Update: Nearing the End of the Journey

Since we are traveling right now, and learning to use our new (to us) motor home is taking up most of our time, we are re-publishing some of our most popular blogs with a few updates added. This one is actually the most popular by far:

We received a question recently about how end-stage Alzheimer's (AD) and LBD differ, and what to be concerned about. By the time a person reaches end-stage dementia there’s so much damage that it’s all very similar and you may not see much difference. These are some of the differences you might see along with some suggestions about care:

Cognition degeneration: Both AD and LBD are degenerative dementias. That is, cognitive abilities will gradually decrease over time. Update: This is also true for many other dementias, such as Frontoltemporal dementia (FTD) and Vascular dementia (VaD). 

•  LBD’s characteristic fluctuations between awareness and confusion continue even into this late stage, albeit, few and far between. It is not unusual for patients to know their family members just before death. Look for these and take advantage of them for a final goodbye. However, remember that by now, your loved one will not be able to communicate well. Update: This is true for both types of LBD: Dementia with Lewy bodies and Parkinson's disease with Dementia.
• FTD does not fluctuate but cognition does not degenerate as quickly as emotional abilities, especially empathy.
• VaD degenerates only with each stroke event. However, the strokes can be so small and so often that the degeneration appears to be progressive. 

Verbal communication: Eventually any dementia patient will lose the ability to communicate through the normal channels of talking and facial expressions. However, there’s research saying that comprehension is the last ability to go, and so continue talking to your loved one and assume understanding. Remember that touch continues to be important, as does a loving tone of voice. In addition, don’t talk about them or argue with others in their presence anymore than you would if they were responding.

• LBD weakens facial muscles, thus talking and facial expressions become difficult often well before the end stages. Add LBD’s larger share of confused thinking. The result is that much earlier than with AD, LBD folks may stop trying to communicate through normal channels. Behavior becomes the main form of communication.

Acting out behaviors: Consider acting-out behaviors the body’s call for help. They usually become more intense as normal channels of communication fail. Look for physical and/or environmental reasons for the behavior: pain, too much stimulation (light, sound, etc.) See previous blogs, and The Caregiver’s Guide to Lewy Body Dementia. Update: There is a whole chapter about using communication in our new book, Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders.

• LBD affects thinking early on, thus acting-out due to delusions can be a very early, sometimes first symptom. LBD related symptoms such as hallucinations and acting-out behaviors will increase as communication becomes more difficult. However, they may change in form. With degenerating health, agitation and restlessness may be the most common “acting-out” behaviors.

Sleeping. People with any kind of dementia tend to sleep more and more as the end nears—20 hours a day is more the norm than not. If your loved one is restless or agitated at this stage, consider this “acting-out behavior” rather than a sleep problem.

General health: Eventually any degenerative dementia will cause a body to become incapacitated and die.

• LBD is more than a cognitive disorder. As already mentioned, its effect on muscles makes communication difficult. It can also weaken other muscles, and it can affect physical health right from the beginning. Therefore,complications like pneumonia, urinary tract infections or falls can be life threatening. Good patient care and early detection of problems becomes very important. Consider increased acting-out a signal that something is not right. Check for UTI’s, constipation, or other signs of discomfort. If you can find and remove the irritant, the restlessness should decrease

Life expectancy: If there are no complications, a person with dementia can live for many years before enough brain cells have died to shut everything down—often 20 years or more.

• LBD patients usually do have complications. Therefore, life expectancy is short: 2 to 7 years after diagnosis. However, LBD is seldom diagnosed until well into the disease process. Life expectancy from the first LBD symptom remembered by spouse or family would likely be similar to AD’s 15-20 years—perhaps longer with good care.

Using Alternative Therapies Instead of Drugs

For a long time we’ve advocated using a variety of alternative therapies with LBD and other degenerative disorders. The reason is simple. They are usually safer than drugs and are often more effective as well. That sounds like a win-win situation to us!

Why do alternative therapies tend to be safer than drugs?

First, please know that we don’t advocate avoiding drugs altogether. Some, such as Exelon or Aricept, are helpful. However, many are not. The most dangerous are anti-anxiety and anti-psychotic drugs. Visit www.lbdtools.com/resources.html for links to several lists of Lewy-dangerous drugs. People with—or AT RISK for—LBD can develop severe sensitivities to these drugs. Then, a normal dose acts as an overdose, with symptoms such as increased dementia, motor problems and/or heavy sedation. Although a person with PD may not have been sensitive to these drugs in the past, the likelihood that they will be increases as the Lewy bodies increase in their brain. The scary part is that a person may not know that they have become sensitive until they have a reaction—and then it can be too late.

Many Lewy body disorder symptoms fall into the psychotic or anxiety category: anxiety itself, depression, paranoia, hallucinations, sleep difficulties, and more. Stress also becomes an issue because the pressure involved in everyday dealing with a Lewy body disorder depletes a person’s ability to handle stress. Yet the drugs most commonly used for all of these problems are all on those “Lewy-dangerous” lists. Incidentally, many have also been deemed dangerous for anyone one over the age of 65, even if they don’t have LBD.

Alternative therapies (ATs) help us use our own resources to deal with the above problems. They don’t add chemicals to the body, don’t break the skin, and don’t conflicts. Yet they can be very effective. It is amazing what we can make our bodies do with a little direction. And that’s what alternative therapies do. For instance, if your muscles feel tense, you can take a pill which will make your muscles relax. However, you may also have side effects. Or you can use massage, which guides your muscles into relaxing themselves without side effects.

Why are alternative therapies often more effective than drugs?

Even when the drugs do not cause unwelcome side effect, they are often not as effective as alternative therapies. They only treat the symptom. They don’t develop your ability to deal with the problem. In fact, it is just the opposite. When you use a pill, it takes over and does the work that the body would normally do. That’s fine if the body really can’t do the job, as for instance, produce insulin. Then the drugs are lifesavers. However, in most cases, we just need a boost—a little help. The body is all about conservation of effort. If it becomes used to a pill doing a job, it will view an internal effort to do the work redundant—and may “forget” how. With alternative therapy, the goal is to provide a little assistance and guidance so that the body can continue to do its own job.

Anti-anxiety pills cause chemical changes in the body that cause the muscles relax—that is, they do the job for you. Eventually, the body may “forget” how to relax without their help. Massage is more natural and simply guides the muscles into the right formations and helps them to do their own work.

Other “alternative therapies” help the body use and main its resources. Physical activity is a great example of this. You may not think of exercise as an “alternative therapy” but it fits the description perfectly: It helps the body use internal resources to maintain its health without the use of drugs. In fact, most clinicians will tell you that exercise is more effective than any dementia drug.

Speech, physical or occupational therapy also fits this definition. It is well known that they can all be very beneficial with LBD, PD, AD and many other degenerative disorders. AT can also refer to a variety of stress management techniques from acupressure to yoga. Massage, deep breathing and positive thinking are also fairly well accepted forms of stress management. Meditation, brain stimulation and kinesiology are types of alternative therapies that are less well known. Essential oils, sound/vibration, puzzle, art and fractal therapies are some other forms of alternative therapies. These last types along with massage therapy are described further on LBDtools.com. We will be using these therapies in our workshops that will start in the fall.

Several types of alternative therapies are also discussed in Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, available on LBDtools.com.

A Special For Our Blog Readers Only!

Click here to buy

We are proud to announce that our newest book, Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders, is being well received by readers. In celebration, we are offering it to our blog readers at a special discount. Just click on the photo to go to buy this book that normally sells for $22.95 for only $19.95. All we ask in return is that you submit a review to Amazon.

Managing Cognitive Issues adds to the information in A Caregiver's Guide. Like the Guide, it is easy to read, filled with facts and illustrated with personal experiences. It describes the symptoms that precede LBD and offers many ways to slow the progress of this degenerative disorder using alternative therapies, and limiting the use of Lewy-dangerous drugs.

Click here to buy Trio

If haven’t yet read A Caregiver’s Guide to Lewy Body Dementia, or if you want another one for a gift, Whitworth Trio. This includes Managing Cognitive Issues, A Caregiver’s Guide, and Riding a Rollercoaster with Lewy Body Dementia, a Manual for Staff. This set of three books by Helen and James Whitworth are worth $62.95 separately but for a limited time you can get them all for only $49.95. 

A Caregiver’s Guide to Lewy Body Demetnia, published in 2010, is a excellent reference book. This book received a Caregiver Friendly award from Caregiver.com and Today's Caregiver magazine in 2012. It is usually on Amazon’s top ten list of books about Parkinson's, and top 100 about dementia (that's a much larger category). Just recently, it was Alzheimer’s Weekly and Dementia Weekly’s Book of the Week  in May, 2014.

Riding a Rollercoaster with Lewy Body Dementia, published in 2009, was our very first book about LBD. The information in it is very similar to that in the Guide, except that it is directed towards staff rather than family. Since 2011, it has not been is available except as part of our LBD Training Kit. People do continue to ask for it however, and so to celebrate our new book, we have included it in our Trio. Keep the first two for yourself and consider giving this book to a helper or care facility to help them provide more knowledgeable care to your loved one.

Read more about these books and others on the LBDtools website.

More About Lewy Bodies

By now, most of us know that Lewy bodies cause Lewy body dementia (LBD). They also cause Parkinson’s disease (PD) and REM Sleep Behavior Disorder (RBD). All of these are “Lewy body disorders.” Which one a person has depends on where the Lewy bodies are in the brain. Lewy bodies migrate and so a person may start out with RBD, then develop PD and go on to get LBD eventually. Of course, a person can also start out with LBD and never have many movement issues. See the 3/28/14 blog for more about these specific disorders. This blog is about Lewy bodies themselves and how they come about. (Special thanks to the gentleman in an Everett WA support group who asked questions about alpha synuclein and its normal function in the body. It sent us searching and this is the result of that search.)

What are Lewy bodies? They are clusters of proteins called alpha synuclein that have become damaged. Usually, when a protein is damaged, it is just sluffed off without a problem. But in this case, they become toxic. These toxic clusters look like microscopic round “bodies.” The more Lewy bodies a person has, the more symptoms they are likely to have and the more severe the symptoms will be.

What is alpha synuclein and what is its function? This protein is abundant in the brain. It is found in the tips of neurons, where it facilitates in the release of neurotransmitters, such as dopamine and acetylcholine.

What are the functions of dopamine and acetylcholine? Dopamine in the mid-brain helps to control fine movement and acetylcholine in the outer part of the brain helps to control cognitive skills such as thinking and planning.

What happens when alpha synuclein becomes damaged? The release of neurotransmitters is impeded. Depending on the neurotransmitter involved, movement or cognitive abilities or both can be affected. In addition, the neurons weaken and eventually die, which further limits the brain’s reserves of these neurotransmitters.

What causes alpha synuclein to become damaged and turn into Lewy bodies? No one knows for sure. However, experts believe that it is a combination of genetics and environmental toxins. For instance, farmers, who have been exposed to insecticides and other dangerous chemicals, are at a higher than normal risk of Lewy body disorders.

How can you identify Lewy bodies? Until recently, the only totally accurate way was via autopsy. That’s why we recommend brain donations. (See the 4/14/14 blog.) Other methods are becoming possible, but they are still too expensive for the average person and even then, are not available except in teaching or research facilities. However, Lewy –savvy neurologists can use some basic cognitive and hand-eye coordination tests along with a medical history of symptoms to identify Lewy body disorders accurately more than 90% of the time, when compared later with autopsies.

What can a person do to keep the Lewy bodies from spreading? You can’t—but you CAN slow them down a lot by living a healthy, positive, low-stress lifestyle and avoiding Lewy-dangerous drugs. See Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, available on LBDtools.com for more about slowing down these progressive disorders and improving one’s quality of life.