Video Transcript: Understanding Dementia

We’ve talked about some personalized plans in different ways and today, we're going to learn a little bit about what we mean when we say dementia and what that looks like in congregation members and in people that you will encounter who are experiencing this and what that can do.   So let's go ahead and have a little introduction to dementia today.   And so today's time, we'll just focus on some of the details about what that looks like and then the rest of the week, we'll explore some strategies together.   

So first of all, we want to talk about dementia.   Now, dementia is a sort of umbrella term for Alzheimer's and some other things.   Now Alzheimer's relates specifically to memory loss, but it is an umbrella term covered underneath dementia.   And there are various kinds of dementia that you will hear about.   But I do want to mention that some people have gotten into arguments.   Mom has Alzheimer's.   No, she has dementia.   Well, both are true because Dementia is a phrase that covers many different diagnoses that have to do with the brain functionality in aging.   And Alzheimer's is one of them.   

So what are we talking about when we say dementia?   Well, let's look at some images because it really is changes in the brain.   And that happens structurally as well as chemically.   So if we actually see the size of the brain and the amount of mass that there is to it, and the functionality that's happening, and we think of it like a muscle, it is actually shrinking in size.    There are more spaces in between things, as you can see, a sort of normal brain has lots of gray matter to it, lots of the muscle mass to it, and one that's been affected by dementia is actually shrinking, and you'll see spaces get bigger.   And so the places where you get to keep things like memory and language are actually shrinking in their capacity to function.

But it's also a chemical change.   And now you've heard some talk about some of the neurotransmitters and things like that as Barb has talked.   But what's happening in dementia is that the actual chemical transmitters that are transmitting information and things like mood, and tiredness, or ability to pay attention, those are all contained within the little chemical exchange is happening in the brain, in what are called neurons and the synapses are picking up these neurotransmitters.   But what's happening with dementia is that the chemicals are getting sort of mixed up and spread around and some aren't produced quite as much, or some are producing more, some are catching more than they used to.   And so you'll get mood changes and changes in ability to pay attention and things like that, that we're going to talk about, because there are actually chemical changes happening within the brain, as well as the structural changes happening in the brain.   And so it's not that hard to see that things are definitely being affected like memory.   

So we might be driving in the car and the person who's experiencing dementia is getting excited about going to the store and has their wallet out.   And now they looked out the window and started thinking about something and grabbed something else in the car to take a drink.   And all of a sudden now there is this major amount of eggs that they can't find their wallet, and they're really stressed out about this.   And calling - Oh, we have to turn around and go back because I must have left my wallet at home.   What are we going to do, and doing a little digging and helping to remember that it is right there on your lap.   

So you'll see things like this happening where memory is just starting to fade and it can pop up at different times, but definitely memory for things like names, words, which we're going to talk some more about.   But remembering things, it's not a good idea to talk about what would you have for breakfast today because there's not probably going to be a great likelihood of that memory still being there.   

Now you want to talk about memory from back in childhood that's in a different place.   So those memories may still be there.   There may be fuzziness about what actually happened in those memories but talking more about the short term memory is going to be much more difficult because of those changes that are happening within the brain.   

Vision tends to change.   And I don't mean that blindness sets in in the physical sense.   It's not a change in the actual functionality of the eyes, which can also happen in aging.   It's more of a skewing of the processing and the perception of vision.   So what tends to happen is that we get to focus on tunnel vision or straight ahead vision as opposed to the peripheral vision which will be much more difficult to process, and so those things that are in the periphery may be fading or could be the other way around; sometimes the peripheral is stronger, but usually it's face on vision.   There's sort of this goal zone of vision that you'll want to focus on in terms of vision because things that are not right in front may be completely missed without that.

Social responses will change.   You'll notice that responses that you would expect, like, oh, it's nice to see you today might not be there, or they might come out somewhat oddly.   Remembering to shake hands or how to do that could be different.   Just some social responses will be different.   Or you might notice a more reliance on those little phrases like well, so nice out today, isn't it?   Or some of those little chatty phrases that tend to help us get through a social interaction and seeing those change.    

Now a couple of the other things that are going to come into play with social responses like our words.   Now, what happens in our brains is we sort of have these filing cabinets that keep our words for us, and we know where they are in a category, we sort of have to go to that filing cabinet, think of that category and then come up with the word.   And so what can happen is people start to lose the definite word that they're looking for, and sort of talk around it.   We call it circumlocution or circumduction.   Having to vaguely refer to these things, because we can't come up with the exact word that we're looking for.   

For example, someone wants to explain that there was a flat tire out in the parking lot but all they could think of is it was the circular piece of the vehicular, out the box.    We to come to find they're looking out the window at a car with a flat tire, which is no longer circular.   And so helping to think through these, phrases that are trying to get at the meaning can be a little bit tricky.   But again, what you're noticing is that the words are disappearing.

You will also see changes in impulsivity.   You might see some behaviors that you haven't seen in an adult for a very long time.   You might see things like suddenly jumping up going, I don't like this.    Or announcing, aren't we going to do this now?    Or eating more cookies than they really should, because now there's just a lack of impulse control, and they just really taste good.   So they're just going to eat as many as they can get at the moment, not remembering when they might have last eaten, or things like that.   So impulsivity can increase.   And again, this is part of a chemical change in the brain, because those things that control impulses might not be operating like they used to.

You will also notice a loss of inhibition, and so things like zipping up pants or greeting people in not very much clothing, or things like that tend to lose their importance.    The inhibition or the social constructs that formulate some of the etiquette that we are typically used to as interacting with adults might no longer be there simply because of the just the loss of inhibition.   And that may not have anything to do with memory of things.   It's just simply it doesn't matter to them anymore.   What they want is what they want, what they need is what they need.   And, and thinking about the social etiquette for how to address appropriately is no longer a part of their conversation.   

Now something to note is that I've talked about all of these things but I want you to know that it is a processing difference.   It's not always that these are completely gone.   It's not that vision is gone, as I said, or that hearing is gone; it's a processing difference in the brain.   And so things are changing for this individual as well.   And they're having to learn how to do life differently than they used to as well.   But just take note that just because now the words aren't coming as quickly doesn't mean they can't hear you.   Or that having to look at things straight on means that they're going blind, right?   This is a processing difference in the brain, it's not necessarily a loss of all the functionality all at once, especially.

Some things that are unaffected by this change in the brain, which is a great joy, is the fact that experiencing pleasure gets to stay there.   The part of our brain called the amygdala at the back of our brain is staying quite intact.   And so that's where we experience pleasure and where we perceive threats.    It's sort of our fight or flight mode as well.   So you'll notice that experiencing pleasure becomes a big part of what we're after.   

And so the other thing that you'll notice is that perceiving threats becomes quite strong as well.   And sometimes those threats are perceived and not necessarily true threats.    You will notice things like, for example, someone has walked into the room quickly and because of the vision, being able to focus in one space, that person who approached very quickly sort of bypassed all the peripheral vision that would normally sort of alert this person that someone was coming into the room.   And so now they get very, very frightened because suddenly there's someone right in front of them in their face, making demands of them, or just simply their presence is very alarming.   And so they're perceiving a threat where there isn't really a threat to their safety, but because that's the part of the brain that is still very much engaged, that's the part that is sending the most signals and these other things that would normally send the brain some signals to alert the person that Oh, someone is coming, and it's a reasonable pace, it’s someone who's familiar, all of those types of signals did not make it through in the way that they were expecting and so now there's just this perceived threat.   And so you'll see a lot of behaviors start to come out in terms of, I don't like this, I don't want to be here, I don't feel safe, or things like that, because of the perception of threats.   

If we think about our church environment, sometimes we have a lot going on.   I know Barb has mentioned to you some of my conditions that have helped me to realize this too, in a church environment, we have a lot of sounds, a lot of people moving, a lot of messages coming at our system.   And to be able to process all of that quickly enough to really enjoy it can sometimes be a challenge.   So knowing of the condition of this person might have them being perceiving threats to all of these barrage of sensations coming at them, I think we just need to be aware of that and be able to gently guide a person into some spaces and some time, and probably give a little warning when that that loud music is going to start, or think about how we approach the spaces.   But we'll get more into strategies later.   

I do want to tell you, though, that that idea of experiencing pleasure stays with us.   And there have been some studies about how the brain is affected by pleasure, particularly music, which I think we think a lot about when we think about our church environments and our worship practices.   And so there are actually centers in the brain that come alive, and you actually can, in fact, get a sort of tingling sensation, you sort of say you get goosebumps, or you get that chills down your spine sometimes because there was such a gorgeous sunset, or it's your favorite song and hearing those notes, every time just gives this sort of rush to your system.   

Well, that is actually a scientifically proven fact that our brains activate in certain ways, especially with music.   And in people experiencing Alzheimer's and that form of dementia, we've noticed that there are elements of the brain that really truly come back alive in some ways when there is music being played, particularly music that strikes that chord for them; that is connected with the music that they prefer.   And so I would love for you to read this article, and some of the links within this article, about how memories of music cannot be lost to Alzheimer's and dementia.   It's absolutely a beautiful thing.   And I think it gives us a lot of hope when we think about our worship practices.   And Barb and I will talk about that some more later.   

But I do want to tell you that dementia does happen on a predictable schedule.   It is a period of about eight to ten years in which the disease typically develops.   Now there are set things such as early onset dementia, and that will play with the timeline a little bit.   But it does happen over a predictable set of time.    You will notice changes in memory and then you might notice some changes in vision.    You will notice some changes in those inhibitions and impulsivity, but there is actually a predictable flow to when these things will come and when they will go.    So well, you will see individuals, and it affects every person differently because we all have our own neurological makeup, we have our own personality differences, we have our own things that trigger our happiness and trigger our perception of threats.   And so you will notice lots of individualization to this, however, it does happen in a predictable flow and it takes about eight to ten years to progress throughout someone's journey with dementia.   So I just want to tell you about that.

I want to share with you a few resources that are out there.   We are not experts on dementia, but we have had some experiences with it, with people within our congregations and within our families, and we'll share with you some things about that.   But there are those who are studying it, who are focusing on this, and who have learned a great deal about it, and we have learned a great deal from them.   

One of them is Teepa Snow.   And her website is called Positive Approach to Care.   She's written many, many books.   And she talks a great deal about that predictable flow and that eight to ten-year journey with dementia, sort of describing people as different gems; that they go through the stages of amber and diamond, and these various levels of clarity, and how we can look for the giftings in people still at every stage within this journey through dementia.   And her slogan is always until there's a cure there’s care.   And I think that's a very true statement.   And so we have a lot of great resources that we have utilized that come from Teepa Snow.   

We also very much have drawn from the work of John Swinton and some of the books that he has written and I'm going to ask Bob to read a quote from him at the beginning of our next segment.   But I just want to let you know that he has written some great books and quotes from him come out in our work all of the time.   He has written a book called Becoming Friends of Time, that I would highly encourage you to look at as well as one completely focused on dementia.   And he talks about something we might call the three mile an hour God, and thinking about how quickly we often rush through life when God is really calling us to slow down to the pace at which Jesus walked this earth.   And some of the things about simply taking the time to be, is quite a gift.   

And so I think that we really appreciate his point of view when we think about dementia and how it affects our worship practices and our engagement with one another.   When we think about the ministry of being and the time that we spend with one another and how important it is to simply slow down and acknowledge that we all do have a place to belong even and especially when we're walking through something like dementia.   

So we'll talk some more about these resources and some strategies you can try when we get together next time.   So enjoy some of the reading material that I've mentioned here.   And we will see you at the next session.