Episode Transcript
[00:00:10] Welcome to this episode of Louis Body and mindful caregiving. I made a mistake, and I need to own up to it really quick. In this episode, I say that there are over 400 different types of dementia, and I am wrong. Absolutely, I am wrong. I raise my and I admit that there are 100 different types of dementia that have been cataloged. And so when you come to that part, don't flip out. Know it's only 100. Thanks for listening. And now onto the episode. Hello, and welcome back to Lewy Body and mindful caregiving. I'm Crystal Jacobski, your host, and I'm glad that you're here this week. I want to talk about Lewy body dementia versus other forms of dementia, because people have been asking, and I just thought I'd give you a little bit of information.
[00:00:56] I always start with self care first. So what did I do for self care? I actually went to dinner in a movie with some friends. We did dinner out and then movie at our place, and it was just lovely to laugh and enjoy and remind myself that I still have life in me. Even though my mom is declining and things are challenging, it was nice to enjoy for a little bit. So, moving back to our topic today, Louie body. Now, there's so much information about dementias, different type of dementias, and you can really end up feeling like you are swimming in trying to understand and grasp and find.
[00:01:49] There are over 400 types of dementia that have been cataloged, if you will. So there's just a lot people think that Lewy body dementia is a rare thing, that it is just not out there very much. But in reality, it is the second most common type of progressive dementia after Alzheimer's. Alzheimer's is number one. And then there's Lewy body. Lewy body affects more than a million people in the United States alone.
[00:02:28] The thing is that the Lewy body symptoms are so wide and unique to each individual that it can closely resemble other more commonly known disorders, like Alzheimer's disease and Parkinson's disease. And so it is just really widely under diagnosed. So we say that a million people in the United States have it, but that number could be way easier or larger than what we actually think that it is. What we believe that it is. Right now, Lewy body dementia is an umbrella term for two related diagnoses. You have Lewy bodies, which are the protein deposits randomly all over in the brain, and they might cause challenges in movement, like a tremor. So I want to share with you ten of the biggest things that you should absolutely know about Lewy body disease. Lewy body dementia. And I am taking this straight from thelowibodydementia.org. It's l b as in boy, d as in dog. A. It's the Louisbody Dementia association website. These people are amazing and they have so much information for you and you can call them and ask for advice.
[00:04:04] They also accept donations and whatnot. They are fantastic and if you want more information, I highly encourage you to go check them out because they could be a wonderful resource for you. There are some facts that they say, and like I said, this is directly from their site. There are some facts that you should really know and I'm going to help share those right now. So Lewy body dementia is the second most common form of degenerative dementia.
[00:04:40] The only other form of degenerative dementia that's more common than Lewy body is Alzheimer's disease.
[00:04:48] Lewy body is an umbrella term for a dementia that is associated with those protein deposits in the brain that is really the marker of Lewy body dementia.
[00:05:01] The second thing they want you to know about LEwy body dementia is that it can have three different common presentations regardless of the initial symptoms. Over time, all three of these presentations of Lewy body dementia will develop similar cognitive, physical, sleep, and behavioral features. But these are the ones that this is what happens. Some individuals start out with a movement disorder that leads to a diagnosis of Parkinson's disease, and then they later develop dementia. Now that is known as Parkinson's disease dementia. They have a tremor, they have a shake, and then they have memory loss and challenges. That way.
[00:05:44] Another group of individuals will start out with a memory disorder that may look like Alzheimer's disease, but over time, other distinct features become apparent that will then lead to a new diagnosis of Lewy body dementia. And the third one is a small group of people that first represent with things like hallucinations or behavioral problems and difficulty with complex mental activities that can lead to a diagnosis of Lewy body. Now, my mom actually started presenting with a little bit of a parkinsonian shake, and then it was hallucinations.
[00:06:31] So my mom has Lewy body dementia with parkinsonian tendency.
[00:06:36] Just FYI, the most common symptoms, this is a great one for you to know. The most common symptoms of Lewy body dementia include impaired thinking.
[00:06:50] They call it loss of executive function. And executive function just sounds like a really big word that you kind of go, what does that mean? Executive function is like you're planning. It's processing information.
[00:07:06] It's more detailed stuff.
[00:07:11] Impaired thinking is also in your memory or the ability to understand visual information.
[00:07:17] That's the first one.
[00:07:19] There are also fluctuations in cognition, attention, and alertness. One moment they can understand everything you're talking about, and the next minute, they're like, wait, what? And they'll ask you to repeat it, or they'll be confused about what you were talking about. Or one moment they're completely attentive and they're with you, and the next minute, they're off looking. I mean, squirrel? They're totally not there.
[00:07:45] Another one is problems with movement, including tremors, stiffness, slowness, and difficulty walking. Now, my mom has gradually. She's always been stiff in her walking, and she's kind of moved to the side on the sidewalk. If she wasn't holding onto me or somebody else, she would walk crookedly. Or she's super stiff. It's like her muscles are struggling to move. When she's sitting down, she has a tremor in her head, and she has a hand tremor that she usually has to put her second hand on top so that she can use the mouse kind of thing. So there's where my mom is. Visual hallucinations. Now, this isn't in everyone, but it is common in Lewy body dementia. Hallucinations, seeing things that are not there. My mom sees the walls crawl, or if there's a pattern on the floor, it looks like it's moving. Things are vibrating. They're not still, even though they are, she sees things that are not there.
[00:08:47] Sleep disorders are extremely common for people with dementia. In fact, a lot of people with dementia, Lewy body dementia, will act out their dreams, and it's a big concern. So you want to make sure that the area around their bed is clear and safe and that there are no hard edges that they might fall on to get hurt if they were to start acting out their dreams.
[00:09:12] There are also behavioral and mood symptoms, including, like, depression or apathy, maybe anxiety. Agitation, paranoia. My mom is apathetic to life. She's like.
[00:09:26] She admits that she's very depressed, and my mom vacillates between depressed and super anxious. She'll be just struggling for one moment, and then she's anxious and like, okay, can we just move on? I don't like the situation that we're in.
[00:09:43] That rapid change is a Lewy body thing.
[00:09:47] And another one is changes in autonomic body functions like blood pressure control, temperature regulation, bladder and bowel function. This is where they go. Incontinent. My mom is always cold. I talked to her this morning, and she said, I am just freezing. And she was curled up in a coat and a blanket and socks on the couch, just huddled in place, trying to get warmer. My mom says that she's always cold, and I encourage her to turn up the temperature in the house, but she turns the temperature up one degree from 73 to 74. And then she says it's too hot in the house. So she just really struggles with that temperature regulation. So those are some of the most common symptoms of Lewy body.
[00:10:37] The fourth thing they want you to know is that these symptoms are treatable. The symptoms of Lewy body Dementia are treatable. Now, I really want you to hear that. It's unbelievably important for me to make sure that you understand it's just the symptoms. You can treat the hallucinations, you can treat the shakiness, you can treat some of the memory and the clarity, the symptoms. That does not mean that you are curing the disease. It simply means that you are treating the symptoms. The disease is continuing to decline and progress behind the scenes. So you will use medications, you'll treat that. They'll have benefits for movement and behavioral issues and whatnot, but you'll end up increasing those medications because they are declining in the background.
[00:11:31] Number five, early diagnosis of Lewy body is essential. And that's because different medications work for Lewy body than work for Alzheimer's disease or Parkinson's disease. The crazy thing is that some of the drugs that help with Alzheimer's and Parkinson's are actually make things worse for Lewy body. So getting an accurate diagnosis early means that then you can find the right medications that will help, because they are Lewy body specific. So accurate diagnosis and early on is super helpful and beneficial.
[00:12:14] The 6th one is traditional psychotic medication. Antipsychotic medications may be contraindicated for people with lewy body's disease, and that's because it makes things worse.
[00:12:27] This goes back to number five, that the antipsychotics are sometimes prescribed for individuals with Alzheimer's disease and other forms of dementias. But it affects a lowy body brain differently.
[00:12:43] It can actually make things worse. They can increase the symptoms, they can increase the hallucinations. Maybe the hallucinations go from harmless and gentle to more fearful and threatening. You have to make sure that you got a right diagnosis.
[00:13:02] Seven for the lewybodydementiaassociation.org is early recognition. Diagnosis and treatment can improve their quality of life. And I can attest to this. I feel like we got a pretty early diagnosis for my mom.
[00:13:17] And over the last year, her quality of life has been dramatically improved and lengthened because we had that diagnosis, number one, and because we were able to get her the right medications that really helped. When we first put her on those medications, it was like we got six months back. She went from frail and struggling and incapable to be doing things on her own to, oh, I've totally got this. And she was way more clear and she was less forgetful and her hallucinations were totally minimized. That's because we had a good diagnosis early and we got her on the right medications that did not make all of the symptoms worse.
[00:14:03] I'm so grateful for all of them.
[00:14:06] Number eight that they list is that individuals and families with Lewy body dementia should not have to face this alone.
[00:14:15] Lewy body dementia affects everything about your loved one. Their mood, the way they process things, the way they function in life, the way their body actually moves through.
[00:14:32] It is better to find out what your resources are, how you can be supported and helped through this unbelievable diagnosis, because it's not going to get easier, it's just going to get worse.
[00:14:47] Having a care system, having a support system, having a therapist for you and maybe even a counselor therapist for your loved one, getting an occupational therapist into the home so that they can help you know what needs to be moved and what needs to be shifted for the safety of your loved one. If they're open to a physical therapist, then a physical therapist might be able to help them do some exercises that would encourage continuing the muscles and to getting up and out of a chair and how it would be easier if you were using those muscles or exercising them.
[00:15:28] The last two are society wide.
[00:15:35] One is that the physician education is urgently needed and I can attest to this. I cannot tell you how many doctors I have had to educate on my mom's condition.
[00:15:53] That means that at this time, you need to be up on the information, you need to know your loved one and you need to be ready to be an advocate for them because the Physicians are not that educated in it.
[00:16:13] There's so much for them to know and yet this is here. It's the most misdiagnosed dementia from the other diseases. It's like, come on, we need more education for physicians and we need more research. And that's number ten.
[00:16:33] Research is unbelievably important because we still don't have really great ways to know how to help and what to do. Research would help scientists and doctors figure out better early diagnoses and better screening, like questionnaires and biomarkers and neurological whatnot. It would help work on different therapies that would improve it. With further research, Lewy body may ultimately, I don't know. Is it possible that they could literally treat Lewy body dementia and prevent it because we detect it early and we're able to do neuro like brain protective interventions? I don't know.
[00:17:27] There is no test to diagnose Lewy body.
[00:17:34] The way that you get a diagnosis is that you go to the doctor and you might go to a neuropsychiatrist or a neuropsychologist and you might say, hey, I got problems. I want to know. You might ask for neuropsych testing and that neuropsych testing looks at everything and has you answer questionnaires and has your loved ones doing these things and whatnot. And because of that testing, you are able to find out that that's what your loved one has. It's more of a rule out a bunch of things than there is a definite, this is it. At this time, Louie body is most often recognized, like post death in an autopsy because they're like, oh, yeah, there's the protein deposit.
[00:18:18] I'm grateful for the knowledge that I have. I'm grateful for the challenges that I have gone through. I'm grateful that there is enough knowledge out there that I can educate myself and be prepared for the next steps that are coming on. And that is what you also need to do. Maybe your loved one got one diagnosis, but they're actually dealing with something else. Knowing the markers, knowing what different markers mean could be like the biggest boost and boon for you and your loved one.
[00:18:59] Lewy body is a challenge. It's really a challenge because of the way that these protein deposits form.
[00:19:12] They form so randomly in each patient's brain that no two patients are alike.
[00:19:20] They're going to present the cognitive functions, the physical things, the mental processing, different than one another because of the random nature of Louis body.
[00:19:34] Educate yourself. Get yourself a counselor. Maybe get your loved one a counselor. Make sure that you're ready to be an advocate on this, because the doctors, it's like throwing darts at a board. And it is your opportunity to make sure that your loved one is taken care of as best as you possibly can.
[00:19:55] I really hope that you are taking care of yourself. I hope that you are educating yourself. I hope that you are reaching out and building up your net that will help you support yourself and your loved one through this whole thing. Go to the lbda.org website and read up on it. I'm telling you, it's great information and a great way to start finding additional support in your area. Look around for dementia support groups, whether they be at the senior center or in your area or online perhaps. You're very rural and you just need something online. There are support groups and systems out there that you can talk and work through things. So I send you my love. I send you my support and encouragement that you've got this.
[00:20:46] It's scary, overwhelming and frustrating, and you've got this. So do some self care and I'll see you here again next week on Louie body and my hair. Giving.
