Ask Teepa Anything: Real-World Solutions for Dementia Caregivers

Falls, restless nights, confusing medications, and conversations that loop — these everyday dilemmas can turn caregiving for those with dementia into a tug-of-war. Teepa Snow, an occupational therapist with more than 40 years of clinical and academic experience, joins Being Patient to offer practical solutions and answer our readers’ caregiving questions. 

Snow developed the GEMS States of Brain Change and the Positive Approach training strategies. She’s the founder of Positive Approach to Care and co-founder of the Snow Approach Foundation in Hillsborough, North Carolina. 

In this conversation with Being Patient founder, Deborah Kan, Snow discusses safer techniques for assisting someone off the floor without lifting, how to build a care plan, disease progression, and communication strategies that rely on rhythm and action — among other practical topics caregivers face every day.

Being Patient: What do you do when someone with Alzheimer’s falls and can’t get up off the floor? We had a situation where my mom fell and the caregivers had to call 911 because they couldn’t get her up. They were worried something was wrong, and once the paramedics arrived, she got up and walked to the bathroom herself. She was okay, but there was some disconnect happening. So tell me what was going on there?

Teepa Snow: Okay, so a couple of things. When people end up on the floor, if they end up just slipping or sliding to the floor, there’s usually this [feeling of], “What in the world? How did that happen?” Now they’re down there, and it’s like, “Okay, well, it’s been a long time since I was on the floor and had to organize myself to get back up.”

If you think about it, it’s not like any other situation. If you’re in the bed, you throw your legs off. They dangle down. You can get yourself up. On the floor there’s a finite surface, and you have to have greater leg flexibility, or you have to figure out how to roll over, but even when you do that, then you have to be able to get your leg up underneath you, unless you use a chair.

So the question is, did people know how to cue her? When she’s sitting down on her bum on the floor, and you have her leaning against something, or she’s all the way down on the floor lying down, what is the first step to getting up out of that space? Unless we get down there in that position and start to explore, “How would I get up? What if I don’t have mobility on that side? What if I’ve had a hip fracture, or I have really bad arthritis, or I have hip pain? If I don’t know how to cue and she doesn’t know how to initiate it spontaneously, we’re stuck.” However, when somebody else comes on the scene and somebody says, “Oh, okay, well, tell you what, roll over and you can get up,” and it’s like, boom. And she does it. But the cue was an unfamiliar person not worried about what just happened.

Being Patient: For people helping a loved one with dementia, what should we all be thinking about in terms of a care plan?

Snow: I think about the person. Who’ve they been? What have they liked? What have they disliked? What’s been their roles and responsibilities? Who did they have relationships with? What was that like? 

I think about how they spent their time, what was their routine, their schedule. What were things they were good at? What were things they were not really good at? And where are they now? So I look back, and then I go, Okay, how is this looking now? They’re going to be similar, but they’re going to start being different.

Then I start looking for people, the people around them: what are their abilities? What is my history with them? Who had what relationship, and who is in what relationship now? Have people died? Do we have a disconnect? Do we have fighting going on? If I need something to happen in the care plan, who do I want to use? Is there a way to learn some new skills there? 

Second piece of the puzzle [from the point of view of the person with dementia]: what is happening to my body and my brain and my psychological well-being, my sensory — what’s happening to my eyesight, my hearing, my taste, smell, touch? What’s happening to me as a human? Do I have arthritis? Because when you come up with a care plan, you have to keep all that in mind. Do I have depression, anxiety? Do I have a long mental health history or have I been pretty healthy up to recently? How do I feel about my changes? How many meds am I on? How do they interact? 

And then we want to look at the environment in which the care is taking place. Is this matching? Is it not matching what the person needs? Are they getting what they like and want from the environment, whether it’s physical or social, or whether it’s the right setting for the person anymore? And that’s always a hard one.

And then, of course, we have [again, from the point of view of the person with dementia]: what’s my dementia? Where am I with my dementia? How many dementias do I have? What kind of dementia? What’s still working, what’s not working.

And then over on the other side is, how am I spending my time? I have to come up with a care plan for now, and now I have to think about the future [as well]. So it’s no wonder it’s overwhelming, because I’m actually asking people to come up with, “What’s good for Teepa now, but then as we move forward, what’s going to be good for Teepa as she progresses?”

Being Patient:  Barry has asked, “How bad does Alzheimer’s get? Can I stay at home without going into a care home?”

Snow: Alzheimer’s, and all forms of dementia, will eventually [cause you to] neurodeteriorate. If nothing else comes into your life and takes you out of this life before, at some point this condition will take away your ability to function.

At first, it often messes with memory and sometimes word finding or the ability to see and understand objects out there, or it might be hard to organize yourself to get things done because you’re having trouble with thinking. But, eventually, it affects things like breathing — how do you breathe? How do you suck? How do you swallow? How do you take in nourishment, make use of nourishment? And then what do you do with the waste products that come out?

Eventually, you will need massive amounts of support. Or you’re going to go through phases where you need more verbal support, more visual support. Sometimes you need more task organization. Then you’re going to need more day-to-day support, like help on and off the toilet. And then you will need help to continue to eat and maybe to chew, and you have to have a different diet. It gets super complicated.

It’s very unusual these days for somebody to be able to stay at home with only one supporter, and I would say for all my friends — and I have lots of friends who live with dementia — they find at some point, living alone is really no longer a reasonable option, and they’ve got to decide, “How am I going to deal with that reality?”

The two options: either bring support in, or you go find support somewhere else by being somewhere else.

“I have to come up with a care plan for now, and now I have to think about the future [as well]. So it’s no wonder it’s overwhelming, because I’m actually asking people to come up with, ‘What’s good for Teepa now, but then as we move forward, what’s going to be good for Teepa as she progresses?'”

Being Patient: Lynn has asked, “My mom’s neurologist put her on Aricept four years ago. She’s been in a nursing home for three years now, [but] says she went in yesterday and is going home tomorrow. I just agree with her. She still knows me. I’m wondering if she really needs Aricept?”

Snow: The tricky part of Aricept is it doesn’t actually change dementia at all. It’s not what it’s designed to do. The chemical properties of it — it creates a fake acetylcholine. It can’t actually operate in the brain. The best it can do is trick some of the enzymes and latch on with the enzyme so the enzyme doesn’t consume or tie up the real acetylcholine that your brain is producing.

Acetylcholine is a chemical that’s pretty active in forming new pathways or new memory patterns, and it has some other roles in finding the logical word pattern that you’re looking for.

The honest answer is, there are some individuals taking Aricept — those kinds of meds, acetylcholinesterase inhibitors are what they’re called — variations. It’s not doing anything for them. It’s not hurting them, but it’s also not helping them, because it’s just not doing anything in the areas where the damage is, and it’s not helping in the areas where they still have function.

For about a third of people, maybe taking it is causing some issues for them in other parts of their systems, because acetylcholinesterase is not only happening in the brain. Happens in the gut. It happens in the intestine. It happens down in the bowel area. It can happen in the cardiac area, so people with high cardiac issues can’t take it. 

So it could be causing the person some issues elsewhere, or it could be doing nothing, or it could be helping.

Some physicians are like, “You’ve been on it a while. If you want to try going off it, go for it.” Other physicians say “No, no, no. Stay on it. You don’t know; it’s worth staying on.” Other physicians will say, “When somebody goes into a nursing home, it’s time for a trial to see whether or not it’s causing or helping or anything. Let’s try doing a taper and see if you see anything, and if nothing changes, then we can take it away, or you can keep it if you want, but you feel like a decider of something.” But in fact, it was never designed to keep your dementia from getting worse. That’s not what it is. It just helps with symptoms sometimes.

“The tricky part of Aricept is it doesn’t actually change dementia at all. It’s not what it’s designed to do.”

Being Patient: Lorraine has asked, “What do you do if your loved one with Alzheimer’s asks where her husband is, even though he’s right there, and thinks he’s her father? Changing the subject, distracting her doesn’t work, as she’s very worried. This consumes her.”

Snow: So with the husband being right there, but they think it’s their dad, it’s because their brain is in a space and in a place. In brain change, we call it the Emerald stage, where you’re a little less clear and sharp and you’re starting to do time travel or place travel.

In this case, there’s some time travel going on. So I see an older man and think, “Huh, I love him, and I know him, and I like him, like he’s my dad. So, where’s my husband?” Because evidently, I’m in a place where I have a younger husband, and this is not it. “This is the older guy. So, where’s my husband?” You’re wanting to talk to your husband.

Part of it is, there’s this old man here that she views as her father, but she’s missing the husband part — she can’t find him — which is her dementia has progressed enough that she sees him as a younger man, not this old guy.

Being Patient: Do we know why that is? Why do you go back to your childhood?

Snow: Those pathways we have built and used for years and years. We often will hear about episodic memories. They’re memories from my younger time, which are solidly cemented for me. I’ve used those pathways over and over, told those stories. Those are solid. The more recent stuff is less solid, and as it starts to fray and be damaged by dementia, the thing that’s solid is the old stuff, not the new stuff, and so my brain still can access and use it.

That’s not necessarily true with vascular dementia, which could be strokes or blowouts of brain tissue. And it’s not necessarily true about Lewy body. With Lewy body — you’ll create memories that are a little different, like you confabulate things, and your brain makes up what we would call wild stories, like improv. There’s no way that happened, but my brain believes it happened, so it creates artificial pathways, fake ones for me to go follow.

For most people who go through Alzheimer’s, [they] have trouble with new things, but the old stuff is solid. So [they will say things like] “I got to get to work. I can’t stay here.” They were looking for me at the office because I felt valued and purposeful there. They knew what they were supposed to do, and [their] brain is basically saying, if I get to the place of familiarity, I’ll know what to do. The honest answer is, no, they won’t, but they just need to be someplace other than a place that makes them feel stupid.

Being Patient: How do you know when someone is entering the end stages of Alzheimer’s? Are there signs? We find ourselves trying to figure out what the best situation is without knowing what part of the timeline we’re in? 

Snow: Are they still eating on their own? Are they still drinking on their own? Are they going to the bathroom? When you have them go to the bathroom, sometimes they are incontinent, but if you have them go to the bathroom, can they release their urine when they sit. Can they release their bowels as well? [If they can] then you’re not near the end, because the problem is, all systems have to start to fail, because the brain is in charge of everything. They’ll become immobile because your brain moves your body. 

What’s happening is their world is getting incredibly small, and it’s hard for them to notice you sometimes, and it’s hard for them to let you in.

Being Patient: Coral has asked, “My husband stays up most of the night while I’m sleeping. He sometimes falls, and he’s on blood thinners. He has vascular dementia. We’re having him use a pager and a walker. Is there a medication that will help and won’t increase fall risk?”

Snow: The challenge we have is any meds that are designed to help get somebody to sleep rarely keep them asleep, unless we suppress their balance system. Unfortunately, the same meds that help you not be alert, not be aware, and get into a deeper sleep state also affect balance. 

You sleep in waves of motion. You don’t sleep in a solid state the whole night. You come in and out of a sleep pattern of different waves. If I suppress you, then when you go to get up, maybe to go to the bathroom, or you just want to roll over, unfortunately, your coordination is impaired and your understanding of gravity is impaired, and you’re slowed, so you’re more likely to have a fall and not still stay asleep. You can work with a physician to try some things. All of them have risks. 

I’m a little worried, given your description, that the person may also have maybe a secondary dementia that’s not been noticed and is well known for not being noticed — Lewy body dementia, which makes people hyperalert and hard to sleep in about half of cases. For everybody who gets Lewy body, they have a hard time at nighttime if they’re up, and they have restless legs.

Being Patient:  Deb is asking, “How do you help people with dementia when they don’t make sense talking?”

Snow: I’m listening for sound, for rhythm. I’m looking for intensity. What I’m doing is substituting doing [actions] for talking, right? Because I want to know, can they get it if I show her this —

Being Patient:  Because also, you’re again empowering the person to feel like they have value and capability, right? That’s very much the key to contentment. I think often what we do is we make mistakes feeling like the person doesn’t have the capability to feel value anymore when they do —

Snow: Or if I say, “Mom, I don’t understand what you’re saying. Say it again. Say it again.” If I can’t get it the first three times, pause. It’s time for a quick pause and go, “Okay. Language isn’t working for us.” 

Being Patient: How about music? 

Snow: For sure. You [play] a song, and then sometimes people can talk for a few seconds afterward. Sometimes I’ve had people actually say, “You know, I think I sang that when I was in college.” It’s like, wow. It comes out of the blue. But what happened is, they just integrated the circuit, and the circuit locked in, and that plug was right in there, and it was off cylinders, and then somebody pulled the plug. That’s the hard part for us — it comes and it goes. It’s hard for them too.