly risky for the human brain. And it's a pattern of their living. I mean, it's not, it's not a short term thing - it’s high risk for the next generation. Nurses know them well because “how’s my mother doing. I'm just a little worried because you know, last night she called me five times. So what are you doing with her medication?”
These are the people who like to micromanage the diabetes. They're the ones that nurses are like ‘ahhhhhhhh!’ If she calls me one more freaking time. I'm going to lose my mind.
I mean, it's that idea that nobody's being mean. It's just like, Oh my gosh, she's setting herself up, trying to figure out ways to broaden our care plan, to care for the family member who's showing us those symptoms because we already know it might be in their gene pool. The last thing we need is her becoming the next person you care for.
Teepa Snow: One of the things I’ll say is what’s this doing for you, because I'm getting concerned about your cortisol.
And we talk about cortisol. We talk about, “so tell me, you know, I know you're trying to manage this. Can I give you something else to try to help me with, can you help me with this and giving them something that they can organize and they can hold on to, and then giving them some things, but by giving them more detail, that's not the answer.
They will just wear you out no matter how much you give them, it's never quite enough. And you all know that you know who I'm talking about.
Teepa Snow: Yeah. So I actually do a whole program on that because what we're missing is comfort. What the family hears is, you know, we're not going to do any of those other things, but what we don't do is lift up the comfort as a major thing we are going to do.
And when we think about comfort at the end of dementia is very different than comfort at the end of cancer, we have a very different pain profile. The pain that most people at the end of dementia experience is soft tissue pain because their muscles are turned on way too much. And they have lots of joint pain but they don't have bone pain and they don't have metastatic pain.
What they're having is pain of not being able to do. Pain of removal from life. Pain of not having a voice. Pain of seeing something and not being able to move my arm out to reach it. Pain of not being able to take.
“I mean, I don't want food anymore and people are still putting it in. People not being able to recognize my signals in my symptoms of, I need to let go. Can you let go? And finding ways of connecting and touching that are less scary.”
Because as my care needs become more massive, we start relying on equipment. And when we rely on equipment, we remove touch and connection all too often. Although it is not required, it commonly happens because “I'm going to pull the lift. Okay. I'm going to bring you up and you hear “ahhh, ahhhhh, ahhhhhhhhhhh” and we just keep going, “It's okay. It's okay. It's okay. You'll be there in just a second. It's just the bed, it's okay. I'm going to flip you. “Ahhhhhhh!!!”
“Don't pinch. Don't pitch. Don't pitch.” And what's happening is there's a high level of distress there. And what we missed was the high level of distress.
And rather than acknowledging, “I'm going to shift you you'll feel my hands. You're going to feel my hands on three. And we're going to start to turn. Yeah. Okay. I know it's uncomfortable. It's really uncomfortable. Take a deep breath with me. Now, blow it out. There you go. And now we're going to turn, go on. Good good, you got it.”
How to use our voice, how to use our touch, how to use rhythm, to offer support. How to use comfort and warmth. And there's, there's a host of things we could be doing.
Teepa Snow: Well if you want more opportunities, we have lots of them. Some of them are free. Some of them cost a little bit, but if you have other questions, come and ask Teepa anything on a Wednesday evening, once a month.
And I'm on Facebook every morning at 8 too!
In 2005, Teepa Snow founded Positive Approach® to Care (PAC), a company that provides dementia care training, services, and products around the world. A core principle of PAC is that, in order to obtain the relationships and outcomes that are desired, the first and most important shift must originate with each person’s own willingness and ability to change.
If you have more questions for Teepa don't forget to catch her live on Facebook every week at 8am eastern standard time.
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