Friday, August 22, 2014

Keeping a Healthy Brain

Living a healthy lifestyle is important for both caregiver and loved one. Many of the same things that keep you physically healthy also keep your brain healthy.

Get active. Physical activity reduces the risk of dementia. If dementia should appear, physical activity keeps the mind working better longer. Even with severe dementia, exercise is important—“better than any dementia drug,” experts say. Aim for 30 minutes of moderate activity five or more days per week.

Exercise your brain. The brain is a muscle and it needs to be exercised and challenged too. Mental activities like puzzles and games, taking new classes, and traveling to new places all appear to slow down memory loss. As dementia increases, the challenges change from doing new things to maintaining old skills. However, the need for challenge continues.

Eat healthy. Include fatty acids, colorful fruits and vegetables, and the right supplements in your diet. Many studies have found that a Mediterranean-style diet based on whole grains, fruits, vegetables, legumes, nuts, olive oil, and fish is good for protecting against dementia. It may also decrease symptoms once dementia is present. For more about nutrition, read this blogs LBD and Nutrition five part series, starting 95/13, or either of the Whitworth books.

Maintain your friendships. Staying socially active appears to be as important as mental activity. We are social animals and we tend not to do as when we are isolated. Find ways to get out and visit with others regularly. Find someone to sit with your loved one at least once a week so you can get out with others. This serves a double purpose. Your loved one needs to socialize with someone besides you too. When you can’t get out, use the telephone and internet to make contact with others.

De-stress. Tension, anxiety, and worry become toxins to the brain dealing with even early dementia. They slow it down and increase other LBD symptoms. Do everything you can to make your family’s life calm and stress-free.

Go Alternative. Use alternative therapies instead of drugs whenever possible, especially for stress management and acting out. These are safer and often much more effective. An added benefit is that they usually include personal attention. For example, a relaxing massage can not only de-stress but also be a form of communication as can applying a soothing topical oil to decrease joint pain. Singing can include the whole family. And pets can be something to talk about as was as an ever-present sources of comfort.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, available on

Thursday, August 14, 2014

Getting Out of the House

The blog is going up early this week--to make up for the times when it was late! We are visiting family and getting ready to leave on a long weekend of camping. 

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Last week you met Dave and Bet and we talked about the learning that’s required of the new LBD caregiver. An active couple, they hadn’t let Bet’s PD stop them. A few months ago they were riding their tandem bike in marathons. Now, she falls asleep on the bike—not very safe on a two-wheeler! Dave solved that problem with a new vehicle called a Quadribent—a four-wheeled contraption something like a land-locked paddle boat. Now Bet sits beside Dave instead of behind him and is fastened in with a seatbelt. “It’s not all good,” Dave tells us. “With the tandem bike, when I pumped, her pedals went round with mine and she had to move her legs. Now each side is separate and nothing keeps her from stopping. But at least, we can get still out and bike, which we’ve always enjoyed.

Dave knows he and Bet are on an adventure where the rules continue to change. He is fortunate that he can be open to new ideas when old ways don’t work anymore. That’s what is needed if you are going to survive as a LBD caregiver.

With Bet’s awareness is now fading faster than her physical abilities, eating out has become a challenge too. “Appetizers!” Dave exclaimed as he told us about his latest discovery. “They work better than regular meals. Finger foods, you know. Vegetables, and dips and stuff like that. But not sandwiches. She can’t hold them together anymore. Cheeseburgers still work, if there’s lots of cheese for glue.”
Dave has learned to flow with what works. Appetizers are great. So are chicken nuggets or other things you can eat with your fingers. On the other hand, things that can fall apart like sandwiches are poor choices. If your loved one does want a sandwich, be sure to ask for a knife and fork too. You’ll need them!

“I’ve begun to worry about public bathrooms,” he said. “The other day, she went into one and didn’t come out for the longest time. Finally, a lady came up to me and asked if my wife had blond hair. When I nodded, she told me that there was a woman with blond hair standing in there, looking confused. Then that kind lady told me there wasn’t anyone else in the bathroom and so she’d stand outside and keep watch while in went in and rescued my wife.”

Dementia makes decisions very difficult. Faced with so many doors, it’s no surprise Bet was confused. Many malls and large stores have family bathrooms. Doing some research before you go out can make your excursions a lot more pleasant. Some places have a single stall or room and that works well too. You can lock the door and no one is going to walk in on you. Try to limit your trip to places with family or single-stall bathrooms. However, your loved one needs to use the bathroom where that’s not an option, you can—and should—go with them. You might explain and ask for help—perhaps, ask someone to stand at the door and keep the place empty until you are done. People will usually be very glad to help if you are willing to ask.

Doing your research is as important as being open to change. Knowing what to expect, or how others have handled challenges or what’s available can make your job much easier. Asking for help is also important and the next blog is about just that.

For more about adapting and doing research, read our books, A Caregiver’s Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders, both available on our website,

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Saturday, August 9, 2014

Caregiving is NOT a One-Person Job

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Dave and Bet were our neighbors in an RV campground. Bet was recently diagnosed with LBD and Dave is working hard at adjusting to his increasing responsibilities. “I’m not there yet, but I’m working at it,” he said with a grin. But actually, he’s already doing better than many who've been at it much longer.

One of his first steps was to ask for help. Caregiving is not a single-person task. Like many men—and sadly, fewer women, Dave recognized that right away. When Bet was diagnosed with LBD, they were full-time RVers in Yuma, AZ. He called his daughter, Lynn, and asked her to come and help. She did and together they made it to the Pacific Northwest where Dave and Bet now live—still in an RV but with a permanent address. Lynn and her family live nearby and she helps with the caregiving to give her dad a break now and then.

Dave has learned to ask for help in other ways too—as with his experience with public restrooms in last week’s blog. Asking for help is often one of the most difficult things a caregiver can do—and one of the most important. However, once the need is known, most people are eager to help. During a discussion in an online support group, a couple of women mentioned that their church groups have rallied around, doing things like bringing casseroles, doing the laundry, sitting with loved ones so the caregiver can run errands and much more.

Of course, asking for help can boomerang. Lynn often calls Dave and offers to take her mom the next day. Dave has learned to “wait and see.” If Bet isn't up to going out, the experience wouldn't be pleasant for either Bet or her daughter. Lynn understands, but if it is someone who doesn't understand the changeable character of LBD, they can be discouraged and won’t offer again. In another situation, a woman in a support group shared that a neighbor has been willing to help in an emergency but asked not to be called one again. “She couldn't stand the sadness of it all,” the woman said. This can lead to feeling guilty for asking in the first place but don’t let that happen. Instead, feel sorry for the person who sees only the negatives.

People often don’t know that help is needed, or they don’t know how to help. Or, someone will offer to help and right then you can’t think of anything specific. Or you can think of things, but you don’t know if they fit what the person would want to do. Some people solve this by keeping a list of things that would help as they come up. Things like staying with your loved one while you run errands, coming in to do the vacuuming, bringing a casserole so you won’t have to cook, or even doing the dishes. Every caregiver will have a different list, of course.

For more about asking for help, read our books, A Caregiver’s Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, both available on our website,

For our special blog reader's price for these books, Click here.

Friday, August 1, 2014

Learning Curves

We are doing our usual summer exodus, escaping Arizona’s heat and traveling mostly in the Pacific Northwest. This year is all about learning curves. We traded Rex (our faithful old 1994 Rexhall motor home) in on a new, to us, 2008 Georgetown motor home. And now we are learning how to operate it! There was the “secret” switch that allowed the propane to flow—or not. There was the fridge that sometimes ran and sometimes didn’t; again, a “secret” switch that the repairman showed us how to work. New places to store items—where’s this? Who knows? Where’s that? Who knows? It will all work out, but it takes time—and patience.

A selfie with Jim, Dave and Helen
We’d just settled into our space in an RV park when Dave came over to talk to us. We both had Georgetowns—but then we found out that his wife, Betty (Bet) had LBD and so we ended up spending an afternoon visiting with the couple. They are experiencing a learning curve too. Learning how to deal with a degenerative disorder is not new to them—Bet has had PD for several years. They’d developed a happy lifestyle. Sold their big home and moved into a smaller home—the Georgetown—and started traveling to all the places on their “bucket list.” Got a tandem bike so Bet could exercise more easily. And generally adjusted their lives to fit Bet’s physical restrictions and keep her active longer.

But then she was diagnosed with LBD a few months ago. She doesn’t talk much anymore, choices are harder and judgment is poor now. She has hallucinations and Active Dreams. Bet is handling this fairly well (The apathy that accompanies LBD can actually be a blessing—things that once would have been devastating are now taken in stride.)

Dave, on the other hand, is having a hard time. He doesn’t mind helping her physically and he’s willing to make the decisions. But there are other issues that aren’t so easy. Take medications for instance. Like many LBD families, Dave and Bet have several doctors—a neurologist, a primary care physician and even a psychologist. The psychologist is actually a great idea for any couple dealing with the life stresses and changes that LBD brings.

As is often the case, these professionals have different views of what is needed for treatment. In this case, the psychologist suggested decreasing her Serequel dosage. Serequel IS a “black label” drug, meaning that people who use it are more likely to die sooner than people who don’t, usually from heart problems or pneumonia. It is also one of the most effective drugs for use with LBD symptoms like hallucinations and Active Dreams. Therefore, physicians and families must balance its advantages and disadvantages and choose what seems to be best for the individual situation.

“What does she take the Serequel for?” we asked.

“Hallucinations,” Dave replied. But even the bigger dose doesn’t seem to do much good.”

“Do they bother Bet?”

“No, they don’t seem to bother her much at all. It’s me they bother!”

“Hmm. Sounds like it’s you that needs the medication, then, not her! As long as hallucinations aren’t frightening or upsetting, it’s best to ignore them or just flow with them.”

Dave laughs and agrees that he is still in a learning curve and needs to work on what’s acceptable and what isn’t. Like us with our new RV, it all takes time and patience. Dave plans to talk to the neurologist soon about dropping the Serequel, at least for now. More about Dave and Bet next week!

For more about drugs and LBD, read our books, A Caregiver’s Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, both available on our website,

Friday, July 25, 2014

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.

Friday, July 18, 2014

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 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 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

Friday, July 11, 2014

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 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.