Lewy Body Dementia Awareness Rising

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By Frank M. Samson on January 23, 2015

The following is an edited transcription from the Aging Boomers podcast on “Lewy Body Dementia Awareness Rising” with Teepa Snow.

Frank: Welcome to The Aging Boomers. I'm your host Frank Samson. On this show we discuss so many of the issues facing boomers, their parents and what we know of course is an aging population.Without hesitation here, I want to introduce Teepa Snow.Teepa has over, should I say it,Teepa, how many years?

Teepa: Go for it.

Frank: Okay, 33 years of experience in geriatrics, but she also provided care to a variety of family members with dementing illnesses. Additionally, she has served as the education director and lead trainer for the Eastern North Carolina chapter of the Alzheimer's Association.

She has a strong and varied clinical and teaching background. She was with the Occupational Therapist director in the Head Injury Facility, a clinical specialist in geriatrics at the VA Medical Center and has worked as a restorative care coordinator for long-term care facilities, as well as providing direct care in community, home health, long-term care, assisted living, and rehabilitation settings and teaching community, college, university, and post-graduate programs.

Teepa is a Fellow of the American Occupational Therapy Association. She has developed multiple training videos, published many articles and presents all across the continent in a variety of topics to a wide variety of audiences. We actually caught Teepa in her hometown, which is very unusual because over the past six years she has presented over 350 programs each year.

She has received many awards for her clinical and teaching skills from a variety of organizations and I've personally had the privilege to see Teepa speak, present and she's just one of the best there is as a presenter, teacher and communicator.

So, Teepa it is an honor to have you on The Aging Boomers; thanks for joining us.

Teepa: Well I'm not sure who that woman is you're talking about, but I'm glad to be here.

Frank: There is so much that we can talk about, but we want to zero in on a particular subject. It is a type of dementia called Lewy Body Dementia. A lot of people haven't heard of it.

It is getting a lot more attention and maybe one of the reasons, unfortunately, is Robin Williams’ recent passing. Some people may not know it, but at his autopsy they discovered that he had Lewy Body Dementia, so that brought a lot of raised eyebrows.

So talk to us about Lewy Body Dementia. What is it? The type of dementia people have heard about is Alzheimer's, how is it different from Alzheimer's?

Teepa: What's really interesting, Frank, is that Dr. Lewy was around the same time Dr. Alzheimer was and Dr. Parkinson. They were all very curious men in the early 1900s and Dr. Lewy actually worked with one of Dr. Parkinson's patients. This person was a little bit different. They had some different symptoms, different development and they also died earlier.

Dr. Lewy found that this person had changes all over the cortex of their brain and deep inside their brain, whereas Dr. Parkinson's person started off, and mostly had changes back in the back, in the cerebellar balance area.

You can have a Parkinson's related dementia or Lewy Body, and the parts of your brain that are affected are different and the symptoms are different. It is totally different than Alzheimer's.

Lewy Body Dementia is probably the most missed as a diagnosis and the most misdiagnosed type of dementia that we know about. Latest findings: Somewhere around 20 to 25 percent of everybody who gets dementia may have some Lewy Body involvement.

Now let me describe some of the key symptoms because if you have five of these behavioral symptoms, on autopsy, 90 to 95 percent of the time we'll find out yep, sure enough, you had some Lewy Body. You can have more than one kind of dementia at a time.

The symptoms are:

You have visual hallucinations. You see things that aren't there. They usually involve animals, people, or children, and are worse in the evening and at night than during the day. They can be auditory, but for most people it's visual first.

You have balance and coordination problems. You may actually have unexplained falls, and then you have lots of falls, then the falls stop and go away, so nobody's sure what's going on. Things like walking devices don't seem to help because you fall in all different directions and you frequently can get hurt or you might just find yourself sitting on the ground; you’re not quite sure what happened.

Additionally, people have delusional thinking. Their thinking gets funny, so they think things have happened and they think people are doing things. They suspect people. They may even have some paranoia, thinking that family members or caregivers are trying to steal or do bad things, and in fact that's not what's happening. But you can't convince them they're wrong, as they know what they know because their brain is tricking them.

They have trouble with sleep. The sleep problems can actually go ahead and might have been present, some estimate up to 20 to 30 years before the disease start. These are people who have trouble sleeping at night. They have insomnia. It can last days on end and then they may sleep for long periods of time.

They're hypersensitive to a lot of medications and may have unusual reactions to medications that most people can take without a problem.
Additionally, they may have trouble using their fingers or hands, but unlike Parkinson's, where at rest you have a tremor, these folks don't have a shake or a tremor at rest, it's when they go to do something. They're awkward, they feel sick, they're frustrated and sometimes they can't chew, they can't swallow, they feel like they're going to choke, "I can't take those pills" and so they have fine motor skill problems and then they go away.

Those are some of the features, and so because both physicians and lay people are not so familiar with this, they tend to think it's a psychiatric illness or it's Parkinson's with some odd features, but that's actually not true; it's very different.

Frank: Is it treated differently than Alzheimer's or other types of dementia?

Teepa: Yeah, we have to be very careful in our treatment because of the medication issues and because of some of the symptoms, it most frequently gets misidentified as a psychiatric illness and the psychiatric illness it may be treated as is schizophrenia.

Now the medications we use to treat schizophrenia, for some people who have Lewy Body, it could be deadly. Fifty-percent of people, if they get an anti-psychotic, it keeps [them] from having hallucinations, it’s designed to help you not have hallucinations, and to calm you down.

Unfortunately, anti-psychotic medication can affect someone’s movement system with Lewy Body Dementia (LBD) to such of an extent that it actually paralyzes you. It makes you unable to move and for some people they don't recover, and because physicians aren't used to LBD and aren't looking for LBD, and it happens in younger people also. So you may be in your 40s or your 50s, people don't suspect LBD, and they think something else is going on.

Then Parkinson's gets identified and when you treat Parkinson's you get medicines to treat movement problems. Unfortunately, when you get those medicines, it makes your hallucinations and delusional thinking more frequently. Those with Lewy Body are frequently caught in a catch 22, and the medicines that we use to manage symptoms of memory problems, and thinking, and recall issues may or may not be helpful.

One recent study said Namenda, or memantine, is helpful. Others find that people become so anxious and distressed that it's not worth the medicine. It's like you're rolling dice everyday and every minute. It's also highly variable, so you can have no symptoms and then full out symptoms an hour later.

Frank: Right.

Teepa: Particularly at night. Night time seems to be the worst for people living with Lewy Body and their family.

Frank: How common do you think it really is? I've read some statistics myself, but I'm sure there're people that go to their doctor and they go to their primary care physician and the primary care physician, who certainly is trying to do the best job they can, may just give a diagnosis of dementia.

Teepa: Exactly, yeah and that is a huge, huge problem because then these folks are thrown into a mix where people think it's them. Well it's not them, it's their dementia, but because nobody's realizing that, what ends up happening is the person can get themselves in real trouble physically, but emotionally it's a huge issue.

Frank: It's a tough one and . . . I mean every dementia is certainly difficult,difficult on the family, difficult for caregivers, but it seems like Lewy Body might even be the toughest?

Teepa: Absolutely one of the worst. I can't emphasize how hard this one is, the variability. I didn't even describe one of the things where I know you and I know your relationship to me. Let's say you're my husband and I recognize that, and then ten minutes later I want to know who you are, what you're doing in my house, get out of here, you look like my husband, but you're not.

It's a symptom where I know you're a person, but you're not the right person because in my mind I'm picturing my husband as a separate person and so I think there's an intruder. I think you’re a dangerous person and I'm very upset. I call the police and then 20 minutes later I absolutely know it's you. You step away, you step out and you come back and I recognize you for yourself. It's devastating for family members who are trying to provide support because it's like, I am right here and it's like not you, the other one. It's like oh my heaven.

We see this occasionally with Alzheimer's, but this is like, for many people with Lewy Body, this is a common occurrence and when they get emotionally upset, it's even worse. It's a tough one. It's really hard.

Frank: Yeah, I would think from a caregiver standpoint . . . it’s tough for a family member who’s not trained to take care of somebody with that type of diagnosis.

Teepa: It's almost impossible. It wears people out. It wears them down. It fractures and breaks families. Let’s say I call you and say, "Daddy's stealing my money and he's having an affair with the lady next door" and that's like, "Mom, no he isn't", "Yes he is too," and then you're afraid, "Well is it true, is it not true?" So families struggle with this.

The other thing I didn't mention is they tend to be hypersensitive to sounds, to movement, to activity, so it's hard for people with Lewy Body to be in very busy active settings, which means being around a lot of people, being in a common area where there's lots going on; living life like they used to isn't so possible.

Frank: Yeah, we talked before just about getting a proper diagnosis, that it might be challenging going to a primary doctor, so what do you suggest people do in order to get the right diagnosis, and for managing those symptoms, and treatment?

Teepa: One of things to do if you're concerned and you're also concerned that getting to a specialist is a challenge because your primary care physician makes the recommendation, I would seriously recommend you think about videotaping behavior and interactions that you're concerned about because when you get to the doctor's office, very frequently the person doesn't show any of the symptoms because their brain is on high alert to perform and they can, and it's during the daytime.
One of the things to keep in mind is, if you really want help, you're going to have to show people the kind of things you guys are experiencing on off minutes. It is really important to document what's going on clearly, and to have a third party, if at all possible, to get the data. and then you want to see a specialist who knows what they are doing.

You want to actually see somebody at a memory assessment clinic. Somebody who maybe is a neurologist or maybe a geriatrician that specializes working with people who have changes in brain function and ability, or you might see a geropsychiatrist, but again we want somebody who is curious and interested in different types of dementia, not just getting a label on somebody and then being finished.

That's really critical that we find partners that are going to work with us because this one is a tricky one.

Frank: When you meet a family member who has a loved one who has been diagnosed with this condition, and they say, "Teepa, what should I do? What suggestions you have?" What do you tell them?

Teepa: Let's sort of go through a few of the symptoms, because what I do is sort of symptom-specific for the situation.

Let's say we are having trouble with nighttime wakefulness. What I'd say is, "You may want to get somebody to stay up with them at night; you get some sleep because if you get sleep deprived too, it's going to be a mess."

We actually aren't going to be able to get them to go to sleep. We can try to control visual access to the outside world, so maybe closing curtains, getting things closed down, actually increase the lighting inside because you are not going to get them to go to sleep, you might as well engage them.

See what kind of things you can get them to do. You want to simplify and make it fairly easy and then be prepared during that day. They may start sleeping better during the day because when it's light outside it means that people function better, and that's frustrating, but you can't fix it.

Sleep meds with Lewy Body frequently don't work that well and they often get the person up and walking, but now they are not very alert. There's an increased risk of falls and elopement because they were trying to get somewhere and they're so confused and so turned about.

Or let's say it’s a problem [where] they can't get started, they can't get going, they're sort of stuck and then what we want to do is use a rhythm and say, "Ah,listen come here, could you come help me?" As opposed to, "Lean forward, I need you to stand up," because if you give them instructions they can't follow them, but if you use automatic kinds of phrasing and automatic gestures frequently they can do that, but they can't plan a movement.

You have to be prepared for times you are going to have to help somebody a lot to do things like dressing and undressing, and then other times not. You want to try to use what I call “hand-under-hand” guidance whenever you're doing care, because with Lewy Body because of the heightened sensitivity, they feel like you are hurting them,"Ow, ow, ow, ow," and all you did was try to clean them, or touch them or put a shirt on them, "It's hurting, it's hurting," because they can have that kind of change.

Let’s say the person thinks you’re not the person you are supposed to be. Then step away, call and say, "I'm coming," and then come back and see if they see you for who you are in that moment. It seems silly, but the brain can get tricked that way, which is huge if you are trying to deal with the situation.

Frank: Right, geez. So many of us work together with many of the fine organizations that are raising money, whether it's the Alzheimer's Association; there's a list a mile long of organizations trying to raise money because there's just not enough. So much needs to be done. I see that you've started a campaign.

Teepa: Yeah.

Frank: It's on Kickstarter, which is crowd funding. Maybe you could tell our listeners a little bit about it and how people could participate.

Teepa: I'm on the education board for The National Lewy Body Association. We have great resources, but we need to raise awareness of this condition all over the place and we need folks to realize that once you get your diagnosis it's not over. You're still going to be living life and we need to do a better job helping you do that, and integrate people into society and not try to push them out.

With a group over in England,Shared Syndicate, we're actually working on a little film, that is an artistic film, that looks at some of the struggles and challenges living without diagnosis, alone in society, being a real smart person, but not realizing what you're living with is going to change your entire life. That is one film that we want to do because we want to raise awareness and that's a group that's going to take it to Cannes and all the fancy stuff.

They're also doing a documentary called“How Do You Live and How Do You Live Well?” and we are working with them on that. That's an hour documentary that'll be available to help others understand there is life after the condition and we need to help each other. We need to reach out to families. We need to educate.

Then finally, we're going to do a big launch and our goal is to educate people. To offer more and better education, and so we would like to do scholarships to allow people to learn as they need online, in person, and that's it.

The film is called, “Where Did You Go?”

It's a film, it's a documentary and a campaign on dementia and we're looking for folks to help us out, step forward, and sort of reach out and make this a public issue, because it is.

Frank: Primarily, people that contribute to the Kickstarter program, there are a number of benefits that the dollars would go to, but primarily to get this movie off the ground and to get more and more people to see this film, is that correct?

Teepa: That is correct. I mean that's what we want. We want to raise the level of awareness about this particular condition called Lewy Body because it's so poorly understood and yet we know that somewhere around 20 to 25% of everybody with dementia has some Lewy Body and let's talk about it.

Then, “I'm Still Here,” is a way of looking at everybody living with dementia and those who are trying to support them, and recognize we have work to do. If I were to get dementia tomorrow and have to live with it, I would want the world to be a better place than it is right now for people living with the condition.

Frank: Just so people know how to get the information on this program and if they want to contribute something to it, how do they go about doing that?

Teepa: If you go to Kickstarter and the title of it is “Where Did You Go” by Shared Syndicate, and if you pull it up, you'll see everything. You'll get to see a clip of the video they are working on. You'll get to see a piece of the documentary action that we've done and there is also a Share Your Story, which is a Twitter option to actually get some pictures and some support out there.

We actually got some artwork done by a person who’s living with Lewy Body Dementia to share on there as well.

Frank: That's on Twitter. It's #shareyourstory, correct?

Teepa: That is correct.

Frank: I think I saw that on your website, which is teepasnow.com. You could also get to that Kickstarter program right? You have links going directly there if they want to do that, as well as get a lot of other information that you and your team have put together.

Check out Teepa's website, teepasnow.com.

Where else do you think people can learn more about this disease?

Teepa: Well, I think if you are living with this either as a family member or a person with dementia, there are some really good Facebook pages where people are posting. They're sharing information, so I would recommend going on Facebook and checking things out.

One of the ones that I find very helpful is called Forget Me Not, Lewy Body Dementia, and it's organized and run by people who are very familiar and actually are living with the condition, and they have done some great work at pulling in information.

One of the gentleman, very active, is a pharmacist. He's now living with Lewy Body. Nurses, physicians, I mean people get Lewy Body who have lived life richly and they're still trying to figure out how to contribute, and it's a great resource.

Frank: Teepa, we have another minute or so. I'd love for you to just kind of talk a little bit more about what you do, and your organization does, and how people can learn a little bit more about that.

Teepa: Positive Approach is a way of looking at living life once you have a disease that's changing your brain whether it's Lewy Body, Alzheimer's, or even brain injury. We need to change how we go about trying to help folks because all we do is get frustrated and irritated if we try to fix what's not fixable.

Learning how to let go what you can't have and change so that you can really have moments of joy and what's possible. The techniques we teach and how I go about helping sharing information with people, a lot of what I do is available online at no cost and then we do in depth training, in-depth opportunities, because we want people to become competent, to become skilled, to help change life because who knows it might be [me] next time and I want people to know what they're doing.

I want everybody to live life well, not to feel like I don't know what to do and it's stressing me out because all that does is increase somebody else's risk of getting something called dementia.

Frank: Well Teepa thank you so much for joining us. Go to her website. Do you have a schedule of kind of where you are going to be doing speaking engagements on your site?

Teepa: We do. We have that available on site. We also have a lot of free YouTube and new clips. We had a lot of new things we just added on and we have a map, lots of information and just like you find our primary focus is trying to help people figure out how to keep going and how to have life worth living.

Frank: If you haven't seen Teepa speak, and if she comes in your area, just do it. I promise you, it will be something you'll never forget, and then you're going to be telling all your friends and family to go see her as well.

At the very least, take a look at her videos if you can't get to see her.

Again, Teepa thank you so much. Go on to Kickstarter, learn more about her program or go to her website. You could also #shareyourstory on Twitter.

Teepa thanks so much. Look forward to having you again on in the future and just a pleasure to have you on.

Teepa: Absolutely, I greatly appreciate it and thanks for everything you are doing to reach out to folks. I love the expanded reach. Nice work.