Merry Chirstmas!

Merry Christmas to all our readers. We’ve been traveling and so we are taking this week off and spending it with family. Next week will be about the New Year and all things new. And the week after that, we start a long series of blogs about stress and stress management. “Stay tuned!” And do enjoy the holidays.

We also want to take this time to thank our readers and wish you all a lovely holiday season. Take time to enjoy family and some of the small things that often get missed in the chaos of caregiving.

Jim and Helen Whitworth

Like a Child--but Not

Yes, dementia makes our loved ones similar to a child in so many ways. But there are several big differences.

Learning. Children can learn. Your loved one has lost much of that capability. Parents use various forms of discipline to teach children how to act. A child learns that if they do x, then y happens. Your loved one has lost the ability to understand cause and effect. Punishment simply feels like an attack. Praise feels good but your loved one probably can’t connect it with future behavior. For your loved one, prevention, bribes and distraction work better. Of course, there’s no learning going on and so you have to deal with each incident individually.

Using examples. Children often learn quickly by watching others and copying. Your loved one may be able to learn this way too—if you model the activity for them enough times. It takes an normal adult about six repetitions to learn something like a phone number. It takes a person with LBD many, many more repetitions, but it can sometimes be done. This is one big difference between LBD and other dementias. A person with Alzheimer’s loses the ability to learn at all. A vestige of that ability remains with LBD, but it is very limited. For example, eating can often become an issue. Reteach your loved one to eat by sitting across from him and with a smile, and slowing taking bite after bite. The smile is very important. Don’t talk—that’s distracting. Expect this to take far more than one meal to be effective. (See the 11/22/13 blog)

Perceptions of danger. People with dementia have often lost the ability to have a clear perception of danger. These skills are gone along with the ability to learn. What your loved one cannot do, he simply can’t do. Not now and probably not later either. Don’t expect it of him or castigate him because of his failures.

Instead, set up precautions: locks that he can’t unlock; alarms that tell you he has entered an unsafe area. Black paint or carpets in front of doors may appear as a chasm and be as good as a lock—unless this is a place where you want him to pass through at times, like the front door. Use baby monitors and surveillance cameras when you can’t be in the room with him.

When precautions don’t work—and they won’t all the time, use bribes to distract. Bribes are not a healthy way to deal with children. They teach manipulation. With your loved one, they don’t teach anything—they simply distract. The offer of a favorite treat works much better to get your loved one out of the street than yelling will.

Social rules. The ability to understand and follow social rules and niceties goes the way of being able to understand danger. Lower your expectations. Shrug, smile and move on. Others will follow your example. Apologize if necessary. Judy Scarff, in her book, The Journey Ahead: A Practical Guide for In-Home Caregivers, suggests a "Yikes" card to hand out to people who may not otherwise understand. This is a business-sized card that says something like, "Please excuse my loved one. He has a brain-damaging illness."

Size. Your loved one may be bigger and stronger than you are. Unlike a parent with a small child, you can’t use your size to intimidate or your strength to protect. You can’t just pick him up and carry him out of danger. If he becomes frightened or feels attacked, adrenalin kicks in and adds to his strength. You have to use your ingenuity to entice him away from danger or damage. Remember that he will mirror the intensity of your feelings and so try to stay calm. If you act angry or frightened, his behavior—and strength—will escalate. Bribes work well. Smile, offer an alternative activity and be patient. Your serenity will help him to calm down.

Adult concept. Your loved one has been an adult for many years. He may be acting like a child, but he doesn’t feel like one. You may have to set similar limits and safeguards that you’d set for a child, but if you treat him like a child, his behavior will likely increase due to frustration. Treat him with dignity and respect and you both will feel better.

For more, read A Caregiver's Guide to Lewy Body Dementia, available on LBDtools.com.

Lewy's Visual Problems

When Annie went from the kitchen with a tile floor to living room’s carpeted floor, she’d step and stumble. To her, the change of texture looked like a change in height. Janice kept spilling her coffee. She’d reach for it and her hand would miss it by inches—or hit it and instead of clasping it. Charles blinked a lot. His daughter thought he might have sore eyes. Laura complained of often seeing two of everything, especially when she was tired. Worse, sometime her vision was cloudy and blurred. Her husband suspected cataracts. Harold saw a pillow on the sofa and thought it was the cat. Gary kept seeing a little black dog when he knew nothing was there. He and his wife thought maybe there was a blood clot in his eye. All of these people had LBD-related visual perception problems. In each case, they went to the optometrist and get a clean bill of health for their eyes. It wasn’t their eyes causing the problem. It was their brain’s perceptual abilities that were at fault.

The occipital lobe at the back of the brain is particularly important for processing visual information, that is, for making sense of what we see. Lewy bodies often migrate to that area of the brain and when they do, visual perceptions can be affected. The following problems can all occur long before any cognitive issues become serious:

• depth perception (Annie’s step up),
• hand-eye coordination (Janice’s spilled coffee),
• light sensitivity (Charles blinking) and
• double vision (Laura’s “cataracts”)
• blurred vision (also Laura’s cataracts")
• illusions (Harold’s pillow-cat)
• hallucinations (Gary’s little black dog)

When failing cognitive abilities become involved, the problems can become more difficult. Ray kept using other receptacles for the toilet—a flower pot, the laundry basket, even the corner of the closet and was confused when his wife got angry at him. Marge saw socks on the sofa, thought they were snakes and started screaming. Lenard also saw a little black dog, but he believed it was real and had to be fed and even walked.

In Ray’s case he was seeing these receptacles as toilets. This didn’t seem odd to him because his ability to make judgments had already been affected. He didn’t think, “What an odd place for a toilet.” He just used it. Marge’s problem was similar. She identified the socks as “snakes” and became hysterical. Her failing cognitive abilities did not allow her to stop and think, “Wait a minute. What else might they be?” Lenard’s cognitive abilities were also failing. Unlike Gary, he was unable to tell that the dog he saw wasn’t real.

If there is little cognitive involvement, the optometrist may be the first doctor to see a person with early LBD. However, few are trained to be alert for such problems or to connect them with LBD when they do recognize them. Do your part and share this blog along with a copy of the LBDA brochure with your optometrist. You can download the brochure for free from http://lbda.org/content/lbda-brochure but it does require legal size paper. You can also use the following link to order ten or more brochures by filling out a contact form. http://lbda.org/?q=contact

For more information about Lewy body dementia, read our book, A Caregiver’s Guide to Lewy Body Dementia, available in the LBD Book Corner on our website, LBDtools.com, along with many other LBD-related books.

Visiting a Loved One with LBD

Usually these blogs are for the caregivers. This one is for family or friends who want to visit a loved one who is living in a care facility.

If you don’t prepare for your visit, it can be frustrating and even heartbreaking. Your loved one may not recognize you and they may talk very little. It would be easy to think that a visit is not very helpful. However, visitors do make a difference.

As the disorder progresses, the goal of the visit must also change. You may no longer be able to connect with your loved one as someone that they remember. However, you can still connect with them as someone who cares.

• Come prepared with supplies that might help with the interaction:
• A family photo album is usually a hit. The past always easier to remember!
• Gifts that provide comfort via the senses will be appreciated long after other gifts loose their attraction. Examples might be some flowers from your garden, a DVD with soft music, a favorite perfume or aftershave, unusual textures such as a soft afghan or a smooth, cool stone. Bring a scented sachet but avoid candles. The open flame could be dangerous.
• Bring a favorite food or drink not usually available in an assisted living setting. My mom loved oyster stew. I'd get a to-go cup from a restaurant that we used to go and bring it to her. Someone else might crave Fritos or chocolate covered cherries.

Plan your visit for a time when your loved one is most likely to be clean and comfortable. Check with the facility or caregiver to find out what time is best.

Pain can appear as negative behavior—aggression or withdrawal, for instance. It will also increase LBD symptoms such as hallucinations and delusions. If you notice such changes, ask the caregiver or staff about pain management. Be aware that for the person with LBD, pain management is often difficult because the drugs that fix the pain may make the LBD symptoms worse.

• Often the best gift you can give are things you can do with your loved one:
• Hold their hands, put your arm around them or give them a back rub. A person doesn’t have to recognize you to appreciate these caring and nurturing activities.
• Offer to brush their hair or apply lotion to their skin while you visit. These have a soothing affect.
• Try wrapping their hands or feet in a hot, wet towel for a very soothing and relaxing “spa treatment.”
• Open a window to feel a breeze, or better yet, take your loved one for a walk outside. This is especially welcome if they don’t get out much. I used to push my mother in her wheelchair around the block. It was a wonderful change of scenery for her.

Be careful of the way you talk. Talking down will increase agitation. Just chat away. Don’t worry about if they know who or what you are talking about. But do remember to talk slowly. Processing times for your loved one are very slow. Allow pauses between sentences. This may seem awkward for you but it will flow much better for your loved one. You will notice that after talking this way for a while that you become more relaxed as well.

For more information read A Caregiver’s Guide to Lewy Body Dementia, available at Amazon.com. Order it through our website, LBDtools.com and help us spread the word about this disorder.

Lewy Body Dementia and Eating

Along about this time of year we all think a lot about eating—it’s become a Thanksgiving tradition to have a big meal and eat too much. But our loved one with almost any kind of dementia and certainly with LBD often have problems eating even a small meal. There are many reasons for this:

Everything is slower. It takes a lot more time for a PwLBD to choose what on their plate to eat, put it in their spoon and move it to their mouth. Lewy bodies makes everything smaller too—steps, movements, voice, and the bites a person takes. This makes eating an even slower process. A person with LBD may have just started eating by the time everyone else is finished and then they are “done” too.

When muscles get weaker, eating becomes hard work. Think about what it would be like to lift some stones that are just a little too heavy for you. The first stones would be fairly easy. You’d just need to exert a little extra effort. Of course, that is tiring. And as you get more tired, the task gets harder. And finally, it just wasn’t worth the effort. That’s the way it is for someone with weak facial muscles.

Lewy bodies take away the ability to smell, often well before dementia shows up. (In fact, one symptom of approaching dementia is the “return” of smell in the form of olfactory hallucinations, usually bad smells.) Eating becomes less fun because this loss of smell affects taste and things that used to be favorite treats may not be anymore.

Swallowing can be affected so that it becomes very easy to choke and aspirate—draw food into the lungs. While your loved one may forget a lot they don’t forget negative things as easily. Thus, the fear of choking remains. They remember that when they ate or drank, they choked and became frightened.

As thinking abilities fail, immediate gratification remains but the ability to see cause and effect fails. Thus, with immediate rewards replaced by hard work and fear, your loved one sees little reason to eat.

Then add the poor depth perception and other visual problems that PwLBD are even more prone to have than PwAD. If you can’t see what you are supposed to be eating, how can you be expected to eat it!

But there’s help. In the Alzheimer’s Reading Room, Bob DeMarko suggests that it is as easy as 1,2,3: http://www.alzheimersreadingroom.com/

1.  Use RED plates. This adds some contrast and makes the food easier to see, which can be quite important for anyone with the perception and visual problems common with LBD. People with dementia in general eat 25% more from red plates! (reference)

2.   Be a guide. Your loved one will often mirror your behavior. Use this to help them re-learn to eat:

• Set a place for your loved one and one for yourself right across from them, in their direct line of sight. Put food on both plates.
• Sit at your place, look directly at your loved one and SMILE. Don’t say anything.
• Still without talking, take a bite. Chew. Smile.
• Take another bite. Chew. Smile.
• Take your time. Chew slowly. Be patient.

3.  DO NOT TALK.

• Just make eye contact, eat and smile.
• Cajoling does not work with a person who cannot relate to reasoning.
• Talking about other things is distracting.
• Just make eye contact, eat and smile.
• Be patient. Be VERY patient and wait for them to follow your lead.
• This process may take several sessions.

A good guide demonstrates how to eat each and every time (like it is the first time, every time). The good guide does this with a smile on their face and no words in their mouth.

Your loved one may find eating difficult or painful. If this is the case, you need to contact a doctor that specializes with such problems regularly. Speech therapists can also help.

Happy Thanksgiving, everyone!

For more information about dealing with LBD, read The Caregiver’s Guide to Lewy Body Dementia. Order it from Amazon via the LBD Book Corner on LBDtools.com and help us spread the word.

Making Holidays Fun

The holidays can be a difficult time for anyone with dementia. Change is scary and so as home décor changes, it adds tension instead of peace. Visits from family and friends can be overwhelming and tiring. For someone with Lewy’s sound and vision sensitivities, it can be even more difficult. Bright tree lights may be painful instead of fun. Loud music may be more stressful than enjoyable.

This doesn’t mean you should not celebrate nor that family and friends shouldn’t visit. Here are some tips to make your holiday season more enjoyable.

Strange places and too many people are both stressful. Therefore, forgo parties and large dinners that include your loved one. Instead, encourage family and friends to come visit—a few at a time.

Time visits for when your loved one is most alert. It is common for them to display “Showtime” (be unusually alert) with family, especially with those they do not see all the time. Enjoy this but expect them to crash and be very tired afterwards. Showtime is hard work!

Utilize respite care or adult day care to give you some free time for errands. If you do take your loved one out on an outing, plan ahead, avoid crowds, make sure it is something well loved, and don’t be gone a long time.

Play soft, soothing holiday music. Music has a different path to the brain and people can remember it when they can’t remember other things. Remember that music played too loud may be distracting and stressful.

Variety and change are no longer fun; sameness feels much safer and more comfortable. Therefore, don’t overdo the decorating. Keep your home looking and feeling familiar.

Get your loved one involved in the holiday preparations. Repetitious activities that are tedious for others are soothing for someone with cognitive impairment and can stroke feelings of accomplishment and pride. Enlist the help of older grandchildren and make this a family activity.

String garlands. All that’s needed is a long heavy thread and a darning needle. Try stringing cranberries, popcorn, even O-shaped cereal (Fruit Loops are cheerfully colorful). Extend the enjoyment by hanging edible garlands outside a window to attract birds.

Make paper chains. This takes some dexterity. It may be that a child can supervise while your loved one helps as able. Use construction paper, or even heavy foil wrapping paper.

Make pomanders. (aromatic balls) Stick cloves into oranges. These make lovely hangings or bowl displays and their scent may evoke calming, happy memories. Again, these require a little dexterity, but not much. Remember to throw them away after the holidays.

Crack nuts. Put your loved one to work with an old-fashioned nutcracker and a big bowl of walnuts, pecans and Brazil nuts. The ability to separate nuts from shells will depend on how much sequential ability is left. This may be another chore best done with a grandchild.

And finally, give yourself the challenge of matching the tempo of your loved one. Release some of that holiday generated stress by slowing down. Think about all the things you can leave undone instead of all those that need to be done.

Thanks to Independence4Seniors.com for many of these ideas.

Read A Caregiver's Guide for Lewy Body Dementia for more help with Lewy body dementia. Find it at LBDtools.com

Tests for MCI

More and more we are learning that the earlier LBD is identified, the better it can be treated. Then patients, families and physicians know avoiding Lewy-dangerous drugs, emphasizing a healthy lifestyle and focusing on lowering stress decreases symptoms. A diagnosis of mild cognitive impairment (MCI) is a reminder that these changes are also important dementia prevention tactics.

The research community has begun looking at neurological disorders much sooner too. Their challenge is to find signs of a disorder early enough to stop or at least decrease its progress medically. So far, they haven’t been very successful but they are getting closer. One thing they have done is to develop ways to identify MCI early on and even to tell the difference between the AD type (amnestic MCI or MCI-AD) and the LB type (non-amnestic MCI or MCI-LB).

In our 4/19/13 blog, I reported on a fairly new MRI test is now available to help physicians differentiate between several types of dementia, even at the mild cognitive impairment (MCI) level. Called the STructural Abnormality iNDex test (STAND) test, it provides a diagnosis similar to that of a highly skilled behavioral neurology specialist practicing in a large referral medical center. Thus a physician who sees only a few people with LBD a year can still diagnosis it as well as a neurologist who sees many such patients a year, as long as they have access to this test. The problem is that as yet, the STAND test is only available at large teaching or research centers where the specialists already are. Even so, it is worth asking for if you or your spouse/caregiver/family member see evidence of Lewy bodies.

A Lewy-savvy doctor can already identify the likelihood of MCI-LB during an office visit, using a battery of tests including the MMSE, below, and some drawings. The MMSE is given and scored with an emphasis on orientation. Then the patient is asked to a) draw a clock with a designated time showing and b) copy a picture of a cube. (Reference)

The Mini-Mental State Exam (MMSE), which takes only a few minutes in the doctor’s office has a good record of identifying dementia in general. It requires other tests to identify MCI-LB. While the SPECT test below is more accurate, it is not available in a doctor’s office as are the drawing tests above.

The single photon emission computed tomography (SPECT) test is a combination of CT and an injected radioisotope to produce a 3-D image of your brain. It has been found helpful in identifying LBD specifically even in early stages. The process requires special training for administration. While CT scans are available in most hospitals, radioisotopes have a short life and are therefore only available where they are manufactured, i.e., in large medical centers.

For more about LBD, read A Caregiver's Guide to Lewy Body Dementia, by Helen and James Whitworth. Available via our website, LBDtools.com.

Two of a Caregiver's Best Friends: A Journal and a Support Group

“Now I’m supposed to keep a journal?” Claire, a fiftyish woman with a harried look asks incredulously. “As if I have time for that when I’m doing all these other things I have to do. I don’t understand why Leon can be so like a two year old, getting into everything and so dependent I can’t even go to the bathroom alone and then when we go to the doctor, he’s just fine. No wonder the doctor doesn’t do much. Why does Leon do this? I get so mad at him. Why can’t he be that sharp with me? Is the doctor more important to him than I am?”

“Of course it isn’t just the doctor. He did the same thing when his daughter, Julia, came to visit. I’d been telling Julia that I was at my wits end with her dad. That I needed her to help me decide what to do about him. And so she came to visit him. Guess what? Now she thinks I’m bored with her dad and that I want my freedom without the hassle of a divorce. ‘Or why else would you want to put away such a gentle old man?’ she asked me. Gentle? He got so angry at me the other day that I thought he was going to hit me. He was sure I was setting up a date with some guy on the phone. It was a perfectly innocent discussion with a salesman but I couldn’t convince him of that. He remembers things like that, but he can’t remember from one minute to the next when I do something nice for him. Now he’ll probably tell Julia I’m running around on him. I’m at my wits end.”

Claire is dealing with fluctuating cognition, a hallmark symptom of LBD. It’s her first time at a support group and the group members have suggested that she keep a journal so that she can have a record of her husband’s fluctuating behavior. Her reaction is a common one. She isn’t receptive to adding another task to her already overwhelming caregiving job. Claire expresses many issues that new caregivers have:

• She takes Leon’s fluctuating cognition personally. This is a hallmark symptom of LBD. A person can carry on an intelligent conversation one moment and be utterly confused the next. (See the x blog for more about this symptom)
• She doesn't understand the special “Showtime” aspect of fluctuating cognition where a PwLBD will act with clarity with someone other than the caregiver then revert back to his normal confused state when that person is gone.
• She still believes she should be able to reason with Leon.
• She doesn't understand that Leon will remember the things in his reality, especially the negatives like her “infidelity”, easier than he can those in her reality—the nice things she does for him.
• She doesn't understand that her agitation just makes things worse because he will mirror the intensity of her response.

Claire made a great first step towards understanding Leon’s disorder—she attended a support group. Often the members, who have experienced the same issues Claire has, can offer her more insight than the doctor can.

Their suggestion that she keep a journal is right on. She can use it:

• As an on-the-spot record of Leon’s fluctuating behavior that she can show to the doctor or family members to support her own words. Videos and audio recording work well for this too.
• to keep track of those behaviors like Leon’s delusions of infidelity so that she can discuss them at her support group. That way she can learn better ways of dealing with these than becoming hurt angry angry.
•  to track Leon’s medications and their results. Because LBD is a progressive disorder, a person’s reactions to drugs will not necessarily continue to be the same. What once worked may now make symptoms worse, or may stop working at all or…
• to vent in a safe way—and perhaps be able to keep her cool with Leon, thus lowering his stress level.
• Can you think of other reasons for keeping a journal? I’m sure there are many!

Read more about the benefit of support groups in the 10/1/11 and more about fluctuating cognition in the 10/26/12 and 5/12/12 blogs. You can also read about LBD in general in A Caregiver's Guide to Lewy Body Dementia by Helen and James Whitworth. You can buy this book and many other LBD related books from our online store at LBDtools.com.

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.

Win a Caregiver Cruise!

Some deserving caregiver will win a 5 day cruise in the Bahamas for two. This has been checked out and is legitimate. You can nominate yourself or someone else, as long as the person is a caregiver of anyone 65 or older. This contest is sponsored by every year by Home Instead, a very reputable, caregiver focused company. We know them because they bought dozens of our books for LBD support group members in Ohio and a training packet for a trainer in that area as well.

Caregivers all have stories. You are all stressed and overworked. Take the time to tell your story to Home Instead and maybe you or your special caregiver will be the lucky winner! Apply today! The winner is acclaimed by public vote and the voting has already started. In fact, even if you don’t enter, start reading the entries and vote for who you want to win. (One vote per day, per person.) And if you do win, be sure to vote for your entry every day and tell all your relatives and friends to vote too. Feel free to share your story as a comment here and you may get some of our blog readers to vote for you too! Good luck!

Contest link: http://cruise.caregiverstress.com/  Go to this site and apply today!

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.

LBD and Surgery Drugs

Last week was about drugs in general. This week is a closer look at anesthetics. Surgery is a scary proposition for LBD caregivers. Any drug strong enough to use for surgery will likely have the risk of being Lewy-dangerous. However, some are worse than others:

Inhaled anesthetics are gases such as isoflurane or enflurane used to induce a controlled coma and allow surgery. They can make any elderly person confused for several months afterwards. The confusion may last much longer or be permanent if Lewy bodies are present.

Intravenous (IV) drugs such as midazolam (Versed) or propofol (Diprivan)   are not as Lewy-dangerous as inhaled drugs. Many LBD caregivers report successful surgeries using these drugs. That said, Versed is a strong benzodiazepine and Diprivan is a strong sedative—both classes of Lewy-dangerous drugs.

Regional anesthetics are used with spinal or epidural blocks. These drugs “deaden” the area of the surgery and tend to be safer than either of the above general anesthesias. Some major surgeries such as knee replacements can now be done with spinal or epidural blocks using low amounts of drugs like propofol or a combination of regional anesthetics boosted by opiates or narcotics. There appears to be less drug danger and less need for postoperative drugs with these procedures.  Limitations include:

• This method does not work for upper areas of the body, such as dental work.
• Because a person is awake during the procedure, cooperation is required. If your loved one has a history of agitation during stress, this might not be an option.
• It requires an anesthesiologist skilled in the procedure. Most problems with this type of surgery result from it being done incorrectly.

Sometimes a person’s first introduction to drug sensitivity occurs after surgery:

Luke had very mild Parkinson’s and his balance wasn’t the best. When he tripped, he fell and broke his leg. The doctor told us Luke would need surgery if he ever hoped to walk again but that with his PD, there was a possibility of dementia. Luke hated the idea of being bedfast, but even more, he was in extreme pain, and so we agreed to the surgery. He started hallucinating in the recovery room, seeing bugs crawling on the walls. I hoped that over time, he’d improve. He did, some. But he still gets very confused and still has hallucinations now and then. Nevertheless, we’d make the same decision again. He was in such terrible pain.   –Cindy

For Luke and his wife, there was only one way to go—have the surgery and stop the pain, while hoping that Lewy didn’t show up. For others it isn’t that simple—there may be other choices, such as medical treatment, physical therapy, or even learning to live with the problem.

Annie had experienced active dreams for years before she had an elective surgery in the late 1990’s. Annie’s dementia showed up not long after afterward. If she had known, as we do today, that active dreams are a strong risk factor for LBD, she would have opted against the procedure. She had lived with this problem most of her life and she could have continued to do so.   –Jim

Sometimes the choice is between quality and length of life.

Bill’s pacemaker battery was getting low and needed replacing. I asked the cardiologist if the pacemaker had been triggered. It hadn’t, which made a decision against surgery easy. But then I found out his defibrillator battery was getting weak. It had been activated several times, making that decision harder. If it quit, so would Bill’s heart. I still decided against the surgery, opting for quality of life over quantity. About six months later, that battery stopped working and Bill died in his sleep. If I had it to do again, I’d make the same decision.  –Marla

Some of the danger from surgery can be avoided if the anesthesiologist understands that geriatric patients are similar to children who require much smaller amounts of drug for the same effect. A person of any age at risk for or with LBD can expect similar or even more severe responses.

Consider all other options first. If you do decide surgery is necessary,

• Request a geriatric anesthesiologist who understands LBD’s drug sensitivity issues.
• Well ahead of the surgery, send a letter to the surgeon outlining your concerns. Include the LBDA wallet card and any examples you have of how drug sensitive your loved one is.
• Arrange to meet with the anesthesiologist prior to the surgery to discuss your concerns about LBD and drug sensitivity again.

We are not physicians and anything we say here is informational only. Always check with your physician about your individual personal concerns.

Lewy Dangerous Drugs

LBD caregivers generally know their loved one should be careful about drugs. However, with all the scientific terms and definitions, learning about which drugs are safe and which aren’t can seem daunting. It doesn’t have to be. While it is true that the more you know the better you can be sure of the right treatment, the bottom line is fairly simple:

Be wary of any drug used to sedate or to treat anxiety or behavior related problems. If given, report any heavy sedation, increased LBD symptoms or muscle problems.

Ask about possible side effects of a drug given for any other problem such as bladder control and monitor closely. Report any odd reactions, especially those that cause or increase LBD symptoms, muscle problems or heavy sedation.

Ask about possible non-drug solutions to the problem. Many behavior issues respond well to easily learned non-drug anxiety and stress management.

Any drug dangerous for someone with LBD may also be dangerous for someone at risk for LBD. Once a person has another Lewy body disorder like Parkinson’s or other risk factors, be concerned. The likelihood of problems may not be as high, but it is there.

For those who want to know more, read on.

The three drug properties especially troublesome with LBD are:

Anticholinergic: The drug blocks acetylcholine, a neurotransmitter needed for cognition. When Lewy bodies have already depleted this chemical, the drug may cause or increase confusion and other dementia symptoms.

Extrapyramidal: The drug blocks dopamine, a neurotransmitter needed for mobility. When Lewy bodies have already depleted this chemical, the drug causes or increases muscle stiffness, tremors, cramping, and constrictions.

Sedative: The drug slows the central nervous system (CNS), which includes the autonomic nervous system (ANS). When Lewy bodies have already comprised the ANS, this causes over-sedation.

The stronger these properties are and the more of them present in a drug, the more likely that drug will be dangerous for a person at risk for LBD. For example, Atropine is a very strong anticholinergic while Haldol has all three properties. Both are quite likely to be dangerous with LBD.

These drug classes are of special concern:

Anticholinergics: This huge class of acetylcholine blocking drugs is used to treat a variety of symptoms from anxiety to bladder control. They should be used with caution, if at all, by the elderly and anyone at risk for dementia. The Therapeutic Research Center posted this list of anticholinergic drugs. Download it and keep it handy for a reference.

Antipsychotics: This class of medicines are approved by the FDA to treat psychoses such as schizophrenia. Although they have never been approved to treat dementia, doctors may prescribe them to treat LBD’s delusions, hallucinations, combativeness or acting-out behaviors.

• Traditional antipsychotics (TAs): Drugs developed in the 1950’s to treat severe psychosis. They have strong sedative and extrapramidal properties and mild anticholinergic properties, making these drugs quite dangerous when Lewy bodies are present. With the exception of haloperidol (Haldol) these drugs are seldom used anymore. However, it is still commonly used in hospital emergency rooms for to calm down disruptive patients.
• Atypical antipsychotics: Also called second generation antipsychotics. These drugs don’t cause the muscle problems that TAs do, but they have strong sedative and anticholinergic properties. Even so, many Lewy-savvy physicians still prescribe these drugs, especially quetiapine (Seroquel), as the best of the limited choices available for otherwise uncontrollable acting out.

Benzodiazepines: A family of sedative drugs used to treat anxiety. These drugs also have anticholinergic properties. This combination makes them so potentially dangerous when Lewy bodies are present that they should almost always be avoided. In fact, recent research finds these drugs potentially dangerous for the elderly in general. The Wikipedia has an extensive list of these drugs along with their half-lives. The longer the half-life, the longer the drug will stay in the body, although Lewy bodies tend to slow down the process and extend that time.

Inhaled Anesthetics: These extra strong sedative drugs used to induce a controlled coma to allow surgery can make any elderly person confused for several months afterwards. The confusion may last much longer or be permanent if Lewy bodies are present. Some surgeries can be done with less dangerous drugs and some condtions can also be treated without surgery. Ask the physician about alternative choices when considering surgery for anyone with or at risk for LBD.

More about drugs next week!

New Books about LBD

A couple of books are coming out soon that might just be good competition for A Caregiver’s Guide to Lewy Body Dementia. Both are resource books rather than the personal stories that most books about LBD have been up to now. Both are by knowledgeable physicians and both are directed more towards the family than the medical community. Click on the book to go to Amazon and learn more about it.


Making the Connection Between Brain and Behavior, 2nd Edition. Coping with Parkinson’s Disease by Joseph Friedman, MD. This book is due out on July 23rd.  Dr. Friedman is a member of the LBDA Scientific Advisory Council. I’ve read parts of the first edition of his book (published in 2006) and found it excellent, if dated. Dr. Friedman’s writing is clinical enough for professionals but fairly easy to read by families as well.  You can order this book from Amazon now for $13.63 and they will send it to you as soon as they get it in.

Dementia with Lewy Bodies and Parkinson’s Disease Dementia: Patient, Family and Clinician Working Together for Better Outcomes, by J Eric Ahskog, MD, PhD. It is due out in September and is already listed on Amazon. Dr. Ahskog has worked at Mayo Clinics for over 30 years and so he has that experience to draw from. I reviewed a previous book, written in 2005 (The Parkinson’s Disease Treatment Book: Partnering with Your Doctor to Get the Most from Your Medications). I found his writing is clinical but still easy enough for the lay person to understand. That book was aimed at the medical community as well as the family and I suspect this new one is too. It is pricy for caregiver books, almost $28, but very cheap for a haredcover textbook. Jim and I believe it is worth considering.

We’ve added two other books to our LBD Book Corner as well:


Twice a Child by Ann Elia Stewert came out in May. It is a novel about an 85 year old man with dementia, loosely based on her father, Poppy, who had LBD like symptoms. The Kindle version is only $4.99, and that’s what we’d recommend you choose if you can, for non-reference books like this.


Going Gentle into the Night by Sandra Ross also came out in May. This is another personal story with, Ms. Ross says, information that a caregiver can easily read and use.  It is great to see so many of these books appearing! This book costs $14.94 for paperback and $4.99 for the Kindle version.

Paper vs Kindle. We recommend paper when buying a book like the top two. You will likely want to refer to these books often, highlight information and write in the margins. However, for a good read, like most of the personal stories about LBD, Kindle versions are great—if you have an e-reader, of course.

Obsessive Compulsive Disorder (OCD) with LBD

This is different from impulsiveness, which is doing something without considering the results. This is the need to do a certain behavior like gambling, shopping, eating or sexual activity repeatedly without consideration of the results and dwelling on that behavior excessively in response to hidden anxiety. Women are more likely to overeat and shop; men are more likely to gamble and be obsessed with sex.

While not specifically a Lewy body symptom, OCD is a common response to the anxiety that can accompany any degenerative disorder. It may also be a side effect of certain medications.

Parkinson’s drugs, particularly Requip and Miripex, but also Sinemet on a lesser scale, can sometimes cause ODC-like behavior. When the drugs are stopped or decreased, the behaviors may disappear. Times vary. The compulsive behavior may not show up for as long as a year after the start of a drug. Once the drugs have been adjusted, it can take from days to months for the behaviors to subside. If changing the drugs don’ work:

Don’t use logic. It won’t work. Even with a person who can still be logical in other situations, OCD does not respond to logic. The compulsions overcome awareness and the person cannot see the problem. Your interfering is the problem they see!

Try distractions. This may work because LBD shortens attention spans. Try to get them interested in something else. Suggest something your loved one likes, such as going for a walk or a favorite food, activity, TV show or video.

Build in limits. With each targeted behavior, the limits would be different. If eating is the behavior, monitor the food in your home and limit what is available. Offer healthy choices. With gambling or shopping, limit the funds available, up to canceling or changing your credit cards. Monitor your computer; it is a great source for shopping and gambling.

Evaluate stress levels. OCD is a response to anxiety—stress. Incorporate stress management tools and use them with your loved one regularly. This is a partnership activity. Since your loved one mirrors your stress, his won’t go down unless yours does.

When all else fails, ask the doctor about medication to decrease the behavior. Some caregivers report that Seroquel helped.

Next week will be about sexual acting out, which can be a compulsion with some LBDers.