The Many Faces of LBD, Revisited

Since we published this blog two years ago, all that has changed is some research that verifies what we said in the first place! However, many new readers likely haven't seen it and so here it is with updates.

Some say that if you put Alzheimer’s disease (AD), Parkinson’s disease (PD) and schizophrenia in a bag and shake them up, you’ll get Lewy body dementia (LBD). But that’s not all; add sleeping disorders and autonomic nervous system dysfunctions and you’ll be closer to describing this multifaceted disorder. However, today we’ll only talk about the first three and save the others for later.

LBD is similar to Alzheimer's, in that it is a loss of cognitive abilities. However, AD folks tend to lose memory skills first. They forget words and things. LBD folks lose executive skills first. They become unable to think, do sequential tasks, plan, or make decisions, judgments or choices. Even more important, LBD folks may have severe drug sensitivities to drugs that Alzheimers folks can usually take with comparative safety.

Concern: These two dementias often occur together. Since AD is most common, someone with both disorders will most likely be diagnosed first with Alzheimers. Thus LBD’s severe drug sensitivities may not be discovered until the damage is done.

Update: This is still true. Many family practitioners especially, view all dementias as very similar and see little need to burden their patients with the time, effort and money involved with a referral to a specialist. Insist on seeing a neurologist who specializes in dementia or a geriatric psychiatrist.

LBD is related to Parkinson's. There are two types of LBD. Like PD, both are caused by Lewy bodies in the brain. When dementia starts first, this is called Dementia with Lewy bodies (DLB). They may never have major mobility problems and are the ones most likely to be diagnosed with Alzheimer’s disease. People who develop PD first and then go on to develop dementia symptoms are said to have Parkinson’s disease with dementia (PDD).

Concern: Drugs that improve mobility decrease cognition. When a person has PD, they usually see a movement specialist who may view the dementia as an unavoidable symptom of advanced Parkinsons rather than a possible side effect of the PD drugs. When given a choice, caregivers will almost always chose cognition over mobility for their loved ones, even when it means more work for them. They may not get this choice with a movement specialist.

Update: PD specialists are much more aware of the dementia and drug sensitive issues than they were two years ago. For one thing new research is showing that mild cognitive impairment is actually present at PD diagnosis 25% of the time. Identifying this makes the need family oriented preventative care all the more important. Avoiding Lewy-dangerous drugs, managing stress and living a generally healthy lifestyle can greatly extend the time before dementia.

LBD is sometimes compared to schizophrenia because perceptual dysfunctions like hallucinations and delusions are so common and because they tend to very start early in the disease process. In fact they may be the first dementia symptoms, although they are seldom recognized as such until other more cognitive symptoms such as the loss of executive skills appear. One big difference is that people with schizophrenia often hear voices telling them what to do, while LBD hallucinations almost never include voices at all.

Concern: When acting-out behaviors start before more recognizable dementia symptoms, people may see a psychiatrist first. The behavior management drugs most used by psychiatrists are those most dangerous to LBD folks. Even one dose may cause serious, permanent motor or cognitive problems.

Update: Clinicians have now formally identified a type of LBD that starts with behavioral problems like hallucinations and delusions. Families with someone who begins to show such symptoms in their 50s or later should consider LBD even if no other symptoms are present.

The bottom line is that when any of the above symptoms are present, everyone involved should be aware that LBD could also be present, no matter what a person’s diagnosis. If you are wrong, no harm is done. If you are right, you may avoid the damage that can come with LBD’s drug sensitivities. You may also be able to identify “inappropriate behavior” that is alienating co-workers, family and friends as possible early LBD related acting-out behavior. Naturally, you should share your observations and concerns with your loved one’s physician and if appropriate, ask for a referral to a dementia specialist.

Update: The bottom line hasn’t changed.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.

Chairs, Getting Out and Staying In

Getting Out. A person with a Lewy body disorder (PwLB), either Parkinsons or some form of LBD, may lose their ability to lift themselves out of a chair. This loss of mobility or of knowing how to perform the task, is part of the disorder. At first all that is needed is a little assist. Then it gradually gets more difficult and eventually the caregiver must do most of the work. A major problem is that in trying to help, your loved one does just the opposite, leaning  back and stiffening up instead of leaning forward. Here are some suggestions. You can buy the gait belt, shelf paper and chair wedge from Amazon via the LBD Book Corner.

Use a pillowcase. The job of helping a PwLB stand is easier if he scoots forward in the chair first. However, many people have difficulty doing this. Some just don’t have the strength. Others misinterpret the directions do the leaning back and stiffening up thing. Try putting a pillowcase under in the chair before your loved one sits down. Then, standing at the side of his chair, reach across your loved one’s lap, grab the pillowcase and pull forward. This will slide him forward on that side. Then go to the other side and repeat the process. You may have to do this a couple of times to get him far enough forward.

Use a soft gait belt with handles. You should never try to lift anyone from a chair by grabbing under their arms and pulling up. This puts too much strain on your back and damage the liftee’s shoulder and underarm. Instead, use a gait, or transfer, belt. This belt, fastened around your loved one’s middle provides support for them while giving you a place to pull up safely. However, these belts can be uncomfortable and the PwLB may resist wearing one. Soft gait belts are more comfortable. They also have handles that are easier to use than just the belt.

Use automatic gestures. If you ask your loved one to lean forward and he does the opposite, its his mind sending out the wrong directions to his muscles. Change tactics. Instead of telling him, “OK, lean forward and I’ll help you out of the chair,” stand up straight, reach out one hand as though you are going to shake hands with him, and say, “Come on, let’s go.” He’ll automatically lean forward and reach for your hand. Grab it, and use the movement he’s started to help him stand. The reason this works is because it is automatic. He doesn’t have to think about it. We have been trained since we were small to reach out and take a person’s hand when they offer it. When thinking gets muddy, automatic actions often work much better.

Use the right furniture. Make sure chairs are high enough to get out of easily and have firm armrests. Situate the chair in a place where you can stand at either side and don’t have to lift from the front.

Take care of your back. Second only to caregiver stress, back injuries are a major risk of caregiving. When lifting, always stand with your knees bent and your feet shoulder-width apart. Use the muscles in your legs to lift, not the ones in your back. Stand to one side and use your body as a fulcrum so that and let your loved one do as much of the lifting as he can. Work with a physical therapist to learn the best way to lift your loved one. There are basics techniques but each person is different.

Go slow. This is always important but it is especially important if the people trying to lift your loved one aren’t well known to him. Going at normal speed, let alone fast, may feel like an attack. In such a case, it is natural to stiffen up and try to cling to the chair. Ask the staff to take their time and tell your loved one what they plan to do. Visiting and joking with him a bit helps as well. Family caregivers may have to educate the staff about the best way to do this for their loved one. You may feel that you are paying for them to know this—and you are. However, it is better to teach them and then know that your loved one is getting the care he needs in the gentlest possible way than to refuse to help and see him frightened and resistant.

Staying In. Sometimes the problem is that your loved one slips out of the chair. Tying them in isn’t necessarily safe, for the restraints can actually strangle a person if they slip too far. Here are a couple of suggestions from other caregivers. The down side to both of these suggestions is that you won’t be able to use either of these methods for staying in place AND the pillowslip for lifting. It’s one or the other!

Us e shelf liner: Find some rubberize shelf liner, cut a square and place it in the seat of the chair. This liner is used to keep things from sliding in motorhomes and it will keep your loved one from sliding too.

Use a foam wedge: Buy a firm foam wedge about 2-3” on the high side. Place in the chair with the high side at the front. This extra height may keep your loved one from slipping down.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.

Speaking about Taking Charge, Moving On and Enjoying Life

We had the honor of being invited to speak at Global Community Conference on Parkinson’s Disease: Beyond the Limits conference in Keystone, CO earlier this month. They had the usual keynote addresses and breakout sessions. The sessions fell under several headings. For example, Beyond Today was about research. Since the conference was being held in conjunction with a Keystone Dual Conference for Parkinson’s and Alzheimer’s, we had the benefit presentations from some of the world’s most renown researchers. In later blogs, we will discuss some of the research we learned about for it applies to LBD as well as PD.

Beyond the Pill was about non-medical treatment and Beyond the Worry was all about caregiving. In past blogs, we have already discussed non-medical treatment and I’m sure we’ll do more of that for it is the direction we see ourselves going in the next year. Sadly, the sessions about non-medical treatment we’d most like to have seen were at the same time as ours and so we didn’t learn a lot about that, at least not there.

We were in the series called Beyond the Tremors, i.e., non-motor symptoms. Besides ours, there were several other session on cognition, some taught by the above scientists. Addressing cognition so directly is a change for PD groups. They have traditionally avoided this subject or else, treated dementia as a symptom that PwPD occasionally developed towards the end of their lives.

However, we found that the old resistance of the PD community to see itself as a part of the Lewy body continuum was still there…a little less strong but still alive and well. Many had never heard of Lewy bodies, and if they had, were not aware that they caused PD as well as LBD. Of those who did know about Lewy bodies, fear was often present. One man who came to hear us put it this way, “I was afraid to attend your session. I was afraid you’d paint a dramatic picture of doom and gloom.” Another woman said, “When the doctor told me I had LBD, I felt I’d been given a life sentence.” We didn’t talk about doom and gloom or life sentences. We talked about hope and about taking charge, about a person’s power to slow down the disorder’s progress and increase one’s quality of life. The man who'd been afraid to come told us later, "I'm glad I came. It wasn't what I feared. Instead it was positive and helpful."

Yes, PD is a progressive disease that can and often does limit one’s thinking ability as well as one’s mobility. It is so easy to feel that the disorder has taken over and that neither the PwPD nor the caregiver is any longer in charge—to feel as though they are locked in a driverless train to death or worse, insanity. It’s scary, to say the least. We were there at that conference to tell families that they don’t have to feel so hopeless and helpless; that there are many things, from living a healthy, low-stress lifestyle to avoiding Lewy dangerous drugs, they can do. We talked about knowledge being power. The power, for instance to know which drugs are Lewy-safe and which may not be. You can’t stop that train, but you can slow it down so that you can enjoy the scenery and even the journey.

Our goal is to teach PD and LBD families not to let the disorder to take over but to “live until you die.” To take charge, move on and enjoy the life you have.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.
Parkinson’s disease

LBD and Communication 3: Methods of Communication

Past blogs have discussed the many communication difficulties a Lewy partner (the person with a Lewy body disorder) faces. As verbal communication becomes less effective, other types of communication take over. We sometimes forget that we use a variety of ways to get our messages across. Most of us think of communication as being mostly verbal. However, as the ability to communicate verbally decreases, other methods become more important.

A few weeks ago Kevin started yelling and trying to fight me. I couldn’t understand why he was so angry. He’s usually so mild-mannered and sweet. I didn’t know what to do, but I remembered that stress can mess with communication. I thought that if Kevin was this angry, then something very serious was going on with him. I thought it might be delusions. I’d heard a lot about how they can make a person act out. But he wasn’t making accusations. It was more like he was trying to fight me off. –Sarah

Although the message may be garbled and inaccurate, something was likely stressing Kevin. Some of his intensity might have come from the frustration that he wasn’t able to communicate well enough for Sarah to understand him. However, Kevin could also be just as angry over a small irritant as over a very painful one.

Kevin has a history of ulcers and so I asked him if his stomach hurt. He became very excited and tried to hit me. I almost called 911. This was getting dangerous. Then I remembered reading that sometimes touch will work when words won’t. And so I gently touched his stomach and asked him if it hurt there. He collapsed into a chair and nodded. I gave him some mild pain medication and he quieted down. In fact, he went to sleep. I called the doctor and got an emergency appointment for the same day. Kevin is now on medication for ulcers. –Sarah

Intensity, words, touch, tone of voice, body language and facial expressions all convey messages. Recognizing Kevin’s angry behavior as communication, Sarah tried to understand what his behavior meant. Before resorting to a medical solution, she thought it through and checked her conclusions by using touch instead of words.

Intensity. This reflects the amount of tension involved. The mode of communication may change but the intensity of the message may remain. It affects expressions, actions and voice tone. A low softly voiced “I love you” accompanied by a gentle touch and a loud “I love you” accompanied by a frown have totally different meanings. As a general rule, the louder, more energetic or negative an interaction, the more stress it suggests.

Intensity is not a constant for the Lewy partner. Without an ability to judge the severity, a Lewy partner either hurts or he doesn’t. He is either scared or he isn’t He is either angry or he isn’t. Although he will usually respond better to a low intensity communication, he may not be able to adjust his own intensity appropriately.

Verbal communication. Lewy symptoms impair verbal skills more than any other type of communication. Words are symbols we use to express our feelings and thoughts. We hear words and use our past knowledge to interpret what they mean. We respond internally with a feeling or thought, interpret that feeling into words, and reply.

When LBD damages a person’s thinking abilities, the interpretation steps often get missed or garbled. Words become either misunderstood or unavailable. Then when muscle problems make talking harder to do and understand, many Lewy partners choose to talk very little.

Next week’s blog will be about communicating via the senses.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.

LBD and Communication 2: Problems Not Related To Language

A couple of weeks ago, the blog was about language-related problems for the Lewy partner (the person with a Lewy body disorder). Communication is a huge issue for the Lewy partner. Without good verbal skills, they often find it difficult to be understood. This week is about some of the Lewy-related problems with communication that aren’t directly connected to language.

Thinking errors. Lewy causes a variety of thinking errors. Some result in delusions as described previous blogs. Others are less obvious.

I had to be careful how I told Quentin to do something. He’d go when I said, “Don’t go…” or sit when I said, “Don’t sit.” I guess he didn’t hear the negatives. –Beth

The subconscious brain, even when healthy, tends to ignore the negative prefix to a directive—hypnotists learn that “sit” and “don’t sit” often generate the same sitting response. It is the thinking part of our brain that recognizes the negative prefix. Quentin’s weakened ability to discriminate caused him to ignore the negative parts of Beth’s directives and do the opposite of what she wanted him to do.

Muscle rigidity. Quentin may actually hear what Beth wants but his body isn't complying.

Sometimes I'll tell Quentin to lean forward and stand up. Instead he pushes back and appears to resist me.   --Beth 
Lewy bodies can cause muscles to become rigid, so that when requested to do something, a Lewy partner appears to be resisting. This is unconscious. In fact, the more the person tries to follow directions, the more rigid the muscles will get. This is also temporary, so that once the pressure is off, Quentin may do the same thing easily, as though he had simply been being difficult or contrary.

Slow thought processing. As Lewy advances, thinking gets bogged down more and more. The Lewy partner processes everything very slowly—for others, that is. For them, their mind is racing a mile a minute trying to wade through everything that’s going on. It’s like your car when it is in mud and the motor is racing but you are hardly moving.

One evening, before we knew there was anything wrong with Bill, we took my dad out to dinner. I asked Bill if I could have his butter if he didn’t want it. He ignored me, and just sat there looking at his plate. I’m easygoing and so I didn’t push; I just went on eating and visiting with my dad. Five minutes later, Bill picked up his butter and put it on my plate. Years later, after his diagnosis, I remembered that and understood that he’d been processing my question that whole time. –Marla

Marla asked a compound question; one with more than a single idea to be processed: a) Did he want it and b) Could she have it. Such questions take more time to process because each component must be considered individually. Also, Marla’s conversation with her father may have been distracting, making processing the request harder. Bill would likely have had to start over if Marla had repeated her request or asked if he had heard her.

Attention deficit. A Lewy partner gradually gets to where they cannot focus on more than one two things at a time.

I get agitated when someone tries to talk to me when there is loud music in the background. I am also beginning to notice that I hate it when there’s more than one person with me in a conversation. And don’t go talking about too many things at once. –Joel

Joel’s brain can handle only a limited amount of input at any one time. It works hard to process that. Any more just doesn’t compute.

Light sensitivity. Lewy partners aren’t just sensitive to drugs. They are often also sensitive to light. They may frown or squint. They may also simply close their eyes and appear to be bored or asleep.

LBD is not necessarily the only thing causing communication problems. If you suspect that the Lewy partner has any of these or some other similar problem, have them checked.

Poor hearing can decrease and/or distort the sound of voices, making them difficult to understand. Even a healthy person can become isolated by deafness.

Poor vision can hide and/or distort visual information. Add LBD’s visual problems such as hallucinations and partial blindness can be very distracting.

Depression and apathy may make the effort to communicate seem too much to deal with.

Pain, infections and other illnesses will take priority and remove focus away from communication. They also add stress which increases any LBD symptoms already present.
Next week, the blog will discuss the non-verbal ways that a Lewy partner communicates. And the week after that, we will finally get down to how to use this knowledge to communicate better with our loved ones. Better communication goes a long ways towards decreasing stress and the accompanying Lewy symptoms.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.

LBD and Communication 1: Language-Related Symptoms

The symptoms that affect communication are seldom obvious at first. They show up slowly, insidiously moving in and gradually changing the way a Lewy team communicates. At first, most problems occur during times of stress. Thus, when the Lewy partner (the person with the Lewy disorder) most needs to communicate well will be when it is hardest to do.

Language difficulties and weak facial muscles may make verbal communication frustrating and sometimes so exhausting that it isn’t worth the effort. The symptoms are not always obvious. Slowing thought processes, growing attention deficits and apathy may be seen as boredom. Light sensitivities show up as sleepiness. Misinterpretations and inappropriate responses due to failed thinking filters become identified as character defects.

Word recall difficulty. We all have this “it’s on the tip of my tongue” experience at times, but it can be one of the first symptoms of LBD. People often have a feeling they know the first letter of the word or even how many syllables it has, but the word just isn’t there.

We loved to go on picnics as a family. My dad and I still do, although we usually just stay home and eat in the backyard. Recently Dad suggested, “Let’s go on a, uh…Let’s take our food outside and eat on that table out there.” “Oh,” I said. “You want to go out back and eat on the picnic table?” Dad responded, “Yeah, let’s sit at the picnic table.” --Deborah

Deborah’s dad knew he didn’t have the right word and was able to talk around it to get his message across. Once he heard the word, he could use it with understanding.
Word substitution. Sometimes people use the wrong word and don’t even realize it.

We used to laugh when Quentin said green when he meant blue or things like that. Sometimes it wasn’t so funny. He once asked me for a chair and was mad when I brought him one. He’d wanted a step-stool. That was even before we knew he had MCI. –Beth

Quentin didn’t recognize he’d used the wrong word. Usually, the substituted word or phrase will be similar in some way to the intended word. It might:

• Have a similar function or meaning: chair vs. step-stool.
• Be in the same group: green vs. blue.
• Start with the same letter, or sound: computer vs. counter.
• Rhyme: washing fishes vs. washing dishes.

It may not have any apparent connection at all. The further into the LB journey a person is—or the more stressed—the more garbled the words are likely to be.

Weakened facial muscles. Even when Parkinson’s is not involved, Lewy tends to weaken the muscles around the face and throat. At first, it tends to attack and weaken those muscles that control the voice.

Quentin’s voice got so soft I could hardly hear him but when I asked him to speak up he’d tell me he was already shouting. –Beth

Quentin was making the effort to speak loudly; it just wasn’t coming out that way. Beth may also be hard of hearing--a common problem with aging caregivers. That makes Quentin's efforts even more ineffective.

As these symptoms add up, a person will become less able to communicate verbally and start communicating with their behavior—which we all do anyway, far more than we realize.

Next week, the blog will be about Lewy-related communication roadblocks other than language.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.

LBD and Stress, Part 5: Changing the Body's Response

This blog is for the person with early LBD although the information works for anyone. The brain is a wonderful organ that can calm with soothing messages almost as easily as it excites with danger messages. The “almost” is because it does take a little more effort at first. Sending these calming messages isn’t as instinctual as the flight and fight reaction that leads to so much stress. However, with practice it can become second nature. The following ideas don’t take any training although they do improve with use. Practice them daily:

Use compassion. This is usually easier with others than it is with oneself. When you feel overwhelmed, ease back on your standards, slow down, and treat yourself gently.

A friend asked me to review her writing. I was glad to oblige. I’ve done a lot of proofreading in the past and I’ve always enjoyed doing it. But not this time. When there was more than a single comma in a sentence, I’d find myself going back and re-reading it over and over. I couldn’t seem to get past those commas! I called my friend and told her she’d have to find someone else. This was too stressful for me. –Jan

Jan is beginning to notice some early LBD symptoms. Commas separate thoughts or ideas. Several in a single sentence triggered her budding LBD and stopped her reading. Jan knows the importance of managing stress and so she didn’t punish herself by trying to continue to do something that had become too frustrating. She gave herself credit for trying and moved on. If you begin to feel you’ve failed, be as generous with yourself as you would be with a loved one.

Use positive thoughts. Negative messages increase anxiety and keep the ANS sending out those danger signals. Rephrase to make your experience positive. For example a problem is a challenge—something to make life more interesting. Instead of thinking, “I can’t do that anymore” tell yourself, “It won’t hurt to try.” Trying and not succeeding isn’t failure; it’s a learning experience. When you take longer to do something than in the past, don’t consider yourself too slow. Think instead, think “I have plenty of time.”

Remove negatives like can’t, from your vocabulary. Like Jan, you may find some tasks that used to be easy are now frustrating. Instead of telling yourself, “I can’t do that anymore” think, “I’m taking care of myself by eliminating unnecessary frustration.”

Listen to music. Soft, easy listening music is relaxing for most people. Our bodies will slow down or speed up to match the music. It is also a part of many stress management exercises. Be careful not to let it be distracting however.

Exercise. Besides including regular exercise in your schedule, add a little more when you feel uptight. There is a strong connection between exercise of any kind and stress reduction. It increases your feel-good endorphins, improves your mood, distracts you and becomes “meditation in motion.”

Do deep breathing. Stop whatever you are doing and take some deep breaths immediately when you begin to feel stressed. Taking slow deep breaths increases oxygen and adds to your reserves. This slows a racing brain and helps you think more clearly. You can do deep breathing anywhere, anytime. However, regular practice is also important so that when you need it, you can do it correctly. Be careful not to hyperventilate by exhaling more air than inhaled. This results in dizziness and adds to the problem instead of reducing it.

A Caregiver's Guide to Lewy Body Dementia is a resource book for all LBD caregivers. Go to The LBD Book Corner in LBDtools.com  to buy the book from Amazon. The small fee they pay us helps to support our work.

Dementia's Three Fears

Three things high on the list that many people at risk for dementia fear are losing their driver’s license, losing the ability to handle their own finances and placement in a nursing home. At the center of these is losing one’s independence and the feeling of no longer being in control of one’s life. These fears are all valid. Dementia does increase a person’s dependence on others. It can take away the ability to drive safely if at all while removing the ability to comprehend the dangers involved. It can take away the ability to make sound decisions while increasing impulsivity so that unsound, sometimes disastrous actions occur before someone intervenes. It can make residential placement necessary, while removing the ability to understand why.

How can you avoid these catastrophes? How can you make the transitions to dependence less painful? The answer is that sometimes you can’t. And especially you can’t if you aren’t aware that there’s a problem—or if you resist the idea even in the present of obvious warning signs. Dementia can sneak up on families and do its damage before anyone acknowledges there is a problem at all. We all want to think our loved ones—and ourselves as well--will maintain reasonably good cognitive functioning well into old age. It’s easy to see LBD’s “good days” and “showtime” as the norm and make excuses for the confusion of its “bad days.” It’s easy to overlook the warning signs as the mistakes “anyone makes once in a while.”

But the price for that is losing the chance to prepare, to make plans while the person at risk still can have input. Without that input, later decisions will be harder for the caregiver to make and for the loved one to accept. Without recognition of what the future might bring, caregivers make promises they can’t keep and their loved one feels blindsided.

Some people deal with warnings of dementia by denying it. They insist that nothing is the matter and therefore, no changes need to be discussed. Some face the possibility of dementia head on and look for ways to fight it, even to cure it. Neither of these extremes works well. The first fails because we can only deal with problems we admit are present. The second fails because we can’t fight an incurable disorder like dementia. We have to accept it and then flow with it, adapting to maintain functioning as long as possible.

Prepare for what might happen in the future--the earlier, the better. Caregiver, loved one and anyone else who needs to be should be involved. Have conversations what the red flags are for unsafe driving and financial decisions or that home care has become unsafe—and what to do once they appear. How can a person give up their driver’s license with dignity? Who should be in charge of financial, legal and medical decisions if needed? What alternatives to home care are best?

These decisions made and documented well ahead of time allows the caregiver to know how to proceed and enables their loved one to accept the necessary changes more easily. They may not like the changes, but they will feel some ownership of them. This is true even if they no longer remember the discussion. It is still there somewhere in their subconscious. Over and over, caregivers have supported this with their stories.

Fall Book Reviews

Time to do a few book reviews. Just click on the book cover for those that we recommend and you can go right to Amazon to order them. They are also available in the LBD Book Corner along with many other LBD-related books on our website. Please know that we receive a small fee for anything you order from Amazon via our blog or website. It all goes towards maintaining our work.


Confidence to Care: A Resource for Family Caregivers Providing Alzheimer's Disease or Other Dementias Care at Home by Molly Carpenter. $10.68. Published by Home Instead, this book is an example of that company has continually supported good caregiving and the family caregiver. It provides many suggestions for dealing dementia symptoms including behavioral ones like delusions. It’s one detraction is that it is short: 40 of the 160 pages were left blank to be used as a journal. While we consider journaling a necessity, we wouldn't recommend that you do it in another book! However, its price is also low, especially for a reference book. Also available in Kindle, but we don't recommend buying reference books in Kindle form. You want to write in the margins and use book mark tabs, etc. in a reference book!

Going Gentle Into That Good Night by Sandra Ross. Kindle, $6.99. Ross tells a heartfelt account of her journey, but we cannot recommend this book. 1) Poor editing detracts from the readability. 2) Where some books are too clinical, this one does not provide enough background information. 3) Worst of all, Ross sees respite for the caregiver “tantamount to abandonment.” We believe that without respite, caregivers can become irritable, ill and unsafe with their charges paying the price. We could overlook the first two but a recommendation against a basic caregiver need is not acceptable.


Fatal Tide (Book 3 of the East Salem Trilogy) by Lis Wiehl and Thomas Nelson. Kindle: $17.44, MP3 CD: $10.79, and Hardcover: $18.36. This is a suspense fiction with a complex plot involving angels and demons. The only reason we post it here is that one of the protagonists (Tommy) has a father (Arnie) with LBD. While LBD doesn’t play a large part in the story, the authors did excellent research and portrayed the symptoms well. Even it's Kindle price is high for a non-reference book, but the writing itself is quite good and if you like this kind of novel, it would be worth looking for in the library.

Dementia with Lewy Bodies and Parkinson's Disease Dementia: Patient, Family, and Clinician Working Together by J. Eric Ahlskog, $31.19. We had great hopes for this book but reviewers don’t support those hopes. They report that it is too clinical and lacks new information. Even more condemning, it advocates the use of drugs almost exclusively and does not give much space to non-drug solutions. With LBD, where drugs can be so damaging, this is enough to recommend against this book, especially considering the high price.

Making the Connection Between Brain and Behavior, Second Edition: Coping with Parkinson's Disease by Joseph Friedman. $15.38. Instead of the above book, we recommend this book that is half the price and provides better information. Although it is directed to the Parkinson’s community, anyone dealing with LBD can also profit from reading it. While Dr. Friedman comes from a movement perspective, he is also a member of the LBDA Scientific Advisory Council. Dr. Friedman adds enough explanations to help a person understand without getting overly clinical and boring. He addresses behavioral symptoms such as hallucinations, anxiety and much more in a compassionate way with many vignettes to help the reader relate.

LBD & Nutrition-6: Coffee and Tea

This is the last of our blogs on nutrition and its effect on LBD. We seldom think of coffee or tea as “nutrition,” yet, they do contain a variety of substances that may be helpful with dementia.

Caffeine is an alkaloid produced by several plants. It is in the coffee most Americans drink every morning. Lesser quantities are also in black tea, colas and chocolate.
Belief: Drinking coffee delays dementia.

• Fact: True, but impractical. Drinking three to five cups of coffee a day may decrease the risk of dementia. Healthy people who drink this much coffee are less likely to progress into MCI, or may not progress as quickly as they otherwise would. Those who already have MCI will not progress into dementia as quickly either.   Reference
• Concern: This much coffee per day may cause other health problems such as increased blood pressure and heartburn. It is a stimulant and when consumed too close to bedtime can interfere with sleep. It is also a diuretic which can interfere with hydration.

Quercetin. (kwer-se-ten) This nutrient is found in apples, onions, blueberries, red grapes, cranberries, green or black tea and red wine.
Belief: Quercetin improves cognition in persons with PD.

• Fact: Not yet proven. This member of the flavinoid family of plant-based compounds has recently been shown to have a cognitive enhancing effect on PD in rats.   Reference.
• Concern: While this report is hopeful, much research is still needed to support the belief that Quercetin is useful for humans.

Green tea is made from the steamed and dried leaves of the Camellia sinesis plant, native to Asia. It is available everywhere tea is sold.
Belief: Drinking green tea lowers the risk of dementia.

• Fact: True. Green tea protects brain cells from toxins and is associated with a significantly lower risk of cognitive impairment.  Make it a part of your daily fluid intake. It contains quercetin, which may be why it is effective against dementia.

Belief: Drinking green tea calms you down and helps you concentrate.

• Fact: True. It contains the amino acid L-theanine, which calms and aids with concentration.   Reference

Belief: Green tea contains some caffeine and is therefore a mild stimulant and diuretic.

• Fact: False. There is a small amount of caffeine in green tea but not enough to counteract the calming qualities of L-theranine. The amount of caffeine is also not enough to make green tea a diuretic. Therefore, it is as good as water for hydration.  Reference.

Bottom line: Green tea is probably a better choice for a healthy beverage than coffee or black tea and caregivers should consider adding it to their loved one's meals. However, a moderate amount of either black tea or coffee is not likely to be particularly harmful, especially if drunk early in the day.

LBD & Nutrition-5: Fatty Acids

We tend to lump all fats together as “bad.” However, we now know that certain types of fats are necessary for good health. Fatty acids, produced when “good” fats are metabolized, perform a multitude of services for the body. They may even improve cognition.

Source:  Fish, especially salmon, or fish oil supplements are best.  A less powerful type is also found in vegetable and plant products such as flax seed, leafy green vegetables, nuts and seeds, broccoli and cauliflower, winter squash and dry beans. Omega-6 is even less helpful. It can be found in plant oils such as corn, soybean and sunflower oil as well as nuts and seeds. It is less helpful but still better than the saturated fats from animals sources.

Belief: Omega fatty acids help with digestion, decrease infections and improve blood pressure, all systems that can be affected by LBD.

• Fact:  True. There is scientific support that these fatty acids help with the digestion of fat-based vitamins, boost the immune system and lower triglycerides, the “bad” fats which can raise the risk of several other diseases, such as diabetes, stroke and heart disease. Reference

Belief: Omega-3 fatty acids combat dementia.

• Fact: Partially true. Scientific studies about this nutrient’s effect on dementia are mixed. Its value in supplements is questionable but its value in food is supported.  Reference

Coconut oil contains a type of fatty acid also found in palm kernel oil. MCT (medium-chain triglyceride) is used extensively in South Asian countries and can be bought from online health food stores. MCT supplements can also be bought separately.

Belief: The ketones produced when coconut oil is metabolized provide an alternate energy to the brain’s cells, thus moderating the damage caused by dementia. Reference

• Fact: Not yet proven. Although there are many personal stories that ingesting coconut oil decreases dementia symptoms, there is no scientific support for this theory. However, coconut oil is a food source for omega-3 fatty acids, and as such, may have some effect, both direct and indirect upon dementia. (See omega-3 fatty acids, above.)
• Concern: It is apparently important to buy non-hydrogenated virgin oil from organic coconuts. This increases the cost. Although MCT is available as a supplement, fatty acid supplements in general have not proven to be very effective.

Food is usually a better source of fatty acids than supplements. Switch from saturated fats like butter to unsaturated ones like margarine and olive oil. Add nuts to your diet by including them in casseroles and vegetables. Have fish once a week or more.

LBD & Nutrition-4: Water-Soluble Vitamins

This week the blog is about something that at first blush doesn't have much to do with dementia of any kind. However, because LBD increases stress and impairs the immune system, these vitamins are useful and should be considered as a daily supplement.  Unlike the fat-soluble supplements discussed last week, these water-soluble vitamins are excreted in the urine. Excess water-soluble vitamins are not stored in the liver nor do they  build up to toxic levels when taken in amounts of more than the body can metabolize at the time. While food is still the best source of these nutrients, supplements can usually be taken safely in normal doses.

Vitamin B Complex (Folic acid, B6 and B12): These vitamins can be found in fish, poultry, meat and dairy sources.

• Belief: These vitamins help to prevent or slow dementia.
• Fact: True, but impractical. These water-soluble vitamins help in the formation of red blood cells and in the maintenance of the central nervous system, and appear to lower the levels of an amino acid associated with dementia. Studies have shown that large doses of these three vitamins together can decrease confusion, reduce depression and slow MCI.   Reference 
• Concern: The large dosage required makes obtaining an adequate amount from food impractical. Therefore supplements must be used. In addition, injections provide better results than oral supplements, making this a difficult and possibly impractical effort for the average person.
• Belief: These vitamins help to reduce stress, which in turn reduces dementia symptoms.
• Fact: True. A daily oral dose of these water-soluble vitamins has been shown to significantly decrease workplace stress, confusion and depression.  It is reasonable to believe that it would also reduce stress in other areas of one’s life as well. Reference.  
• Belief: Taking Vitamin B12 will prevent dementia.
• Fact: False. It has been known for some time that a deficiency in Vitamin B12 decreases the brains ability to metabolize neurotransmitters and can cause dementia. However, taking Vitamin B12 alone as a preventive measure does not help.   Reference.

Vitamin C: This water soluble vitamin is found in most fruits, green leafy vegetables, broccoli, chestnuts, soy beans and low fat yogurt.

• Belief: Taking Vitamin C lowers your risk of dementia.
• Fact: Not yet proven. This vitamin was associated with a lower risk of dementia in one small study. That study needs to be replicated, preferably with a larger number of subjects before it can be accepted as fact. Reference.
• Belief: Vitamin C is helpful in reducing the infections that occur so often with LBD and which in turn, increase LBD symptoms.
• Fact: True. It has long been known that Vitamin C is associated with the maintenance of a healthy immune system, and therefore is helpful in reducing infection.

While taking supplements of these vitamins is comparatively safe, anyone dealing with LBD should always remember that this disorder makes the whole digestion system sluggish and that drug sensitivities can occur at any time. Larger than normal doses are discouraged without a Lewy-savvy physician's supervision.

LBD & Nutrition-3: Antioxidants

Antioxidants are the body's scavengers, they combat free radicals—unstable molecules that can injure healthy cells and tissues. Lewy bodies are generated when healthy proteins are “misfolded” or damaged. It is possible that removing free radicals decreases that damage.

However, this possibly positive result does not come without dangers. Many antioxidants are fat-soluble vitamins which cannot be excreted in the urine. Taken in larger doses than the body can use, the excess is stored and can become toxic, causing liver damage or other problems.

Vitamin A: Found in most fruits and vegetables, some nuts, dairy products, and tuna.

• Belief: Vitamin A prevents free radicals from turning healthy protein cells into Lewy bodies.
• Fact:  Not yet proven. Vitamin A may be helpful with other disorders but there is still no scientific evidence that this vitamin is helpful in preventing dementia.
• Concern: This vitamin is fat-soluble and therefore, dangerous in the large amount of supplements often recommended.

Beta carotene: A vitamin A precursor can be found in most fruits and vegetables, some nuts, dairy products and tuna.

• Belief: As with Vitamin A, beta carotene combats dementia.
• Fact: Not yet proven. One small study found beta carotene levels lower in people with dementia than in those without dementia. This same study also found that a higher intake of this nutrient by healthy people was associated with a lower risk of later dementia.   More research is needed before this belief can truly be supported.
• Concern: Beta carotene is fat-soluble, and therefore can be toxic when taken as supplements in larger than recommended doses.

Vitamin D:  Small amounts can be found in fatty fish such as herring and tuna. It is also added to many dairy products and sold as supplements.

• Belief: Vitamin D is called the Sunshine Vitamin because just a few minutes of sunshine per day will provide adults with all they need.
• Fact: False. This is true for younger people. However as people age, their skins become less efficient, resulting in vitamin D deficiencies.

• Belief: As an antioxidant, vitamin D decreases the risk of dementia.
• Fact: True. Recent research supports this belief.  

• Belief: Vitamin D helps to make strong bones and keep them strong, important for people that are accident-prone, as is the case for many with Lewy body disorders.
• Fact: True. This vitamin promotes calcium absorption and works to keep bones strong.  It also helps to prevent osteoporosis, a common disorder with older women, which can also weaken bones and make them easier to break.
• Concern: Since this vitamin is less easy to find in foods, doctors may recommend a vitamin D supplement. Be careful not to take more of this fat-soluble vitamin than the recommended dose.

Vitamin E: This antioxidant is found in wheat germ, nuts such as almonds and hazelnuts, vegetable oils such as sunflower and safflower oils, and some green vegetables, such as spinach and broccoli.

• Belief: Vitamin E decreases the risk of developing dementia.
• Fact: Partially true. Since we reported on this vitamin in our 2010 book, this vitamin has been found to be helpful for long term prevention and may have a modest impact on the risk of developing dementia later in life.  
• Concern: The above pertains to vitamin E found in food only. The amount of this fat-soluble vitamin needed be effective in supplement form is toxic and can cause liver damage.

Coenzyme Q10 (CoQ10). This antioxidant can be found in organ meat (heart, liver), vegetable oils, fatty fish, and nuts. Broccoli, sweet potatoes and sweet peppers also contain moderate amounts of this nutrient.

• Belief: CoQ10 can slow down dementia.
• Fact: True, but impractical and possibly dangerous. There is some evidence that suggests this coenzyme may slow down but not cure Parkinson’s dementia.
• Concern: The amount per day required for effective treatment is too large to get easily from food. Supplements are generally used but they are expensive.
• Concern: A variety of diseases and drugs can interact negatively with CoQ10. For example, it decreases the effect of blood thinners. Also, it is fat-soluble. Be sure to talk to your doctor before adding this nutrient to your diet.

Next week: Water-soluble vitamins.

References:
Vitamin A: Dietary antioxidants and dementia 
Vitamin D: Vitamin D, cognition, and dementia.
Vitamin E:  Dietary Antioxidants and Long-term Risk of Dementia.
CoQ10: CoQ10 and Dementia.

LBD & Nutrition-2: Supplements in General

A balanced Mediterranean diet supplies most of the nutrition a person needs. A daily vitamin and mineral supplement is usually enough for anything that was missed. Except for that, it is best to use supplements sparingly, if at all. Researches agree that it is best to get needed nutrients directly from the foods for these reasons:

• Effectiveness. Nutrients in food are generally more effective in combating dementia than the same nutrients in supplement form.
• Regulation. Unlike prescription drugs or even OTC drugs, supplements are poorly regulated. There are no laws governing content. You can never be really sure the label is accurate. 
• Danger. Some supplements can be dangerous when taken in large amounts or taken with other drugs. For example, the amount of antioxidants thought to be useful against dementia is often larger than a normal diet would supply. However, supplements in  these large amounts can be toxic to the liver or other organs.
• Expense. Some supplements are both expensive and dangerous to use without a doctor’s guidance. CoQ10 is an antioxidant with the problems noted above. It can also conflict with prescription drugs a person is already taking. And finally, it is quite expensive.

There are only a few safe drugs even moderately useful in combating dementia and these are prohibitively expensive. Perhaps that is why beliefs abound about the benefits of various nutrients thought to improve cognition. Some stem from anecdotal reports, or personal stories. Others are supported with scientific evidence from clinical trials. These are studies with groups of people, some receiving the treatment and some getting placebos. Anecdotal reports do not provide adequate proof of a theory even when there are many such reports. Clinical trials provide better proof but still need to be replicated before their results are fully accepted, unless the studies are large and well-run.

Issue to be discussed more fully in later this blog series on nutrition:

• Antioxidants (anti-ox-i-dunts): These nutrients are thought to combat LBD by  destroying free radicals
• Water-soluble vitamins are fairly safe. The down side is that none of them specifically combat dementia. However, they may help to combat other problems like infection and stress, both of which can make LBD much worse. 
• Omega-3 fatty acids appear to boost the immune system and lower triglycerides or the “bad” fats. However, there’s a lot of confusions about which foods fit in this category. Other similar foods are Omega-6 fatty acids and are not so helpful. 
• Coffee and tea may not be “supplements” but they have also been touted to be helpful with dementia.

Over the next four weeks this blog will all address each of the above subjects in much more detail. If you have comments or questions about any of these, be sure to speak up.

LBD & Nutrition-1: The Mediterranean Diet

Dementia drugs are only moderately effective in combating dementia. Behavior management drugs are actually dangerous with LBD. So what do you do instead? How do you combat this insidious, always encroaching, always progressing disorder? Physical exercise can slow it down—more than drugs, experts say. Staying socially and mentally active helps too. For years, many have insisted that eating a healthy diet also made a difference.

Now, researchers have specifically identified a Mediterranean diet, low in carbohydrates and rich in vegetables, fish and “good” oils as helpful. You may even want to add a little wine. The antioxidants, vitamins, minerals and fiber in these foods work together to protect against chronic disease, including dementia.

Foods in a Mediterranean diet include:

• Most vegetables, fruits, whole grains, nuts beans and a little wine.
• Limited starchy vegetables like corn, potatoes or peas. 
• Proteins sources such as eggs, cheese, yogurt, fish, and a little poultry but very little red meat like beef.
• Unsaturated fats such as extra virgin olive oil or canola oil instead of saturated fats like butter and bacon grease.
• Limited simple carbohydrates such as bread or pasta and sugar. 

Choose foods that are:

Fresh, or quick frozen. These retain their nutritional value best. Quick frozen can actually be better than fresh because they are processed at the most optimum time.

Unprocessed. Processed food will often include substances that are less healthy such as white flour or corn syrup. Labels should show no more than two items besides the food itself. For instance, clam chowder can have two ingredients besides the clams, vegetables and milk.

Raw, steamed or grilled. Boiling removes nutrients and frying adds saturated fats. Baking can also work as long as the oils from the meat drain away from the food.

Eating the above foods prepared in the above manners decreases the risk of getting metabolic syndrome, a cluster of risk factors for all chronic diseases: high blood pressure, high blood sugar, unhealthy cholesterol levels and abdominal fat. Most chronic diseases are risk factors for dementia.

This overview is only an introduction. For more information, find books about a Mediterranean diet and other related issues in the LBD Book Corner store.
There is more to a good diet than food. The following also help to keep dementia at bay:

Provide a relaxing atmosphere. The environment in which the food is eaten is important too. A pleasant, peaceful atmosphere helps to digest the food better. This becomes more important as Lewy advances. Avoid rushing, annoyance or distraction during mealtimes. Stress and distraction interfere with anyone’s ability to digest food. Add LBD’s more sluggish digestive system and its sensitivity to light, sound and feelings and these distractions can make eating very difficult if not actually dangerous.

Eat at the table as a family. Eventually, Lewy symptoms such as swallowing problems or a changed sense of taste, may make eating more of a chore than a pleasure. Therefore, do everything possible to foster a mood of relaxed enjoyment at meals. This includes making mealtime a family affair. Families who eat meals together tend to be more content.

Keep the focus on the food and the conversation. Soft relaxing music can help to set a calm atmosphere. Loud, intrusive or busy music or a television running in the background can be distracting, especially for the Lewy partner who already has attention deficits. Avoid arguments and even mild disagreements. Mild laughter is helpful but too much excitement is distracting.  Lewy can cause feelings of intense excitement to be interpreted as intense fear or anger or other negative feelings.

Nutrition. A balanced Mediterranean diet supplies most of the nutrition a person needs. A daily vitamin and mineral supplement is usually enough for anything that was missed. Except for that, it is best to use supplements sparingly, if at all. Instead, get the needed nutrients directly from the foods. First, nutrients in food are generally more effective in combating dementia than the same nutrients in supplement form. Secondly, unlike prescription drugs or even OTC drugs, supplements are poorly regulated. There are no laws governing content. You can never be really sure the label is accurate. Finally, certain supplements can be dangerous.

That said, the next few weeks will discuss some of the supplements thought to help with dementia. Let us know if there is a certain one you want to know about. We’ll do the research.

Zelman K. (2011) The Mediterranean Diet. WebMD. Edited August 16, 2011. www.webmd.com/food-recipes/guide/the-mediterranean-diet 

LBD and Drugs, Part 7: Dementia Drugs

The PD drugs discussed last week and dementia drugs have conflicting actions. That is, drugs that improve motor function are likely to impair cognitive function. Conversely, drugs that improve cognition are likely to decrease mobility.  In each case, families and physicians have to find a balance of treatment that works for each person. Last week’s blog discussed first half of this balancing act. This blog is about dementia drugs, the other part of this balancing act.

Drugs used to treat the cognitive symptoms of LBD have been used with Alzheimer’s for many years. Research has shown them to be even more effective with LBD. However, due to the slowness of our drug accrediting system, only a few are approved by the FDA for treatment of PDD and none for treatment of DLB. (See the May 17, 2013 blog for the difference/similarity between PDD and DLB.) Lewy-savvy physicians regularly prescribe these drugs to treat LBD. These drugs treat all LBD symptoms, not just cognition. They act in one of two ways:

Acetylcholine preservation:  Aricept, Exelon and Razadyne are all cholinesterase inhibitors (AChEIs). They inhibit a chemical that moves acetylcholine out of the brain cells.  Only Exelon has been approved by the FDA for use with PDD. People often have the following concerns about these drugs:

Glutamate preservation: Namenda acts to preserve the chemical glutamate, which also helps cognition.  It doesn’t interact with PD meds the way AChEIs do, but it is usually less effective alone. However, it can be used with the AChEIs to improve their effectiveness. (Drugs with similar actions cannot be used together safely. Because Namenda acts on a different chemical, it CAN be used with other dementia drugs and that has been its main value so far. Like other dementia drugs, it requires live cells to work.

Concern: These drugs only last a few years and so I don’t want to start until I really need them.

• Fact: It is true that once a nerve cell is so weak that it can no longer produce acetylcholine, these drugs are not effective. However, AChEIs do not damage the cells; the Lewy bodies do that. AChEIs neither fight Lewy bodies nor protect the nerve cells. They simply extend the cells ability to function by preserving acetylcholine.  These drugs may not be very effective with MCI, but once dementia appears, they can improve one’s quality of life.  Starting them early usually means that they will be useful longer than if you wait to start them when your loved one has fewer functioning brain cells.

Concern: I’ve been told they have serious side effects like nausea, diarrhea, vomiting and other GI problems.

• Fact: Oral doses of these drugs can cause serious GI side-effects. However, both Aricept and Exelon come in patches, which eliminates most of these symptoms.

Concern: They are expensive. I’m afraid we won’t be able to afford them.

• Fact: These drugs are expensive. However, some companies now sell larger doses that cut down the cost considerably. Even if you don’t need the larger dose, you may be able to cut a larger size pill in half. Patches should not be cut in half. Some companies offer discounts to people who meet their criteria.

Concern: I have PD. Can I take these drugs? Won’t they increase my PD symptoms?

• Fact: They may. Since all AChEIs work to improve the level of acetylcholine, they change its ratio to dopamine and thus, may cause motor dysfunctions. You will need to work with your physician to find a happy medium between mobility and cognition. 

Concern: My father has Active Dreams. Will these drugs help with these?

• Fact: All of these drugs treat LBD’s symptoms in general, which includes Active Dreams and other acting-out behaviors. 

Summary: These drugs can improve cognitive function and other LBD symptoms but they may do so at a cost of decreasing mobility. They also lose effectiveness as live brain cells decrease. Decreasing stress and behavior management may work equally well and be effective longer.

The authors of this blog are not physicians. We report what we and other caregivers have learned by experience, from physicians and from the literature. This blog is informational only. You should always talk with a physician about individual issues.

Part 6: LBD and PD Drugs

We could call this blog and the next one “The Balancing Act” because they are about two groups of drugs whose actions are polar opposites of each other. Today’s blog is about PD drugs. Next week’s will be about dementia drugs. Be sure to read both blogs—they go together but there was just too much information for a single blog.

No drug will cure PD or LBD—or any other neurological disorder for that matter. However, they do treat the symptoms and that adds to one’s quality of life. Both groups are well known to LBD families, especially those with PDD, where the dementia was preceded by the motor problems of Parkinson’s disease.

Lewy bodies attack brain cells and extract chemicals the brain cells use to transmit information (neurotransmitters).  In the mid-brain, they remove dopamine, needed for good motor functioning. In the cerebral cortex, they target acetylcholine, needed for good mental functioning. These two chemicals operate on a ratio system. If the level of acetylcholine is higher than that of dopamine, the body acts as though the dopamine level is too low—with poor motor functioning. Conversely, if the level of dopamine is higher, the body acts as though the acetylcholine level is too low—with poor cognitive functioning.

PD meds that are too strong will improve mobility but decrease cognition.







Dementia meds that are too strong will improve cognition but decrease mobility.


Drugs used to treat PD act to change the dopamine/acetylcholine ratio in four ways:

Dopamine replacement: Sinemet has been the most commonly used PD drug for years. It effectively controls motor symptoms with few short-term side effects. However, its long terms side effects such as muscle rigidity and confusion can be serious.

Dopamine copying or mimicking: Requip, Mirapex and Neupro are in a newer group called dopamine agonists.  They cause fewer long term problems and are now usually prescribed first with Sinemet added, if needed, for better control.  Short term side effects include increased confusion and hallucinations. These drugs are not recommended for anyone with dementia.

Dopamine preservation: The following drugs all act in various ways to preserve the level of dopamine in the cells.  Physicians usually prescribe these weaker drugs to boost the effectiveness of Sinemet.

Symmetrel has side effects include increased psychiatric symptoms and anxiety. It is not recommended for anyone with psychiatric symptoms (or LBD-related symptoms such as hallucinations or delusions.)

Eldepryl and Azilect are new, still controversial, drugs. They don’t appear to have any serious cognitive side effects.

Tasmar and Comtan are drugs that inhibit a chemical that helps to move dopamine out of the brain cells. They do not appear to have any serious cognitive side effects.

Acetylcholine blocking: Cogentin and Artane are anticholinergics that maintain the balance by blocking acetylcholine and preventing it from being effective. Motor functioning may improve, cognitive symptoms will likely increase.  These drugs are rarely used today.

The bottom line is that PD drugs strong enough to improve motor function tend to increase dementia symptoms. Next week’s blog will explain how dementia drugs strong enough to treat dementia may increase PD symptoms. Families and physicians usually have to look for a happy medium, giving up some mobility to maintain cognition or vice versa. Most families opt for more cognition.

The authors of this blog are not physicians. We report what we and other caregivers have learned by experience, from physicians and from the literature. This blog is informational only. You should always talk with a physician about individual issues.

LBD and Drugs, Part 5: Lewy-safe Drugs and Alternatives

With so many Lewy-sensitive drugs, caregivers become concerned about all drugs. However, many, such as antibiotics, are fairly safe—or at least as safe for PwLBD as they are for anyone else.

 These are some of the conditions that make caregivers concerned:

Infections: Antibiotics and sulfa drugs, usually prescribed for infections, are seldom Lewy-sensitive. However, when used to prevent infections, they can become ineffective and stronger drugs will be required. This is true for everyone, not just the PwLBD. We should all practice infection prevention instead:

• Follow a healthy lifestyle with adequate fluids, sleep, exercise and a nutritious diet.
• Drink cranberry juice to avoid urinary tract infections. Once there is an infection, this does not good. Medication is required.
• Take Vitamin C, especially for upper respiratory infections.
• Use good toileting hygiene, which may not be easy if your loved one is still managing his own but is very important especially when UTIs are common. 
• When adult diapers are used, change often and clean the skin carefully between use.
• Wash hands often.
• Don’t share eating and drinking utensils.
• Sneeze or cough into your sleeve or shoulder.
• Avoid areas of contamination. For instance, avoid groups when the flu is around.

Depression: Antidepressants fall into several classes. The oldest, tricyclics and monoamine oxidasse inhibitors (MAOIs) are not recommended with LBD. Tricyclics such as Elavil are strong sedatives and MAOIs such as Nardil are strong anticholinergics. Drugs in the SSRI class, such as Zoloft, are safer and others such as Wellbutrin and BuSpar are mild enough that they are often used for behavior management. All should be started in small doses and monitored carefully.

Muscle cramps: Most muscle relaxants are unsafe for PwLBD. OTC drugs such as Tylenol or Advil help with the pain. Caregiver interventions to prevent the cramps may work best. They include:

• Check the medication log. (You should be keeping a log for just such concerns.)  Some drugs will cause cramps. Show the log to the physician and ask about changing the medication.
• Good exercise and less stress will lower the possibility of cramps.
• Relieve cramps with massage, a warm bath, or distractions that refocus your loved one’s attention.

Pain: For mild pain, OTC drugs like Tylenol or Advil usually do not conflict with LBD. For stronger pain, prescription drugs such as opiates or other narcotics in very small doses might work without conflict while larger doses of the same drugs may cause temporary hallucinations and other acting-out behaviors. Start very, very small and monitor carefully. The same caregiver interventions as those for muscle cramps may also help.

Orthostatic Hypotention (OH): Low blood pressure on rising is a common LBD problem.

• Medication: Check with your physician for Lewy-safe medications for this problem. There are several and the need differs with the individual. 
• Getting up slowly, with waits between rising and walking will also help.

Incontinence: Few drugs that reduce urinary urgency are safe with LBD. Flomax has been reported to work well with few side effects. However, many other caregivers report that it increased the incontinence instead of helping. Thus, an every two hour toileting schedule and night protection (such as Depends) is probably the best solution.

Other illnesses such as heart problem or diabetes: Many drugs taken for other illnesses are safe with LBD but always remind doctors that your loved one has LBD and ask them to check for conflicts. Sometimes the physician is so focused on the immediate problem that the LBD is temporarily forgotten. It must always be taken into consideration with any new drug, as must any other drugs your loved one is already taking.

Next week: LBD and Parkinson's drugs.

The authors of this blog are not physicians. We report what we and other caregivers have learned by experience, from physicians and from the literature. This blog is informational only. You should always talk with a physician about individual issues.

LBD and Drugs, Part 4: Allergy vs. Sensitivity

There’s a difference between “allergy” and “sensitivity.” Even a small dose of a drug or substance can cause an allergic reaction. For instance, my great-grandson, Caleb, is allergic to peanuts. His babysitter made herself a peanut butter sandwich. Then she carefully wiped the knife off (but didn’t wash it) before making a jelly sandwich for Caleb. The tiny residue of peanut butter left on that knife was enough to make Caleb sick.

On the other hand, a LBD caused-sensitivity makes a person react to a normal dose as though it were an overdose. That person might be able to tolerate a smaller dose just fine. Although some drugs, such as Haldol and most sleep aids  are too strong or too dangerous to experiment with, others might be worth the effort if  they meet these criteria:

The drug is considered mild, such as Ativan and most OTC drugs. Lewy-savvy physicians sometimes prescribe low doses of Ativan for anxiety or agitation.

Side effects are temporary, lasting only as long as the drug is in the body. Atypical antipsychotics, most OTCs and many pain medications fit this criterion.

Doses are small, perhaps even a quarter of the normal amount. Such tiny doses of pain medications like morphine may handle the pain with no unwanted side effects.

The drug is monitored carefully. Stop it as soon as unwanted symptoms appear.

Always discuss such experiments with the physician first. There may be something you don’t know that would make it a bad idea.

Some people are so sensitive to drugs they would want to avoid all potentially Lewy-dangerous drugs.

Red had some MCI but he was doing all right. Then he got dehydrated. He started hallucinating and having delusions that made him violent. The doctor gave him what she said was a mild anti-psychotic and it hit him awfully, constricting his muscles. He had been walking without even a cane before he got sick. Now he was almost bedridden. I couldn’t care for him by myself and so I had to put him in a nursing home. He kept acting out and they kept medicating him. I finally convinced them to try taking him off all the drugs. It worked. He calmed down and his dreams stopped. But it took almost a month for Red’s muscles to relax. And even then, he was in a wheelchair. He was never able to walk again.  –Jo

Red happened to be one of those who are not only very sensitive but are triggered by many drugs, even those that often help others with LBD. With any Lewy disorder, drugs should be started out in VERY small doses and increased until they provide the effect wanted OR they cause a problem. They should be stopped at the first sign of a problem. It won’t get better and will likely get worse.

Notice that Red didn’t recover right away after the drugs were withdrawn. People also vary as to how long it will take to get the drugs out of their system. This is because just as Lewy makes a normal dose react as an overdose, it slows the body’s normal process of flushing out the drugs.

Because caregivers tend to be more aware of the dangers of these drugs than even many medical professionals, you need to be ready to act proactively, speak up to the medical community and insist on your rights.  Finally, although there is a definite difference between an allergy and a sensitivity, it is a good idea to answer the always asked question "Is your loved one allergic to anything?" with a list of known Lewy-dangerous drugs and any to which he, personally, has had a bad reaction. The main goal here is to prevent him from getting the drugs so don't quibble about definitions!

The authors of this blog are not physicians. We report what we and other caregivers have learned by experience, from physicians and from the literature. This blog is informational only. You should always talk with a physician about individual issues.

LBD and Drugs, Part 3: Over The Counter Drugs

Just because a drug does not require a prescription does not make it safe for someone with LBD. While it is true that they are usually milder than prescription drugs, they can still cause problems. Many OTC cold and allergy drugs have benzodiazepines in their active ingredients. Less often, they have other seditives or anticholinergics. (See the July 17th blog for more about these dangerous drug classes.) Any of these drugs may trigger intense reactions, such as active dreams, hallucinations, delusions or general confusion. A person's first exposure to drug sensitivity may be with one of these OTC drugs.

I was diagnosed with RBD (Active Dreams) last fall. Sometimes I’d wake Jack but the dreams were mild. For years, I’ve used a mild antihistamine for spring allergies with good results. When they showed up last spring, I took my usual OTC allergy pill and went to bed. I had really scary dreams all night long and was so active that Jack escaped to the sofa. I didn’t take any more of that drug and the dreams reverted to their former benign state.   –Shannon

As was the case for Shannon, reactions to these milder medications are seldom permanent. However, they can serve as a warning. People seldom know that they are sensitive to a drug until they take it and have a reaction--and then the damage may be done. Shannon and Jack have been forewarned. They can assume that she is also sensitive to other, more dangerous drugs and stay away from them, thus avoiding the problems they can cause.

With these drugs, the buyer takes on more responsibility. You don’t have a doctor telling you what to buy. You choose from a shelf filled with similar drugs and hope it is the best one for the problem. Add Lewy’s sensitivity issues, and your job gets even harder.

Reading labels is a must. Avoid any drugs with active ingredients on the benzodiazepine or anticholinergic lists. (Mostly these drugs will be benzodiazepines.)

An easy way to identify unsafe drugs: If you recognize an unsafe drug on the shelf, compare its active ingredients to those of other drugs. If the new drug has some of the same ingredients, it is likely unsafe too.

Check it out. Once you’ve chosen a drug, take it to the pharmacist and ask if it is compatible with Lewy body dementia. If the drug is for someone who only at risk for LBD, there may already be a Lewy-based sensitivity. It’s a good idea to check with the doctor as well to make sure that this drug is not only safe with Lewy but also with any other drugs the Lewy partner is taking.

Start with a smaller than normal dose. Very likely that will do the job and it is less apt to cause problems.
Stop the drug immediately if you see unwanted symptoms.

Keep lists of unsafe drugs handy. The list on LBDtools includes links to all the other sites. Keep the LBDA wallet card handy for your own reference as well as for doctors and nurses:

• Anticholinergics list  
• benzodiazepine list 
• Dangerous Drug Lists on LBDtools.com
• LBDA wallet card

The authors of this blog are not physicians. They are caregivers and report what they and other caregivers have learned by experience, from physicians and from the literature. You should always talk with a physician about individual issues.