Okay, let's talk about staging dementia. Which my disclaimer is, it's tough to do my first job working in a dementia care community. One of my goals was to or for you know, for work was to stage people stage my residence, which was really hard to do, and I'll explain why. So, people often ask me, Well, what stage is my loved one and I really have to spend some time with them to figure that out. I once I had a woman corner me at a speaking gig, and she was like, Okay, my husband does X, Y, and Z. He has XY and Z diagnosis, how long does he have to live?

And I was like, Look, I I do not know. And she said, Well, how long this one would leave me alone. I finally managed to get out of there, but I was like, Look, I'm not trying to give you you know, he could die today. He could die in like seven years. I have no clue. Right?

So if somebody comes to you and they say your loved one has x amount of time left, that is a guess that is not real. Okay? So a lot of stages are one through seven. And I'll show you a picture of a scale like this called the Global deterioration scale or the GDS. So the one through seven scale is fine. There's also a fast scale, which is a functional assessment scale.

There's a one through five scale. And then I like to talk about people being in a mild, moderate or advanced stage of dementia, or like an early stage, a moderate stage, the late stage. It's really hard to stage people, which is why I like to talk about people being an early or a moderate, you know, like stage of dementia, because saying someone is five. Well, what does that mean? Because here we have a one through seven, I have a one through five over here. What are those scales look like?

And I'll show you in a minute. One of the scales, and it's so different depending on the person. If you meet one person with dementia, you meet one person with dementia. I've met and heard stories about probably 1000 different people living with dementia, right? I cannot tell you that any two of them are exactly the same because they're not. We're all individuals, we all have different experiences.

And we all come from different backgrounds and yada yada, yada. The point being, putting someone on number scale is really hard to do. Although, if you speak to a physician usually will end up with a number. What I'm saying is don't get too obsessed and attached to that number. Why? Because there are a lot of changes in dementia care.

What will often happen is that someone will be going along, going along going along, and they're kind of doing fine. And then something happens. We call this like a precipitating event. And a precipitating event could be a fall, a stroke. Maybe some mismanaged medication, who a urinary tract infection is oftentimes a big precipitating event. And then what will happen is there'll be a deep, like a steep decline, maybe they'll have to go to the hospital or something like that.

And then sometimes what will happen is we'll get a little bit better after the hospital stay or after they recover from the urinary tract infection, they'll get a little bit better, but then there's like this, there's this new baseline. And so what happens is there's a pretty big discrepancy between the old and the new baseline. And you'll have families who will be like, Okay, well, you know, dad used to be here, and all of a sudden, you know, now he's down here, and I'll say, Well, what happened here, like what was the precipitating event and usually it is a fall or urinary tract infection, etc, etc. And then this kind of thing will continue to happen, where someone will be going along, going along with the new baseline, and then something else will happen and there'll be a decline. And it doesn't always have to be something you identify.

You know, you may not be Able to necessarily identify the precipitating event. But usually decline works like that. And sometimes there is just kind of a steady, slow decline. Usually, however, there is some sort of event that occurs causing somebody to reach a new baseline. Here's what I was talking about earlier, the GDS, the global deterioration, deterioration scale, that's a kind of a hard word. I've attached in the resources, a PDF version of this you can download and this is just a quick look at it.

So we can chat. Right? So first of all, I've got just like a problem with this level one is no cognitive decline, then why is it on the scale? I took, I don't know. Whatever to is very mild cognitive decline, and they can show you you know, you see subjective complaints of memory deficit forgetting names, one formally new well, blah, blah, blah, mild cognitive impairment and then it lists all these things. The problem is within This list, you can see they list things like there's an option, right?

There's a lot of variability here. So saying, you know, a person is going to move through the stages in this linear pattern is just not real. You know, nobody really moves through it like this. I mean, I've met people with very advanced stages of dementia, who, you know, can walk around and have a conversation with out too much obvious decline and you're thinking, well, what's happening there? Well, all the rest of their activities are a bit of a mess. And you know, they can't feed themselves when they are talking.

It doesn't really make any sense. But they're talking right and they're moving. So it's tough it you know, people jump around and people's dementias look different. What does decline in general look like? speech to client, you may notice a decline in speaking all together, you may notice that they have less words or varied phrases. So I've met people who say Help, Help help, you know, and that means everything you know, that means anything and everything at the same time.

Or people who will say yes to everything, and sometimes they don't mean yes. aphasia is a speech disorder. And people who have aphasia typically do not speak at all, or will occasionally come out with a sentence or two. I've seen people with aphasia in incredibly early stages of dementia or even mild cognitive impairment. And then I've again had people who late into their disease process can still speak. So we want to make sure that when we're working with someone with aphasia, we do not talk about them as if they're not in the room.

They still understand what you're saying a lot of the time. They just can't always speak, right? So we want to make sure we're not like talking about them like they're not there, they're not stupid. They just can't speak. You'll also sometimes see interesting things with second languages. So if someone came here, you know, to this country or wherever you are speaking a different language, they may lose their ability to speak the language they learned.

Second, it's not they don't understand the language they learn Second, there, it's just not coming out of their mouth. Personality you may see volatile mood changes or what's called flat FX, which is essentially when someone has no like emotional response to what's happening. And again, you know, oops, you might not see really any personality changes. So these are just potential things you might see you you might not see all of these things right. Movement, they may have trouble walking or movement, moving, sometimes movement for no reason or without a purpose. So they have like a tremor or they're constantly paying saying, you know, doesn't really seem like to you that they're going anywhere, but they are just moving.

Or they have like a foot, they're constantly moving around, shaking. Eating, there may be a decline in desire to eat or a focus on eating all the time, you know, focus on sweets, especially, I mentioned this in the next section, but I'm very much in the camp of let them eat cake. Right. So if you have someone who really only wants to eat sweets, I don't think that's that big of a deal. I think they can eat sweets. toileting.

This is very, very common to have a trouble trouble with self regulation of toileting, so incontinence of bowel incontinence of bladder, just trouble understanding when they need to use the bathroom, and then oftentimes waiting too long, or not even getting the signal from their body that they need to go. And so oftentimes people will end up wearing adult briefs. I want to be clear, we want to make sure we're not calling them diapers right now. His or her babies call them adult briefs. Bathing maybe no desire to bathe or or even a fear of water. And a lot has a fear of water comes because they can't see the water.

I've talked to somebody just the other day and recommended to them that they fill a bowl with water so it's not coming out of the faucet, and then maybe even putting a little bit of food dye in it so that the person could see the water. That might make them a little bit less fearful when brushing teeth. And then the internal clock usually gets pretty messed up so the sleep and wake hours are disrupted. Maybe someone's napping a lot during the day. Maybe they're not sleeping well at night, that kind of thing. Death and Dying.

So this is not anyone's favorite topic of course, but I think it is necessary to talk about I would be quite remiss to teach this whole class and then not talk about death. So we are going to talk about it. Dementia is the sixth leading cause of death in the United States. That's a pretty big number. And this is dementia as a whole. Right?

So there's all different causes of dementia, as you know, how will I know when they are dying. So there's something called active dying, which is the final phase of death that lasts usually around like three, four or five days. And then there's something called pre active die. But inactive dying, there is usually a decreased response to external stimuli. So you know, you're talking to them, they don't seem to be responding too much. Although I want to mention that the last sense to go is hearing so people who are dying can still usually hear you so that's important to remember.

They may have glassy eyes changes in breathing, low blood pressure, mottled extremities, which is like a skin change. So you'll see that they almost turn like a little bluish purple ish. Potential surge of energy even if you don't see that too often. Pre active dying again, weeks beforehand. You may notice changes in sleep, increased sleep, loss of interest in foods and fluids, restlessness. Sometimes it's hard for people to recognize when a loved one is dying because especially with dementia, they've been declining over time.

And so recognizing when there's actually this change, moving into the dying phase can be a little bit difficult. I always recommend calling in hospice and palliative care. So hospice and palliative care are two different things. Not every company offers palliative care. Palliative care is for like when someone has you know, wound that won't heal, it's it's pain management, its skin management, its care management. It's not because someone is necessarily dying.

Hospice is typically used when someone is moving into the final stages of their life, usually six months or less. Hospice companies have different ways of getting somebody on hospice. Sorry, I'm gonna plug in my computer real quick. Hospice companies usually have different ways of getting someone onto hospice. It may be different for different companies, you know who they take as clients. But I really recommend calling in hospice, before you think your person needs it, because a lot of times they can qualify for hospice before you think they can.

So we don't want to just go Oh, hospice, that's scary, right? Because hospice can be a wonderful thing. Hospice can provide a lot of great, great things for you and your family, as well. So I really recommend looking into hospice, even if you're like, oh, hospice, bad word, right. It's not a bad word. It's a really nice thing and it's free.

It is free of charge to you and your family. And I mean, like, yeah, nothing better than free. Right? What causes death? So I get this question a lot, right? If dimensions this Dementia is the sixth leading cause of death in the United States.

What causes death and dementia? precipitating events like we talked about, right like a fall or choking is usually kind of the straw that broke the camel's back situation. So sometimes someone will choke and then they end up getting pneumonia, aspiration pneumonia, and then the pneumonia is the straw that broke the camel's back. That's, that's the thing that ends up killing them. But they wouldn't have choke if they didn't have dementia in the first place. Right.

And then there could also be just like a slow shutting down of the body because dementia is a brain disease. Right? So dementia, and you know, your brain controls everything in your body. And if your brain controls everything in your body, and your brain isn't working well, well, the rest of you isn't going to work well either. Right. This is a great book to read.

I am slightly biased only because Dr. Kenny is part of the Johns Hopkins you University Press collection of books. It's a 36 hour day book, which my book also is. I really this book was very valuable. I read it, making tough decisions about end of life care in dementia by Dr. Kenny and I have a link for you in the resources, really all about, you know, those later stages, even when it comes to legality and different legal decisions that you need to make really a worthwhile book to read. I think