Welcome to It’s my turn to care, we know the challenges you face caring for someone with dementia. That's why each week we bring you tips, strategies, and most of all, support as you navigate your role as caregiver. Let's get started [00:15.6]
Dave: Hello and welcome to It’s my turn to care: Secrets for the Dementia Caregiver. My name is Dave parks and I'm an owner of Home Care Assistance and we're located in the Northern part of Tarrant County in the great state of Texas. It's our goal to bring you tips, strategies, secrets, and all the support you need as you care for someone suffering from dementia. I sincerely consider an honor and privilege to host this podcast and bring you some of the most knowledgeable and insightful people in the industry. Case in point is our guest today, Janet Standifer. She's a certified dementia trainer and consultant through a positive approach to care, which is a Teepa Snow program that my wife went through as well and she just loved it, so I know it's a great program. She's also a speech language pathologist of 38 years. She's worked with neurological disorders including dementia; and we really are excited about having her with us on our show. So Janet, welcome so much. [01:27.2]
Janet: Thank you Dave. This is exciting and I really want to thank all of you who are listening to this podcast because it shows us how invested you are in, in taking care of your loved one. I've been in this field a very long time and not only have I worked with someone who is living with any form of dementia, but I've had the opportunity to take care of those who are caregivers, care partners, and working with even the healthcare professionals and the community and what learning how to deal with someone who is having these skill loss. So what I wanted to do today was briefly talk with you about what happens to the brain when someone is living with Alzheimer's disease. It is a very difficult situation because as we all know, the disease does progress and I think it's important you understand what's happening to the different parts of the brain so that it allows you to take better care of your loved one. [02:29.9]
One of the questions is, well, what is dementia? And how is it different from Alzheimer's disease? And that is, has been asked of me so many times in all my workshops, so let me clarify that. Dementia, well, it's both a chemical change in the brain; it's also a structural change in the brain. What does that mean? Well, it means it may come and go. Sometimes a person can do something and sometimes they can't do that. It's a structural change. What does that mean? Well, permanent, the cells are shrinking and dying and then the chemical changes, they'll vary, the cells are producing and sending less chemicals and sometimes your loved one can shine. They seem like their old self and then 10, 15 minutes later that changes. So it is something to be very much aware of because I've had some families say, “Well my dad just, he got up this morning but he won't get up second. And I think he's just lazy.” Well, you need to understand it's possible that that chemical rush is what allowed him to get up this morning, but it's no longer there as of this afternoon. Dementia is. [03:41.6]
Dave: I thought about what you were talking about this this, today when I went running and I went running for the first time in a long time and I thought about, you know, our time together today and I thought, you know, there's people when they have a broken leg, I can tell when someone has a broken leg. So I don't expect them to be able to walk or to run or to move around very quick cause I know what's wrong, I can see what their limitations are. But when you think about dementia, you can't see it. So I thought, well this is great information for those that are caring for those with dementia because we can't see what's inside someone's head. But there are real changes going on, aren't there? [04:26.6]
Janet: Oh my goodness. Yes there are. And we're going to talk about that in just a minute and you brought it out. I like your analogy Dave, about the broken leg because you can't expect someone to do something that is no longer capable of doing it. (04:38.9):
Dave: So can you talk a little bit about what the differences between dementia and Alzheimer's? I mean,
Janet: Yeah.
Dave: I still think those words used interchangeably and I don't think that's really correct.
Janet: Well, I agree. And so I think what I need to do is start a very general brief description about what dementia is because that will help us understand that Alzheimer's is actually a form of dementia. Because all dementia means that two or more parts of the brain are dying, it's chronic, it can't be fixed. It's progressive, it's going to get worse and it's terminal, it's an umbrella. And dementia is a syndrome. Unfortunately, one of the main causes of dementia is Alzheimer's disease. It causes that progressive dementia. So you can't separate the two. It's like some of my colleagues have used cancer, I have cancer, but you have to know what's causing it. I have dementia, Alzheimer's disease is causing, it's the number one cause. Does that make sense? [05:39.9]
Dave: Yeah. So I've used that analogy myself. So someone will say, well, “I have cancer.” So the first thing you think of, well, “what type of cancer?”
Janet: Exactly. And then then once you have that diagnosis, the physicians, that the community knows better how to provide a treatment to at least improve that person's quality of life.
Dave: Yeah. I think one reason why they use them interchangeably, so I want to confirm this with you, about 70% of those with dementia have the form of dementia we call Alzheimer's disease.
Janet: Hmm..hmm, yes it's the high highest rate. However, there or at least eight types of dementias that have become an even more popular, the Alzheimer's then the Vascular, Lewy body, Frontotemporal dementia, but Alzheimer's is still the leading cause of dementia.
Dave: So talking about Alzheimer's disease, I mean we all forget things, but we don't all have Alzheimer's disease, so how can you know that there's a difference? [06:41.3]
Janet: Oh, that's a good question. Number one is if you ever feel like that your memory issues are bothering you, always go see a physician and get tested that can do a brief cognitive testing with you. It's really important to understand that normal and there's normal ageing and not normal ageing. In normal ageing, one of the factors is there is going to be a little bit of memory loss, may not remember things. The good thing is you remember that you cannot remember things and it may be something as simple as, “Oh, I forgot my doctor's appointment today,” but the good news is you remembered that you forgot your doctor's appointment. The problem is when the memory starts becoming a problem is when it interferes with your daily life. You leave the stove on every day or you forget your daughter's name or you forget to start taking your medicine every single morning. Now— it's becoming a problem and it's becoming a safety issue. So let's go talk to the doctor and see if it's what could be going on. It may not be related to dementia, it may be related to medication issues or an infection in your body, depression. There's a whole plethora of other things that could be causing problems with your memory. [07:54.4]
Dave: Hmm…Hmm I heard someone describe it like if you walk into a…cause we all have that happen to us— we walk into a room and they forget why we walked in.
Janet: Yes.
Dave: If someone distinguished it for me by saying okay you walk into your room and you forgot why you walked in, that happens to everyone and that doesn't mean you have Alzheimer's disease, but if you walk into a room and you forget why you walked in and then it had to get out.
Janet: Hmm...Hmm, you never recover from it, right?
Dave: Yeah, so that may, could be an indication that you need to get checked out.
Janet: Yes. Yes. And my, I always say if you're concerned about it, it doesn't hurt. It doesn't hurt to get checked and it may mean nothing, but take the side there and let's just see what's going on and it could relax you and help you. Not worry so much. [08:48.3]
Dave: So can you talk a little bit more about the physical, what's actually going on in the brain that we can't see, that might help those that are listening have a better understanding and appreciation of what's physical going on.
Janet: Okay, I will do that Dave. The overall brain is shrinking. The normal brain weighs about three pounds and by at the end of the Alzheimer's disease, it has shrunk down to one pound. So keep in mind with all that shrinkage, there are so many parts of the brain that are dying. The cells wither and die, the built is a lost. It's very important to remember though that with Alzheimer's the loss is predictable, however the experience is individualized. We do not want to take someone and compare them to another the person and that has done very often because a person may not lose certain areas as quickly as another person. [09:51.7]
Dave: Hmm..Hmm.
Janet: The first problems with the Alzheimer's is in the left side of the brain, and just by the way, dementia is usually starts unilaterally, any form of dementia. The Alzheimer's starts on the left side of the brain, so if you were to take your hand and put it on the left side of your head and then go towards the middle, inside that left side of the brain, which is the temporal lobe, we have an area called ‘The Limbic System’ and ‘The Hippocampus’, you know it’s a bunch of neurological jargon there, but most important is it starts with the Hippocampus. That is the learning and the memory center and that is the part that the Alzheimer's disease attacks first. So it's impossible to ask your loved one to remember things that have just happened recently or to try to teach them how to learn to use an iPhone. And which is a big mistake a lot of my families do is they love their mom and dad so much, they want to give them an iPhone so they can communicate on Facepage, but they're not going to be able to learn that new information. [10:56.5]
And then that disease progresses to the whole left side of the brain called ‘The Language Area’ and that deals with understanding information and in speech. So we have to be again careful with understanding all of that. So once that language starts changing, we're going to have to change our ways to communicate with that person.
Now that the disease has affected the left side of the brain, it's going to move. If you put your hand on your forehead, that is the area that deals with what we call ‘Executive Functions.’ What does that mean? It means that a person can have, has difficulty reasoning and using good judgment, seeing your point of view; that's why we don't ever want to argue with someone.
Dave: Right.
Janet: Who is living with Alzheimer's, and also trying to help this having a really difficult time staying focused on the task.
Dave: Hmm…Hmm. [11:56.1]
Janet: They may want to move around a lot. So it's when they hit this stage, this is where we need to really watch when they're driving because it could affect their driving when you can't use their reasoning skills or their judgment skills or they lose their attention and those types of things. Does this make sense?
Dave: Hmm. Yeah, so a lot of times we'll hear about couples arguing and a lot of times it's the one spouse that say has a healthy brain and the other one has all timers and they try to correct the one with Alzheimer's, but they just get into an argument and that has to do with the disease itself, it's not that they are argumentative or they disagree, it's just that's the, it's kind of the disease talking in a way.
Janet: Yes, exactly. If we can't argue with someone who is no longer capable of reasoning or using good rational decisions, it is as if you're arguing with someone who's younger, like a two or three year old, you're not going to win that battle. And all it's going to do is guess the light of the situation. Yeah [12:59.3]
Dave: Right…right.
Dave: So I heard someone describe it like “They can't enter my world anymore, but I can try to enter theirs.”
Janet: Yes.
Dave: I can try to understand where they are. They don't necessarily understand where I'm coming from anymore as the disease progresses. It’s different.
Janet: That's exactly right! And when we talk about the communication component, we obviously emphasize that…so much that this person cannot, can't change. We're the ones that has to make the changes and we have to understand what changes to make as well.
Dave: Yeah, I think that's the probably the one of the most frustrating things we hear from families is the kind of that little bit lack of understanding, which creates anxiety, which creates the disagreements. And I think the more people can understand that, even though going back to the broken leg example, physically, there's something going on in their brain that is not allowing them to function the way we're used to functioning, so. [14:07.0]
Janet: That's exactly right. And you're literally losing brain cells, so we can't expect him to recover what has been lost.
Dave: Hmm...Hmm.
Janet: One of the things I do point out though is the one of the areas that's not affected is hearing.
Dave: Okay.
Janet: Cause you can see, when a person can't understand, people want to speak louder. Alzheimer's disease is not creating a hearing loss. That person may have already had one prior to the diagnosis. So you have to be careful, not yell, raise your voice, because with the loss of a comprehension, they're going to listen to your tone of voice and your facial expressions. And that could set the stage on how this next conversation is going to go.
Dave: Right…right.
Janet: You have to be real careful not to. And I do unfortunately see that a lot with caregivers is raising the voice because they can't understand what's going on. [14:59.7]
Dave: Right. A lot of times we think we can solve problems by just being louder.
Janet: Yes. Oh, go ahead. I said we are being fun, no.
Dave: Because if either one has Alzheimer's, that's sometimes how we communicate. Right? Like who has the louder voice?
Janet: Yes. And on them, you know who's going to win on that one.
Dave: Yeah. But I have talked to audiologists and they have said kind of the opposite in that, and I don't know if you've heard this before, but that hearing loss can maybe not cause Alzheimer's disease, but it might be a factor.
Janet: Hmm…hmm.
Dave: So the, the idea being that if you, if you're in so many people don't wear hearing aids, I think it's the least that outside of maybe certain medicine with families all the time they have hearing aids but they don't wear them. I don't know how many times I hear that; but what I've been told is it's kind of like garbage in, garbage out. If you don't correct your hearing, then the confirmation coming into your brain is not clear. So then when you try to use that information, it's not going to be clear the other way. Have you heard that as well? [16:10.6]
Janet: Yes, I actually have some articles and it's, it's more of a dementia component because they can't isolate themselves. The sensory part has been affected and they aren't as, they're not as social. They can't understand what's being said. There are a lot of factors with that, you bet you. But in this case the I have had to answer this question in some many of my sessions, can you not hear anymore because of the disease and we have to kind of work with that.
Dave: Right. Right.
Janet: That the disease at all does not affect that part.
Dave: Sure, sure.
Janet: Like what you said is exactly, that's what I have read and researched.
Dave: Yeah.
Janet: I was just gonna say some, there were a few other areas that.
Dave: Yeah.
Janet: I think it's important that caregivers understand is when a person goes through the dementia process, they may maintain their strength longer, well they will maintain your strength longer but lose their skills first.
Dave: Oh okay.
Janet: And this is why because the part of the brain, if you put your hand on top of your head, that part of the brain is damaged. That's the Sensory Motor Area, Fine Motor Area. [17:12.7]
Dave: Hmm…hmm.
Janet: So now the caregivers are having to be the skill.
Dave: Yeah.
Janet: They're having to take over and do all the ADLs, you know, the dressing, the feeding, the toileting, all those areas because that person now is losing that ability to perform for themselves.
Dave: So my dad had, he actually passed from Alzheimer's disease and we would be talking and generally he was actually a very social person. But as the disease progressed he became very quiet, although he enjoyed being around people he knew, but he was very quiet. But every now and then he would say something that was a memory from when I was five years old playing baseball or something, but he did remember that we just got back from dinner.
Janet: Hmm…hmmm.
Dave: So can you talk about that dynamic a little bit? [18:06.6]
Janet: Sure. As I mentioned earlier, the part of the brain that controls retaining new information is ‘The Hippocampus.’ That was new information, what y'all just had for dinner. Long-term memory is stored away in a different part of the brain. It's already been learned, so he's going to be able to receive information from that area.
Dave: Okay. So anything else you want to tell our listeners that might help them kind of understand as they are dealing with their loved one that has dementia?
Janet: Well, what I'd like to do is just real quickly finish up some of the areas that I think sometimes, many times our caregivers overlook that is affecting their ability to function every, every single day. Well, some are times, many people don't understand how the vision changes.
Dave: Okay.
Janet: Because of the way we approach them, it could affect the way that that person's going to deal with them, because the visual changes. [19:06.6]
If you were to put your hands out to the side and look forward, you may see your arms on the right side. And when we were about 40 years old, we start losing our visual field, our provincial visual field.
Dave: Okay.
Janet: As a dementia progresses, in the moderate stages, we're down to a binocular vision. So it's very important for caregivers to understand that when they're dealing with their loved one, to not approach them from the back or the side, but to go to the front when they want to give it a dress, they need to make sure they're loved one sees.
Dave: Hmm…Hmm.
Janet: The clothes, they see the food on the plate, they see what's going on. Because of these visual changes, their world has really narrowed down to what's right in front of them.
Dave: Hmm...Hmm.
Janet: And that could impact everything that they do that can impact when they're walking. If they don't watch it, they can run into chairs on the side or a cabinet and cause him to fall. [20:07.7]
They have to be really careful what's on the floor because their ability, their depth, perception is when they're walking, they can't see how far something is or how deep something is. Be very, very aware of that as this disease progresses.
Dave: Hmm…Hmm
Janet: So the bottom line is understanding how the brain’s changing will help them understand, help you understand how, why you need to change your way of working with these people as a healthcare professional or providing care as a family and a caregiver.
Dave: Hmm…Hmm.
Janet: They're doing the best they can. So what we have to do is change our way and maintain a positive relationship. You want to keep that relationship as healthy as possible at all costs.
Dave: Yeah, I think that's very helpful for those that are that are caring for someone with dementia. So Janet, you have so much information. Would you mind doing another show with us? [21:03.2]
Janet: Oh, I'd love to. I'd love to.
Dave: Thanks again. So Janet, if someone wanted to get in touch with you, how would they do that?
Janet: They could call me, my telephone number is (817) 901-4658 or you could email me at janet@jstandiferconsulting.com or you can review my website and there is a place on my website where you can also email me and that website is jstandiferconsulting for consulting or dementia and perspective. You can reach my website either way. [21:40.6]
Dave: Okay, great. Thanks so much Janet. And as always, I want to encourage everyone to give us a call here at Home Care Assistance at (817) 349-7599 or visit our website site, HomeCare AssistanceFortworth.com. And we have a special website for this podcast called, ItsmyTurntoCare.com. Thanks so much and we'll talk to you on next week.
Janet: Thank you. Bye bye.
Dave: All right. [22:08.6]
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