The Truth About Lewy Body Dementia: Separating Fact from Fiction

Dementia is largely a mysterious disease. What do we really know about it and its different branches? Join us in conversation with Lori La Bey who talks about the symptoms of Lewy Body Dementia. Enjoy the show!

Margaret Manning:

My guest today is Lori La Bey. Lori is a very strong advocate for changing the conversation about dementia and Alzheimer’s. She has an amazing website called alzheimersspeaks.com, and she also hosts a fascinating series of Alzheimer’s speaks radio shows and Dementia Chats. I’m really happy to have you here today, Lori. Welcome.

Lori La Bey:

Thank you. The Dementia Chats is where we have people with dementia calling in and talking about their experiences on video. What I’ve been doing lately with the radio shows is, I interview anybody and everyone. Sometimes I interview people with dementia, but I’m starting to have people with dementia actually co-host with me.

Margaret:

Oh, that’s a cool idea.

Lori:

Yeah, it works really well.

Margaret:

You are a total innovator in this area, and I’m really grateful to have you here. There are some topics of great interest for our community, and I’d really like to hear your expert opinion on them. One particular question I would love to ask you is about Lewy Body Dementia. I don’t know very much about this condition so could you tell us what it is? How does it differ from Alzheimer’s and other forms of dementia?

Lori:

Sure. Lewy Body is something that we’ll be hearing more and more about. It’s really getting more prevalence as people begin to discern some of the symptoms a little bit more. A lot of times, people with Lewy Body don’t have the cognition problems we usually associate with dementia. They’re able to talk and do different things, and so they show different signs.

Although, some people definitely have fluctuating cognition problems as well. They can be really on tune for a long period of time, and then all of a sudden, they’ll just be out of whack. It might last hours or it might last days. Most people really have a difficult time with this disease in terms of trying to diagnose it.

One of the symptoms of Lewy Body is hallucinations. Sometimes they can get really vivid, even frightening, and the person would literally attack, trying to protect themselves. Because of this, some people have chosen not to sleep with their spouses anymore.

Then there are other hallucinations that won’t be that frightening. They can be really visual though. They can involve taste or smell. Some talk about the smell of fire or burning rubber, which can be really dangerous if there were a real fire. They say, “We can’t really discern the difference between the real fire and the hallucination.”

Some people with Lewy Body have Parkinson’s symptoms. They might shuffle; their arms and legs might get a little stiff. When their gait is off, they can have more problems with falling, which doesn’t lead to a medical conclusion of dementia.

Other possible symptoms include drooling, runny nose, slumped posture. The blank stare is another one, which can also pertain to Alzheimer’s depending on when it happens. People will look like you and I, and then all of a sudden their whole expression would go blank.

The REM sleep disorder can be an important symptom to consider. It involves moving, talking while asleep and acting out some of those nightmares. People say that it’s a horrible experience. A lot of this can happen before the REM sleep disorder is even diagnosed because many people have trouble sleeping, and it’s difficult to catch the disease.

Sensitivity to anti-psychotics is also something to look for. As people begin experiencing some issues, it’s really easy to go to the doctor for medication. A lot of times they’re prescribed an anti-psychotic, and that can make things worse for them. You’d think it would help, but it won’t.

Depth perception is another issue. I’d never forget Norms McNamara talking over in the UK about walking on a carpet that was a deep green color with gold vines in it. Because of the issue with his depth perception, he saw the vines pop up out of the floor, and he thought he was being attacked by snakes.

Margaret:

These symptoms you just listed are absolutely fascinating, and obviously it’s very difficult for people to deal with them. I don’t really know what happens with dementia in the brain, but does Lewy Body affect the brain in a different way? Or does it inhibit a different part of the brain? How does it work?

Lori:

I’m not a doctor or a clinician, so I hate to get into too much technical stuff. Typically, the different types of dementia attack different portions of the brain. When I talk with people who have dementia, and they share what they’re hearing from their doctors, it becomes clear that the information we have is still kind of inconsistent.

This is still a baby disease. It’s been around for a hundred years, but there isn’t a unified naming system yet. For example, back in the day, a lot of people were diagnosed with Alzheimer’s, but now they’re told they have a mild cognitive impairment. They say, “Hey, there’s nothing mild about this. I still have the same symptoms, but you switched my category.”

I don’t know if we really truly know how to distinguish between this group of conditions. Part of that just might be me because I concentrate more on the interaction with people. Among the physiological signs are fluctuating blood pressure, urinary tract infections, constipation.

Some will sweat more or sweat less. Some will faint. Some people can get really aggressive or depressed. It’s really a mixed bag, and a lot of these symptoms can also overlap with dementia, which makes it hard to pinpoint.

If a symptom occurs only once here or there, a lot of times we forget about it. That’s why it’s important to write it all down, like keeping a diary. So, if someone is fainting, or if they’re feeling their heart racing, make those notations of time and date and the symptoms. This way, when you go to the doctor you will have something more concrete.

Margaret:

While you were talking, I was thinking that this Lewy Body Dementia must be very difficult for care partners or caregivers. They wouldn’t know what to expect from day to day. You’ve just listed maybe 20 symptoms that could happen. From your experience as a caregiver, how do you actually deal with that?

Lori:

You have to try to put yourself in the shoes of the person with dementia. How do they deal with it? They don’t until it happens. That’s where dementia really calls on us to be more compassionate and more spontaneous in terms of our reaction because the person who is experiencing these episodes has absolutely no control over any of it. Sometimes we can get blaming or irritated, or even embarrassed, and that isn’t doing either of us any good.

Margaret:

It seems like caring for people with dementia requires a mind shift. I think that if somebody had told me the story of walking on the grass and the vines coming up around, the first thing I’d think would be, “Oh my gosh, that’s weird!” or “That’s frightening.”

What you should say instead is, “That must be really difficult for you.” We should accept that someone thinking the rug is grass is part of the disease. It’s not anything to be laughed at or to be worried about; it is simply what they are dealing with.

Lori:

What you said was perfect, because that’s called validation. We often try to argue and correct, and there’s one statement that is always true where dementia is concerned: “You’ll never win.” You’ll never win when arguing with somebody with dementia, so don’t do it.

It is important to validate their feelings because what they’re going through is totally real to them. We can’t change that. I remember when my dad came to my house one day, and we were going to have a lot of people over. I told my dad “Dad, you have to pull up really close to the driveway.” Then I went out, and he was 15 feet from my garage, when I wanted him 3 inches from it. He said, “I’m as close as I can get.” I was like, “What?”

Margaret:

I remember there’s a movie about dementia. I can’t recall its name, but it was about a woman in her 50’s who had an early onset of the disease. At the end, the person who became closest to her was her daughter who could somehow groove with her. The child just got it; she didn’t worry about the fantasy and the craziness. She was just there. Have you seen that movie?

Lori:

Yes, though I can’t think of the name either. I wish I could because it’s the perfect example. I talk about that all the time because I think children can teach us a lot. They don’t have the egos that we as adults have. They haven’t learned the right and wrong ways, they just want to play and interact; to love and be loved and to have fun. So they don’t judge.

I’ll never forget my daughter in kindergarten. I went to a conference one time and her teachers said, “Your daughter is amazing. She helps this one girl out who’s in a wheelchair and has great difficulties. She also helps this other girl out that’s a little slow.” I laughed and I said, “You just don’t get this, do you?” and she asked, “What do you mean?” Then I said, “She doesn’t see any of that. She doesn’t see them as different. She sees how they’re the same.”

I think that’s one of the beauties of childhood that we have to seriously consider. If we look at our differences, that pushes us away and creates enemies and boundaries. When we look at our similarities we create bonds and friendships, and that helps us grow as people.

Margaret:

You made a comment when we were talking offline about being dementia friendly. As you were talking, that’s what I was thinking about—being friendly with it. Instead of trying to make an enemy of yourself and fight it, just be friendly with the person who’s going through it. In terms of Lewy Body Dementia, are there treatments? Are they very different from Alzheimer’s?

Lori:

To me, they are not totally different. Most of them are being medicated, but nothing is certain to work. Things are not black and white with dementia. People can have multiple diagnoses, like Lewy Body and Parkinson’s or something else. It’s the same as having heart disease and diabetes.

It’s important to look at the whole person. We also have to be really conscious and careful, in terms of these dual diagnoses. I think families have to really start questioning doctors on medications. If they’re seeing changes, then they need to address them because they could be induced by a medication conflict.

Sometimes even going to the pharmacist and having medications reviewed could make a difference. To be honest, doctors don’t know all the counter indications with all the medications. You can typically go to the pharmacist for free or for a low fee and get a consultation. You can have the medicines assessed and get that information back to the doctor so adjustments could be made.

Margaret:

Every time I talk to you I’m in awe of the caregiver/care partner role with regards to dementia, Alzheimer’s and Lewy Body. It’s especially true if the person is someone you adore and love; when you see them going through all of this, and there’s nothing you can do to help them get better.

Working through it and accepting it is challenging. I hope that you get good training over there. I don’t know what the situation is on a global level. There must be some programs that help people deal with these complexities.

Lori:

Yeah. One of the problems with these programs is that the training can be too academic, and I think we have to speak at the family level. It’s nice to have the stages, but that doesn’t help a family live with it graciously.

Margaret:

I agree.

Lori:

When I talk with people with dementia and their families, they say what they want most is ideas on how to be able to live better, how to build a tool kit. Yet we still have a lot of companies and organizations trying to sell the silver bullet, and there isn’t one answer for any of this.

When the symptoms are ebbing and flowing in a day, that makes it even more critical to have that tool kit. It helps remove our fears of failure. I think the biggest fear of failure we should have is for not trying.

Margaret:

That’s pretty powerful. In terms of treatment for the whole spectrum of dementia I think most important is the human touch. That humanity that we all need and you do so well. I want to say that your website is so helpful. There are lots of available resources at alzheimersspeaks.com. I would advise people to check it out. Also, we mentioned the shows that you host, Dementia Chats and Alzheimer’s Speaks, where you bring the talk to the people level.

Lori:

Thank you. I think it takes all of us at all different levels: the people with dementia; those loving them and caring for them; the professionals caring for them; the researchers; those providing housing; advocates. It’s everybody’s voice.

The more we can understand everybody’s perception, the easier it’s going to be to shift our dementia care culture. Then we’re going to really know what we’re dealing with. Also, when we listen to all those voices, we get amazing creative ideas because people are willing to share freely to help the next person.

Margaret:

That’s the human spirit; it’s amazing. Before we close, I wanted to mention the recognition you just received from Maria Schreiber concerning your work. Tell us about that.

Lori:

She published an article in her Sunday paper where she honored me with the recognition of being an architect of change for humanity.

Margaret:

Congratulations! Like you said, dementia is a baby illness. We don’t know much about it. You’ve been at it for 30 plus years with your mom, and now you’re doing so much on your own. I’m amazed with what you’ve achieved. Thank you so much for being here, Lori.

Lori:

Thanks for having me.

Margaret:

It’s my pleasure. Thank you.

Can you think of a time when your depth perception was different from someone else’s? How did that feel to you? Please join the conversation!