This article is a transcribed edited summary of a video Bob and Brad recorded in October of 2021. For the original video go to https://www.youtube.com/watch?v=ucQliFuYBtA
Brad: Hello folks. I'm Brad Heineck physical therapist.
Chris: Hey, I'm Chris, the pharmacist.
Brad: Today we are extremely happy to have Chris compliment and upgrade our show with some up-to-date information and just a wealth of knowledge. He really researched this topic and we're going to have some information you'll want to know. This disease we're talking about is...
Chris: Alzheimer's
Brad: Alzheimer's disease, the seven stages of Alzheimer's, and what we want to look out for. Now, actually, before we get into it, I do want to say that personally, have a real curiosity, and in-depth interest in this topic. For number one, over the last 23 years, I've worked with people with Alzheimer's as well as I'm, sorry to say, I think my mother has symptoms consistent with what we're going to talk about. So it's a personal topic, more personal than when it's a patient. And for people out there, if you have a family member involved with this, it's personal to you as well. So pay attention. Hopefully, you'll learn some things about this. We're going to have another video coming up. That's going to have some treatment things you can do at home with your loved one or a friend who has already been diagnosed, or if you think maybe there's a possibility of it. With no further ado, we want to have a talk and let Chris take over and explain to us what information he's discovered.
Chris: Yeah, well, there's a lot of things that come up, dementia is the umbrella word, and then everything else kind of comes underneath it. Of all those dementias, Alzheimer's is worldwide the most prevalent. I mean, you're talking 50 million people worldwide, in the United States about 5 million people. So it's 60% or 70% of the cases of dementia are Alzheimer's in nature. So what Dr. Barry Reisberg has set up is what they call the Global Deterioration Scale. And that's not my words. It's very Debbie Downer, but I do think that what this is going to do is just a series of seven stages that are going to give us examples of what you can be prepared with. And your loved one can be prepared, as you go through this journey together. And it really is a journey. It’s something that, hopefully, we're going to just provide some help and some ideas. And at the end, we're going to post some websites and areas for support so that we can get you the most possible, best effective care mechanisms that we can give because this is an interesting journey, to say the least, but we want to make sure that you're, as in the know, as possible and as comfortable as possible.
Brad: Well, I do want to say, like, in my case, I've gone through these seven, I'm looking at these like, my mother is consistent with the first two or three. They don't always go on strict order.
Chris: They don't go on a strict order and that's the one thing I was going to touch on, but that's true.
Brad: My mother is scheduled to have an evaluation to see if the diagnosis is there or not. And it's weird because last July, they set up the orders and it's two and a half months later, or whatever now, and she still hasn't got the assessment because they're so backed up. They have to go through her chart and make sure that she gets set up with the right evaluation et cetera. I don't understand it all, but it is a lengthy process. And so that may be something you come in contact with.
Chris: And that's what makes this so tricky, Brad, because the average diagnosis length of time to actually get the word Alzheimer's stamped on your record, takes six years for a patient. So it's not quick. They have to rule out multiple other things, whether it's medications, other disease states, or whether it was kind of a vascular issue. And, not to totally digress, but you know, Alzheimer's is certainly one thing under that umbrella of dementia. When they look at the brains of 80-year-old people that they've done autopsies on, it's mixed, in most cases. So you might see a vascular component, you might see the Alzheimer’s component, or you could see a Lewy-body component. So these are all different forms of dementia. It's not just a one-size-fits-all, cookie-cutter thing. And again, as you said, you can kind of go through these ranges in these seven steps and they can be kind of mixed. The world health organization uses just three. So they just say it's early, moderate, and severe.
Brad: Okay
Chris: So that's the simplest way to, and a lot of neurologists subscribed to that too, because at some point you're splitting hairs. I think the only thing with, the seven, the seven units that Dr. Rosenberg has pointed out is it just kind of walks you through each stage a little bit more with some specificity to maybe just allow you to have a little bit of knowledge. So you know that, okay, I see this is what I can do to support.
Brad: So. Let's go to stage one.
Chris: Yeah. So stage one, you know, it's interesting. It's just what they call normal outward behavior. So let's say I've got the condition myself. You're looking at me and I'm talking right now and you're not going to notice a darn thing, nor is the patient in that case. So it's just normal outward behavior. So it's very, very difficult. It's a silent onset. The damage that occurs, occurs many, many years further. So about the only thing we can draw parallels to is like with Parkinson's and we're not going to go down that path, but it's, just something that we know that somehow the brain just develops and goes along, whether it's nutrients, environmental toxins, or whatever, happens much earlier than probably what we think.
Brad: So we're talking. Maybe people are in their fifties or sixties when they don't know.
Chris: Well, they don't really know. And that's part of the problem. The research is tenuous. It's challenging. It's not easy. If everybody was, you know, if it was easy, everybody would be doing it but it's just a difficult, difficult subject. So when we move from there, you know, if you were going to get any type of diagnosis that early, it would be by accident. So they would have done a specific test. Maybe you had a fall, you hit your head, and they did a PET scan. Then all of a sudden they see, with these special tracers, they put radioactive tracers in there, go to the areas of the brain, and all of a sudden, "oh my gosh, we see all this", you know, beta-amyloid proteins, and Tal proteins and tangles and all those crazy things.
Brad: So that would indicate, Alzheimer's?
Chris: Yeah, and even having those in the brain scan doesn’t necessarily indicate that you're going to have Alzheimer's. So it's really early, but maybe.
Brad: So what about stage two?
Chris: Stage two. So then it's going to be just mild changes. And this is where it's tricky, because unfortunately, we have age-related changes. You know what I mean? The biggest thing with Alzheimer's specifically is age. So as we get over, you know, it's a 65 plus kind of disease state, and the longer we live, you know, it's a chance. And again, it's not everybody. I mean, the statistics are going to be one in six women, and one in ten men.
Brad: Is that worldwide or the United States?
Chris: No, that's worldwide.
Brad: Okay
Chris: So I went with a worldwide. The math seems to correlate with the United States as well. So what we could see is, that I can't find my wallet. “Where did I put my glasses? Where are my keys?” And I mean, we're all busy. I have two young kids, man, in my thirties, I was forgetting where I put my keys. So, it's difficult to say, "oh my God, I've got Alzheimer's", you may be progressing towards that, but it's still very, very tricky to see. So, you know, if you're finding that, "oh my gosh, I keep losing stuff all the time, I don't know what's going on", please reach out to your physician. And that's where we want to probably start taking some steps. If you feel like it's a problem, oftentimes people aren't going to notice it till you get to the third stage, which is what they call mild decline. So, that's where people around you are going to start to see, "oh gosh, Chris, keeps putting his keys in the refrigerator", and, you know, just kind of that outlandish stuff. Let's say my wife notices that I didn't balance the checkbook appropriately.
Brad: Things that you normally could do.
Chris: Things I normally would be very astute with and all of a sudden just start to slide. And it's easy as the patient, to say, "oh wow, I was just really busy or I was watching the football game, I was watching the Packer game, and I was just distracted.”
Brad: I have to say, it's funny because I mean, this part of this is funny, but I put my socks in the refrigerator.
Chris: Atta boy.
Brad: This is a year ago, but I'm not too concerned about it.
Chris: You had cold feet.
Brad: Yeah, you're right. People are going to get upset with it because we're joking about this, but anyways. I put them in there and I looked all over the house for like 20 minutes. I finally found them in the refrigerator when I went for the milk. But again, I know my mind was very busy with other things I was thinking about the rest of the day So those things make it difficult.
Chris: It does. It makes it challenging. And so as a patient, this stage is also tricky because there's self-awareness, I mean, you know what's going on. And at this point, you'll have been encouraged to probably see a doctor or you're already doctoring for this. And depending upon the situation, this could be many years that's been progressing towards this, right. Or digressing, I guess, as the case may be. And so really it's just going to be, so how do you help somebody at this stage? Well, if it's a character, a loved one now maybe help them pay the bills, set up auto-pay. I mean, this is an area where maybe you get your financial affairs in order your estate planning, wills, those types of things. You want to lock things up because this is the stage where, unfortunately, there are unscrupulous people out there you could be taken advantage of. And so right now it's kind of a protection mode. And I mean, you could, you know, and, and also more important than that, right now we want those healthy habits. We want a good diet. We want to remain active. We want to be doing, you know, playing the brain games. I mean, doing the things, and we'll talk about this, in another upcoming video, but what we can do. But you know, this is the area where we really want to start to focus on those things to try and reinforce and prolong.
Brad: So yeah, the, like I said, we have the next video on more details on treatment. I know in therapy, we'll have people that are in say a skilled nursing facility getting ready to go home and we'll work with them, OT will, how to balance their checkbook, review it. And a lot of times they don't have Alzheimer's, but it’s because of whatever they went through their surgery, and the medications. They get through it and then they're fine. So again, it's where there's a fine line. Is it Alzheimer's or is it a side effect of a medication?
Chris: It could be a medication. It could be a health condition. Maybe we had a small stroke, a TIA head trauma. I mean, there can be a litany of things. So I guess that's the one thing that as you go through this journey with family and loved ones, or even yourself, it's just things to be aware of. But, what else can we do? We want to try and declutter things. So, you know, whiteboards, checklists, having a med box if you take a couple of different medications or, anything that we can do that’s linear. You want to declutter the place.
Brad: You're talking about, say they live in a house or apartment, open it up so it’s very clear.
Chris: Yeah. So we're going to keep counters clear. We're going to keep everything in the same place. If you're going to go on an appointment, always try to make it the same day of the week, the same time. When you see your dentist every six months, let's say you see a chiropractor, you see your physical therapist, you know, it should always be Wednesday at noon or you know, consistent.
Brad: And then there's the next stage for that. What happens then?
Chris: Stage four is just an extension of stage three. It's just that the outward changes that you observe in your loved one become much more obvious. So it’s details about themselves, for example, “I don't remember my birthday. I think it's September.” And you're like, “oh yeah. It's December 1st.” “Oh no. Chris, it's September 1st.” “Oh yeah, yeah, yeah. It's September 1st.” Okay. And so that, that's kind of where you're going to start to see this and things that everybody knows around you. It's a difficult point for the patient at this point, too, because again, they have that self-awareness so they know. And so they can make an excuse. They can laugh it off or they can get very angry. So you can start to see some behavioral changes. You can start to see some of this, which is much more of the next stage. This is the stage we want to try and make sure we're protecting them. Probably no driving when we get to this point. Your physician will have stepped in at this point because you're going to see these outward signs that just show that it's difficult, reasoning becomes difficult. You're going to find those details about yourself, like trouble cooking. You guys go out to dinner. You go to our favorite restaurant and they normally get their usual meal and all of a sudden it's a challenge for them to get something. “I just don't know what I want. This is also overwhelming.” They get stressed and frustrated. And instead of having a nice night out at the restaurant, all of a sudden it becomes a stressful event. And then when that stress creeps in, it actually makes that thinking much more challenging. So we want to just say, “Hey dad, you always get the steak. Should we try the steak?” “Yeah. Yeah, that sounds great.” And so if he can flip the table, that’s something that usually helps. So I guess at this point we're starting to protect. And so that's kind of the key and that leads us really into number five, which is what they call moderate, severe decline. And this is the point where you're losing space and time, you can get lost if you were taking a walk by yourself. The seasons can be confusing when you get dressed. I mean, let's say it's summer and all of a sudden you're grabbing a coat when you normally wouldn't grab a coat on an 85 degrees, sunny day. Then again, sentences don't seem to be quite right or stories are a little bit different. But here's the interesting thing, you know, it's like what can we do to help them remain more independent? Let's layout their clothes for the day, keep reinforcing the whiteboard, and keep using the checklist. So independence is key, but you know, if mom or dad are telling you a story, let them go, listen to it and, encourage them. You know, well, and what happened next? And so what if it's wrong? Right? Enjoy it and be in the moment. This is the stage where they start to ask the same question over and over again, which as a caregiver can be very, very frustrating. But that question isn't so much about the answer you're going to deliver as it is just knowing you're there, it's a very lonely stage.
Some of the things that we want to declutter at this point are mirrors because we're going to start to get some of those physical issues where maybe our gate isn't quite as strong. We're losing some of that muscle strength, swallowing and eating is a little bit more challenging, which really leads us into number six, which is what we call the severe decline. You know the face, but you don't know the name. So I can recognize you as one of my best friends, but I can't recall Brad. And it's hard, and at this point, it's much more difficult on the caregiver. The caregivers are going to be usually younger because they're typically children of the parent. And so, you add an eight-hour, 10-hour workday, and then another five hours with mom, dad, uncle, aunt, neighbor, whoever, you know, mowing the lawn, doing the dishes, helping. So I mean, it becomes difficult. That's why we'll have those websites posted again so that you guys can kind of find areas for resource support. And just even sometimes commiserating is just a good thing.
Brad: I remember very clearly when my grandmother was in this stage and I was in high school, 17, 18 years old, and went to visit her. She had no idea who I was. I called her grandma. She said, are you one of those young kids that call old people, grandma all the time? I had no idea what it was. I didn't want to go visit her because it was scary.
Chris: Yeah. It is scary. And that's why I'm hoping that these stages help people to just understand. I guess at this point; the patient really doesn't know what's happening from minute to minute. You're starting to see, in stage six, it's going to be some of those delusions. “I'm getting ready for work.” Well, you've been retired for seven years. You might call your wife, your mom. You're starting to see difficulty eating. You want to go to the softer foods, swallowing, choking, aspiration pneumonia. I mean, these are the points where these health issues start creeping up.
Brad: At this point, it's typically time to move the person to a skilled facility.
Chris: Yes, because it's just overwhelming.
Brad: It is. You can oftentimes I've seen a number of people through professionally that would get combative. And I would say it's probably at this stage and that's very difficult. As a professional, it's easier to deal with that than if you're a family member, more than likely. So you really need to get the proper help at this point.
Chris: Yeah. It really is. Things that you can do to still remain close with your loved ones, music is a wonderful thing and it stimulates the brain. Looking at old photos is a wonderful thing to spend time with. And they may not be able to communicate that this was little Billy when we were at the fair, but there'll be some glimmer of recognition at some point. And they still enjoy just seeing different things. Reading to them, these are things that you can still spend quality time, even though it may not feel that way. But it's a moment. In that moment, I think there's a connection there that may be a little bit more spiritual than scientific, but I do think that it's a very important step for everyone, right?
Brad: It's something you just need to work with. I like what you said about if they're telling you the history of the family and you know it's all wrong, you know. I've experienced this now with my mom, she's talking about things that happened a few years ago and it's like, mom, this is not even close to being accurate. I do not interrupt her. I let her go on, and then I'll go onto something else. And maybe I'll remind her and, get things to click and whether it's right or wrong, I'm not going to Badger her and say, mom, you got that all wrong. It's okay.
Chris: Yeah. I mean, there's no right or wrong at this point. I mean, the key at this point is just to focus on the quality, just being there. I think that's the key because as we go into the last stage, number seven is what they call very severe decline and the basics are gone. You know, can't sit up, can't move.
Brad: This is almost 24/7 care.
Chris: It is 24 7 care. I think, realistically you want them in skilled care. You can't do it by yourself.
Brad: And this is hard to talk about if you're not familiar with it. For me, I've been working with it for 23 years, it’s to the point where they don't know enough, or can't remember to push the button, which is going to bring an aid in or a nurse in to get some help. That part is oftentimes, I just don't know. You have to be careful about, are they going to roll out of bed and fall? And there are all kinds of physical precautions that you can work with. It's a tough stage, but the reality is it's there. And you know, it's probably pretty close to the end.
Chris: It is. And I mean, the key is comfort and what can you do to love and support.
Brad: This is a spiraling disease, it's a downward spiral. And there is no cure at this point. That’s probably going to be years down the road. But if you're in an early stage, like I feel my mother is probably at three, somewhere in there plus, or minus, but there's a number of things you can do at the early stages. I would never tell anybody you have Alzheimer's, if you're not a professional. All these things that we're going to talk about in the next video that you can do to help are good for anybody. Yes. You know, playing word games, scrambles.
Chris: Scrabble, crosswords, playing checkers, playing chess, cards. I mean, just anything socially engaging is good.
Brad: Taking a walk, walking.
Chris: Just go to the park and take a nice walk. I mean, getting outside and doing.
Brad: Check out the shirt I got here.
Chris: Life is tough. Let's help each other. Couldn't be more appropriate.
Brad: I'm going to help each other out with that. So very good. Enjoy the day and be careful.
Chris: Thanks, everybody.
Additional Resources
Alzheimer's Association: https://www.alz.org/https://www.lbda.org/
Family Caregiver Alliance: https://www.caregiver.org/
Dementia Mentors: https://www.dementiamentors.org/
Memory People Facebook Page: https://www.facebook.com/Memory-People-126017237474382/
Alzheimer's & Dementia Alliance of Wisconsin: https://www.alzwisc.org/
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