Let’s Talk Dementia with Carol Howell

Transcript of Interview: ” Let’s Talk Dementia with Carol Howell”

Mike Barnes:

I think there are so many of us in this group who have a little bit of experience, whether it’s with dementia or Alzheimer’s. It’s something that it’s good to know what you’re dealing with.

Kim Barnes:

Because there are so many varieties, and dementia covers a whole lot more than just Alzheimer’s. We want to talk about that, but we also wanted to bring in an expert. So, I’m glad to introduce you to Carol Howell. She’s a certified dementia practitioner and has written a book called Let’s Talk Dementia. Carol, thanks so much for being with us.

Carol Howell:

Oh, it’s my pleasure to be here today. Thank you for what you do.

Kim Barnes:

Well, we want to start with the fact that I think people hear dementia, and just because of Alzheimer’s being so prevalent, they automatically assume if you have dementia, you have Alzheimer’s. But there are so many types of dementia, right?

Carol Howell:

Right. That is probably the biggest misconception that I get over the phone when I’m working with clients. There are actually over 200 types of dementia. In my book, Let’s Talk Dementia, an Amazon bestseller, I think I say there are 70 or 90 types, and that was true at that time. But since that book has been released, we now know there’s over 200 types of dementia. Alzheimer’s is just one of them. You hear the statistic that every 61 seconds someone is diagnosed with Alzheimer’s, and that is true, but that also means in all those other seconds someone else is being diagnosed with a different type of dementia.

Mike Barnes:

How important is it to find out which type of dementia your loved one is suffering from?

Carol Howell:

It is of utmost importance. I explain it to my folks like this: If you were to go to the doctor and your nose was running and your eyes were leaking, and the doctor automatically prescribed for you an antihistamine without finding out what is going on in your world, you might be taking an antihistamine because you have been crying a lot because you’re in a sad time in your life. That would cause your nose to run and your eyes to leak, so we don’t need an antihistamine for that. Or you might have just had something really spicy to eat, and that can do it too, right? There are reasons beyond just the most obvious for a symptom.

However, over and over again in my world, my clients, when I ask them what type of dementia their loved one has, I often hear “old age dementia.” That’s like saying old age cancer; there is not one. Or they’ll say, “Just regular Alzheimer’s.” The doctor said, “Just here, take this medicine,” and they don’t even know what it is. And I’m like, “Okay, but did they put you through testing?” “Well, no, but they gave me a receptor mender or Exelon with no testing.” Again, that’s like giving an antihistamine when we don’t know what’s going on. Realizing that there are reversible dementias and irreversible dementias, we want to know what’s going on because what if we’re prescribing the most common medicine for Alzheimer’s, which has been proven not to work, and they have a reversible dementia? We’ve given folks a big disservice. It’s extremely important.

Kim Barnes:

And is it the neurologist who can make that diagnosis?

Carol Howell:

You know, I tell folks to start with your family doctor and see which direction your family doctor will send you. I actually started with a neurologist who sent my mama for testing—my mama, Miss Vera Jean—and she was diagnosed with Alzheimer’s-type dementia. But the first doctor we saw was just horrible. We wound up going back to the family doctor, and he did some testing and then sent her to a neuropsychologist. The neuropsychologist is the one who put her through quite a lot of testing, and that’s where the actual diagnosis came through.

Mike Barnes:

You know, one of the things I love about your book is talking about how to talk to someone with Alzheimer’s or with dementia and communicating with them. I love that part of the book.

Carol Howell:

Well, thank you. And I think that most likely is the reason Let’s Talk Dementia came to be. I started writing it actually as a guide for myself. As I went through classes right after my mom’s diagnosis, it was just my way of keeping track of what I’d learned. Then I would watch folks interact with their loved ones with dementia, and I’d think, “No, don’t do that. Don’t say it that way,” or “They can’t help this. This is how you need to respond.” I just wanted to tell everybody, which generally does not go well with most people. “Oh hey, by the way, let me give you some unsolicited advice.”

Kim Barnes:

That’s right. Because I know everything and you know nothing.

Carol Howell:

That’s kind of how it goes over, and you don’t want that. Interacting with someone with dementia is so different than what we normally might do, what is normal in our lives. You know, it is not unusual to enter a room, and you see somebody in that room from behind. You know that’s your mom, and you’re coming up from behind and going, “Hey, Mama,” and then you place yourself in front of them. They’re okay with that because they heard your voice. They knew when you said, “Hey, Mama,” who it was, and they were not startled. Someone with dementia might hear, “Hey, Mama,” may not know that you are that person and that you are referring to them. You’ve come up from behind and touched them on their shoulder or even reached and grabbed and hugged them, and you’ve startled them. They’re like, “What the…” You know, the words come out, and you’ve done it wrong. What you should have done was walk all the way around in front of them and then say, “Hey, Mama, it’s Carol. How are you today?” Then they have seen you. Most of us don’t want to be startled, yet we startle our loved ones with dementia quite frequently. That’s just one of many tips I have on how to effectively communicate with someone, but starting it the right way will definitely set their brain and their minds to be more receptive for what it is you’ve got to tell them.

Kim Barnes:

I love when you talk about therapeutic fibbing. I’ve never heard it described like that, but I thought it was great. It’s something that I’ve been trying to tell my dad about and convince him, as he’s talking to my mom, that there are some things that you just have to be careful how you say them. There are certain ways you can say it that, yeah, it’s kind of a lie, but it’s therapeutic. So, I love the way you did that.

Carol Howell:

Yeah, I work one-on-one with folks, and I had a pastor’s wife. Her husband was a Methodist minister going through very advanced dementia, and I was trying to teach her therapeutic fibbing. She said, “That’s just lying, and I’m a good Christian woman. I just can’t lie to my husband.” She said, “So I’ve decided to call it divine deception.” And I said, “Honey, you can call it whatever you want, but it is being able to help your loved one through a moment in time that is stressful or sad or full of anxiety, to bring them through that all the way to the other side where they are happy and not anxious or not sad.” I believe that the Lord looks down on us and says, “Thank you for being good to my kids,” and that’s what we want to do.

I think the most common example of this is someone with dementia will say, “Where is John? I haven’t seen John. Is John dead?” And you go, “Mom, Daddy died in 1970, and you went to the funeral.” And then Mom goes, “John’s dead? I didn’t know John was dead,” and she starts crying. All we’ve done is take a moment and make it worse for Mom. Now she is grieving again and, in her mind, for the first time. We could go, “Gosh, Mom, last time I saw Dad, he was getting ready to go fishing. You know how that man loves to fish. I hope he catches something, and when he does, will you fix some hush puppies and french fries to go with it?” So now we’ve taken Mom’s mind from “Where is John?” and “Is John dead?” to hush puppies and french fries.

Everybody says music is the international language; it is not. Food is the international language.

Mike Barnes:

You know, it’s true. There’s some food we all have in common, no matter where we live. If we take their mind away from this sadness, even if we have to tell a fib, we bring them to a point of happiness. We’ve treated them well.

Carol Howell:

Right, because they’ve grieved, and they’ll forget, and so they’re going to do it next time they think about it. They’re going to be grieving over and over and over, and there is no time that’s ever a good thing.

Mike Barnes:

Yeah, and you use those examples in the book. I’m going to go see my dad today and show him those examples because my mom actually asked my dad just this week about her mom, who died about 10 years ago, and her dad, who died about 60 years ago.

Carol Howell:

Oh, wow. Yeah, she’s way back in time then.

Mike Barnes:

Way back. So, it’s going to be good for everyone to read this and know about this because talking to someone with dementia or Alzheimer’s is so tough. We want them to know, and we have to realize that it doesn’t… In some ways, I guess it gets to a point where it doesn’t matter if they know. I know that sounds crass to say, but it’s not going to help them to know.

Carol Howell:

Exactly. Realizing that with dementia, especially Alzheimer’s-type dementia, we lose our memories in the reverse order in which we gain them. So, we’re going to forget great-grandchildren, then we’ll forget grandchildren, then we’ll forget children. We’re going to go back in time. When you’re communicating with someone with dementia, realizing that they probably remember their mom and daddy because mom and daddy existed before them. Those memories are all over the brain. Their older siblings were before them, their grandma, their grandpa, their aunts, their uncles. That’s a time in their life they probably can recall, and that’s what you want to talk with them about. Or talk with them about college if they remember going to college or high school. Yesterday, I was doing music with a group of individuals in memory care, and I said to this one lady, “What was the best Christmas you ever remember, and what did you get for a gift?” I’m thinking she’s going to say something like a shirt or whatever, and she said, “A new car.” I said, “You got a new car?” She said, “I did. My daddy bought it for me. It was a four-door Ford.” Whether that story is true or not, she had the best time telling me about it, so we talked about it.

Kim Barnes:

That’s awesome. So, what is the difference between dementia and Alzheimer’s?

Carol Howell:

Oh, yeah, that’s just so important. Alzheimer’s is a disease. So is Parkinson’s, Huntington’s, Lewy body, AIDS—all of these are diseases that cause dementia. Dementia is the symptom of the disease, just like the runny nose and the leaky eyes we talked about earlier were symptoms of something. We need to know what the dementia is a symptom of. Alzheimer’s is a disease of the brain; dementia is the result of that diseased brain. It’s very important that we know. I’ve worked with clients for 16 years. I had a gentleman and his wife come in. Normally, the individual with dementia does not come to my coaching sessions; I’m normally working with the caregiver. But she wanted him to come, and I watched his posture and how he would just freeze. His whole body would just freeze, and he would be so hard and stiff, and then he would just release like he was exhausted. I’m thinking, “Okay, this is not normal posturing for Alzheimer’s.” I told her, “I am not sure what type of dementia your husband has, but I don’t think it’s Alzheimer’s. I think you need to pursue a different doctor.” She did. She wound up at the Medical University of South Carolina, and we found out that he had normal pressure hydrocephalus. They put a little shunt in his skull to drain off that extra pressure, and it just left a little raised ridge to drain off that extra fluid. His dementia symptoms were 75-80% gone the next time I saw him. He had spent months believing he had Alzheimer’s. I had a client last week who had been in memory care for several months. She had a urinary tract infection; she did not have Alzheimer’s. Her family put her there because they thought she had Alzheimer’s. She had a UTI that needed cleaning up. They got it cleaned up, and she moved to assisted living and is now in charge of one of the departments there in the community.

Kim Barnes:

Wow. We’ve heard a lot about UTIs causing a lot of issues. Is there a way to prevent Alzheimer’s?

Carol Howell:

Yeah, that’s the huge and amazing and wonderful news. When my mama went through her journey with dementia, there was nothing like this that I had heard of. It’s just in the last two years that this information is really coming out. What we know is the cause of the leading killers in our world—heart disease, Alzheimer’s, many cancers—is inflammation. Inflammation in your body is not your friend. I’m not talking about where you cut your finger and it swells a little bit; that’s your body reacting normally. But when you have systemic inflammation, it is horrible. It affects your gut, your heart, your brain. If one is being affected, they all are. We know that reducing inflammation in the body reduces the chances of Alzheimer’s drastically. We know that eating a plant-based whole food diet is one of the most amazing things you can do to heal your body of that inflammation. Getting blood sugar under control and getting cholesterol under control all happen with plant-based whole food eating. Eating with other people, socializing with other people, being outside and having your feet in the grass—unless you live in Florida where there are lots of snakes and we don’t do that. Attending a house of worship, whatever your type of worship is, may be different from mine, but that connection with that greater being is very healing for the body. We know when all those things come together, it reduces your chances of Alzheimer’s anywhere from 90 to 97 percent.

Mike Barnes:

Great information. Carol, thank you so much. We could talk all day because this means so much to me as the son of someone with Alzheimer’s, and I know you, Kim, because of your mom having dementia. Thank you so, so much.

Carol Howell:

My pleasure.

Mike Barnes:

Again, Let’s Talk Dementia is the book. I highly recommend it because I got a lot of information out of it.

Kim Barnes:

Thank you. Just so many things to know.

Mike Barnes:

Yeah, it’s just amazing. I know a lot of you out there are going through what we’re going through with someone with Alzheimer’s or dementia. Having the facts, having the information helps so much.

Kim Barnes:

Absolutely. If you have other topics you’d like us to tackle, just let us know.

*This transcript is auto-generated. Please excuse any typos or mistakes.