The Whitworths of Arizona, bringing science to you in everyday language.

Friday, May 31, 2013

LBD Cousins and Companions

The last two blogs have been about the Lewy Body family: Parkinson’s disease (PD), Lewy body dementia (DLB and PDD) and REM Sleep Behavior Disorder (RBD or Active Dreams). This one is about some “cousins” and some common companions. These two disorders are cousins--that is, they are related to LBD in some way.

Attention Deficit/Hyperactive Disorder (ADHD) is a mood disorder that attacks young children is a strong predictor of LBD when it perseveres into adulthood. Hyperactivity, poor attention skills and impulsivity are the most common symptoms.  Like LBD, this disorder depletes brain cells of needed chemicals. See our 12/7/12 blog for more about this disorder and its connection to LBD.

Multiple System Atrophy (MSA)  is related to the LB disorders because it is also believed to be caused by damaged alpha-synuclein proteins. It affects men and women equally, primarily in their 50’s. Like Lewy body dementia, MSA attacks movement and the autonomic nervous system. However, it causes neither dementia nor the perceptual symptoms like the delusions and hallucinations that lead to acting-out. LBD and MSA also have other risk factors in common such as Active Dreams. In fact 90% of PwMSA will experience these sleep disturbances.

LBD appears alone only 5% of the time. Autopsies usually show evidence of two or more dementias, even when the symptoms were specific to only one. The most common dementias are:

Alzheimer’s Disease (AD). You can’t talk about LBD without mentioning Alzheimer’s. DLB, the type of Lewy body dementia that starts before motor dysfunctions do, is often diagnosed first as AD. In fact, until recently, it almost always was. Even PDD was diagnosed as Parkinson’s with Alzheimer’s until the late 1990’s. With AD, damaged tau and beta-amyloid proteins kill off neurons generally (rather than selectively as Lewy bodies do) and therefore, the damage is more complete—no fluctuations. Also, AD’s damaged proteins tend to stay in the cerebral cortex—they don’t migrate to other areas of the brain as Lewy bodies do. Thus you will often see impaired cognitive abilities, especially memory, with a fairly healthy body until late in the progress of the disorder, when so many brain cells are dead that anything may be impaired.

Frontotemporal Dementia (FTD).  Although this disorder is often misdiagnosed as LBD, it is caused by an abnormal tau protein, and thus is therefore more closely related to AD. It is the most common dementia for people under 60 years of age—even more common than Alzheimer’s. This disorder affects one’s ability to empathize, making a PwFTD appear unfeeling and selfish. As with LBD, thinking errors and delusions are common. However, there are fewer physical or memory problems. This, along with its early onset, makes it difficult to identify and it is often not diagnosed as anything but a personality defect that the person is unwilling to change. Like LBD, it is most common in men. However,FTD is not likely to accompany Lewy body dementia.

Vascular Dementia (VaD) or Multi-Infarct Dementia (MID). When a series of small strokes (infarcts) deprive the brain of vital oxygen, VaD symptoms appear. Disorientation in familiar locations, walking with rapid, shuffling steps, incontinence, laughing or crying inappropriately, difficulty following instructions, and problems handling money may appear suddenly and worsen with additional strokes. High blood pressure, cigarette smoking, and high cholesterol are some of the risk factors for stroke that may be controlled to prevent vascular dementia.  It often appears as a third dementia in autopsies but may not be recognized in life because the symptoms are so similar to other dementias. Even the strokes that cause it may go unnoticed because they will appear as simply a few “bad” days, a fluctuation that is common to LBD.

Mixed Dementias. Alzheimer’s is the most common dementia to accompany DLB. It may also accompany PDD, but much less often. Frontotemporal dementia and VaD are also common with both types. Therefore, when you see symptoms more common to Alzheimer’s, such as wandering, it is probably because AD is actually present. A sudden drop in functioning may herald the presence of VaD, especially if the functioning does not return to previous levels.

Sunday, May 26, 2013

More About the LBD Family

Last week’s blog discussed how Parkinson’s disease and two types of dementia are all members of the Lewy body family. This week expands on that with a more scientific view. Also, new research has suggested another member of the family, REM Sleep Behavior Disorder.

Damaged alpha-synuclein proteins clump together to form the microscopic round deposits called Lewy bodies. Unlike Alzheimer’s damaged proteins, found only in the cerebral cortex, Lewy bodies can be found in many areas of the brain. Besides dementia, these damaged proteins can cause motor problems, autonomic nervous system (ANS) dysfunctions, perceptual problems, mood disturbances and more, depending on where they are in the body.

At present, identifying the presence of Lewy bodies other than by their symptoms is difficult but that is changing. Brain scans are getting more accurate and researchers are actually finding Lewy bodies in other, more easily accessed areas of the body, like the gastro-intestinal (GI) tract.

Alzheimer’s damaged proteins are thug-like, attacking and killing whatever neurons (brain cells) they touch. Lewy bodies are more selective, choosing only those neurons that contain certain neurotransmitters—chemicals that the cells need to function properly. They extract the chemicals, leaving the cells weakened and eventually dead. The targeted neurotransmitters vary, depending on the area of the brain.

Parkinson’s Disease. In the mid-brain, Lewy bodies extract the chemical dopamine, instrumental in fine motor control. This results in the motor symptoms of Parkinson’s disease. Although PD starts out as a movement disorder, other symptoms appear the disease progresses. One of the most distressing is dementia. (See our 6/15/12 and 10/12/12 blogs.)

Lewy Body Dementia. While this term was once synonymous with Dementia with Lewy Bodies, it is now an umbrella term that defines both types of dementia caused by Lewy bodies: dementia with Lewy bodies (DLB) and Parkinson’s disease with dementia (PDD).

Dementia with Lewy Bodies (DLB). Dementia is defined as a loss of cognitive skills such as memory, thinking, or impulse control, severe enough to interfere with functional ability or activities of daily living. Such losses occur when Lewy bodies in the cerebral cortex target the chemical, acetylcholine. When no PD is involved, the resulting disorder is called Dementia with Lewy Bodies.

Parkinson’s Disease with Lewy Bodies (PDD). When someone with PD develops dementia, it means that the Lewy bodies have traveled from the midbrain to the cortex. Both dopamine and acetylcholine are targeted, which causes both motor and dementia symptoms.

People with PD (PwPD) are a ready-made group of people at risk for dementia. Therefore most of the subjects in the growing pool of research about early- and pre-Lewy body dementia are PwPD. However, it is important to remember that LBD doesn’t have to start with Parkinson’s. It can skip the PD and go right to dementia—and then of course, it’s called Dementia with Lewy bodies. Even so, since two types are so similar, almost everything researchers learn about PDD and its precursors, we can also apply to DLB, that is, to LBD in general.

 REM Sleep Behavior Disorder (RBD). Caregivers sometimes call RBD “Active Dreams” because the chemical switch that prevents movement during normal dreams is damaged. While RBD has been known to appear in childhood, it is more common after 50. A PwRBD can be very active, thrashing their limbs around, talking and even walking in their sleep. (See our 11/2/12 blog.)

Although RBD can occur alone, it is very common with PD and both types of Lewy body dementia. When researchers autopsied brains from people who died with RBD, they found Lewy bodies even when no other LB disorder was present.  Thus we include it here as a Lewy body disorder, usually the first one to appear.

Next week’s blog will be about disorders related to LBD and some lookalikes.

Friday, May 17, 2013

A Lewy Body Family History

It all started back in 1817 when Dr. Parkinson described “shaking palsy.” Eventually, the disease was named after him. Fast forward almost a hundred years: In 1912, Dr. Lewy was searching for the cause of PD in the autopsied brains of Parkinson’s patients. He found that the microscopic round bodies of protein that were eventually named for him were always present in the area of the brain where movement is controlled. Thus, since 1912, it has been known that Lewy bodies and Parkinson’s occur together, although, until the last decade, they weren’t sure which caused which.

Fast forward again, to the 1980’s. Dr. Kosaka found these same Lewy bodies in the cerebral cortex, or the thinking center, of the brains of people who had displayed the symptoms we now relate with Lewy body dementia.

However, even though researchers knew the same “Lewy bodies” were present in both Parkinson’s and in that dementia Dr. Kosaka had found, dementia was not considered a symptom of PD until the early 1990’s. They were thought to be two separate diseases that often occurred together: PD and ‘dementia,’ usually Alzheimer’s. Then, in 1994, Parkinson’s disease with dementia (PDD) was recognized as part of the Parkinson’s picture and given its own insurance code.

Two years later, in 1996, a world-wide group of dementia specialists convened and developed clinical criteria for Dementia with Lewy Bodies (DLB).  At that time, the terms ‘dementia with Lewy bodies’ and ‘Lewy body dementia’ were used synonymously. However, it was not yet associated, at least formally, with PD. Dementia specialists treated LBD and movement specialists treated PDD, as a symptom which could occasionally show up in late stage PD.

By the early 2000’s specialists were beginning to recognize the similarities between PDD and LBD/DLB.  Finally, in 2005, a group of movement and dementia specialists met together and agreed that Lewy bodies caused both types of dementia and that their cognitive symptoms were similar. At that time, they determined that ‘DLB’ described the type of dementia that started prior to any motor symptoms and that ‘LBD’ was an umbrella term for both ‘DLB’ and ‘PDD’.

Notice that the experts were now saying that Lewy bodies caused these disorders (and PD as well)--not the other way around. And that’s why we now say that the Lewy body family has at least three members: PD, DLB and PDD. They are all related. PD occurs when the Lewy bodies reside in the midbrain where motor functions are controlled. DLB occurs when Lewy bodies reside in the cerebral cortex where cognitive abilities are controlled. And PDD occurs when the Lewy Bodies migrate from the midbrain to the cortex and both motor and cognitive functions are compromised.

As to what causes the damage that results in Lewy bodies, that’s still up for grabs. However, the evidence is becoming stronger and stronger that it is a combination of genetics and toxins.

Next week’s blog presents a more scientific vies of the Lewy body family.

Friday, May 10, 2013

Blogs and FaceBook Pages about LBD

When I first met Jim and became involved with the LBDA in 2005, it was the only game around. No books, no blogs, no other websites about LBD. Well, there was one book: Dementia with Lewy Bodies, edited by John O’Brian, David Ames and Ian McKeith came out that year.  It was written by the best experts in the field and is still probably one of the best books for professionals. But with its clinical language and high price ($130), it isn’t a book for caregivers. The only reason we have one is because every 2005 LBDA Board member received one a gift. Jim was President that year and he still prizes this book. However, a lot has happened in the nearly a decade since that book was written. It is no longer current although the information in the book is still accurate—it’s just that researchers have found out so much more.

Now there are many books for LBD caregivers. I named several in a couple of recent blogs. In this blog I’d like to list some other resources. All of the following blogs are in the blog list on the right of this page. Do check them out.

3 Years and 13 Dumpsters is hosted by Joy Walker. You may recognize the name. She wrote a book with the same title. Joy is a surviving LBD caregiver, who kept on giving even after her father passed. Now she is a LBDA Support Group facilitator and Helpline responder. Her latest blog was about hospice, and well worth the read.

Sharing my life with Lewy Body Dementia is hosted by a man who calls himself Silverfox. He and his wife also write several other blogs. Silverfox has LBD and he posts about his experiences with it. Caregivers hear a lot about what other caregivers think, but it isn’t often you find an articulate person with LBD who is willing to share his/her thoughts with us. I wish he added more feelings, but after all, he is a man....Even so, his stories may help you understand your loved ones better.  His blog received a Healthline Best of the Web award.

Living with a Thief named Lewy Body Dementia is another winner of a Healthline Best of the Web award. This is hosted by Kathy Lowrey, whose husband of 31 years was diagnosed with LBD in 2007 and is still living at home. Her experiences will resonate with your own!

Living Well with Lewy Body Dementia is hosted by UK blogger Ken Clasper, who was diagnosed with Early Onset Lewy Body Dementia. Ken’s writing is more political than personal, but nevertheless, interesting. One of his latest blog was about “assistive technology,” specifically GPS tags for people with dementia. His take is that if it helps, and cuts costs as well, do it and quit worrying about “civil liberties,” which he says, he lost when he was diagnosed with LBD.

The new trend seems to be Facebook pages that act as a forum. Here are a couple:

Dementia: The Journey Ahead is hosted by Susan Scarff, author of a book by the same title. This is another book I reviewed recently and the blog is every bit as good. Lots of good suggestions for websites and some good discussions as well.

Memory People  is hosted by Rick Phelps, who has Early Onset Alzheimer’s Disease (EOAD) but people with all kinds of dementia, including LBD, post. This is another place I go to when I want to know the patient’s view. Patients and caregivers both post which provides a well-rounded view of the issue discussed. This is a closed site so as to maintain privacy. From your FB home page, type “Memory People” into the search bar.  Then click on Memory People, and follow the instructions.

Our website:
Bookstore: LBD Book Corner

Thursday, May 2, 2013

A Caregiver's Guide to Lewy Body is On Sale!

Last week I announced that finally, A Caregiver's Guide to Lewy Body Dementia was in stock again, after a very long hiatus. This week we have more exciting news.

Amazon is selling it for $13.12. That's lower than we have ever seen it on their site. That price won't last long and so now is the time to buy extra books for gifts or group members.  I think the regular price has gone up to almost $14, from the $13.57 it used to be, so again--if you were thinking of getting a book or two, now's the time.

When you buy, please don't forget to enter Amazon through our website. It's easy: go to, click on the Book Store, then click on whatever book you want to buy. Once you are in Amazon, you can explore all over their site and order just as you always do. We'll get a commission on anything you buy from the time you enter via our site until you leave. We've added a page of supplies and one of activities too, so check them out.

Bookstore: LBD Book Corner

The Value of Music with Dementia

Music wakes up memories and increases alertness, with the effects lasting long after the music is over. It has been used successfully with Parkinson’s to improve motor control, with better results than with physical therapy. Listening to music has helped people who seldom talk to speak up surprising well. Music also fights depression, a common Lewy symptom.

Music, memories and emotion link together in the prefrontal cortex of the brain. Because different dementias affect this area differently, responses to music are different too.

Alzheimers: The prefrontal cortex is one of the last areas to atrophy. Thus, music can serve as a connection between emotion and memories until very late in the dementia journey. Even after the ability to communicate is damaged, people with AD can sing, and even play instruments.

Frontotemporal dementia (FTD): This area of the brain is one of the first hit and so music isn’t nearly has helpful for people with FTD. They no longer have emotions with which to connect the music.

Lewy body dementia: PwLBD never completely lose their ability to feel emotions and like PwAD, appear to be able to experience that feelings/past experiences connection that music provides. Caregivers report that their loved ones will perk up and even sing when they hear a familiar song.

While a professional music therapist can be helpful, a lay person—caregiver, or staff—can also provide music therapy. Consistency is the important factor. Make it a regular part of your loved one’s day. As with everything that helps with dementia, the earlier and the more you include music in their daily life, the better it will work. It will not cure, or even stop dementia. But it can improve awareness at the moment and increase ones quality of life.

Have songfests. Sing together, or if necessary sing to your loved one. Be as diligent about this as you are about physical exercise and good nutrition.

Be patient. Don’t expect improvements immediately. It may take several sessions to see changes.

Play familiar music. Chose music that you know your loved one likes best. Chose a variety, with some slow and some fast (but not so fast that it generates agitation).

Do not use a radio or TV to provide the music. This often becomes "white sound" or background noise that agitates rather than calms.

Do use an iPod or MP3 player with earphones and an individualized playlist. This list will differ with each person and may take a little trial and error before you get it right. Start with the most popular songs in the years when your loved one was between the ages of 7 and 19.

Make music a tool to facilitate the proper mood for an activity. Use soft, relaxing music to counter agitation. Use music with a good rhythm for movement.

You can find books of songs familiar to seniors in the activities section of our bookstore.

Bookstore: LBD Book Corner, Activities Section