Finding Good Books about Lewy Body Dementia

Amazon sells many books about dementia and caregiving. But which ones are the best for the LBD caregiver? Our new website store, the LBD Book Corner, showcases just such books. Naturally, it starts out with our own Caregiver’s Guide to Lewy Body Dementia. Although this is still the only layman’s resource book specific to this disorder, there some great personal stories about living with LBD available now and you can find them in our store. We’ve also added some excellent books about caregiving in general and some about communicating with people who have dementia and dealing with acting out. All of the books in our store have at least four star reviews—usually five. Once you click on a book and go to Amazon, do check out its reviews. They tell you a lot about what the book is like.

When you go to Amazon via the LBD Book Corner and buy anything, they pay us a small commission. In this easy way, you can help us spread awareness about Lewy body dementia. Every cent goes into our working fund. Right now we are updating our “do-it-yourself” LBD training program for facilities, working on a video, maintaining this blog, writing a new book and planning our summer tour. Pretty good for a couple of “old retired folks,” huh?

And so, let’s help each other out. We’ll help you find the best LBD books and you help us spread the word. Just remember to go to Amazon.com via our website. It’s amazing what they sell, by the way-- books, appliances, clothes and on and on. And tell your family, neighbors and friends too. Thanks for the help! 

Find the LBD Book Corner at LBD tools.com. Just click on the Store tab at the top or bottom of the page--or follow any of the above links directly to the store.

Can You Tell Your Story --Briefly?

Here's a challenge for you!  Can you tell GE Healthcare how dementia (or any other neurological disorder) has touched your family in only 140 characters? They want stories “to inform their campaign from the grassroots.” Go to http://www.mindonlinecampaign.com/ and give it a try.  Let your story be heard. We did.

Jim wrote:  My wife had Lewy body dementia, was diagnosed with AD, and got acting-out drugs that made her life worse. Now I teach LBD awareness.

 (133 characters. Spaces and punctuation marks count!)

Helen wrote:  My sister had Parkinson’s but no dementia, had surgery, and began having scary delusions—a forerunner of Lewy body dementia.

(124 characters)

What’s your story?  Go submit it and then, come back and share it here.

Oh, and while you are at it, consider becoming a follower of our blog. We plan to discuss more about acting out in future blogs and you won't want to miss them. Thanks to all who read, follow or comment on our blog.

Tools for teaching and learning about Lewy Body Dementia

The Many Faces of Lewy Body Dementia

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

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

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

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

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

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

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

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

Using Behavior Management to Deal with Acting-Out

 In our March 2^nd blog, we talked about how LBD damages a person’s ability to control their behavior and how action follows closely behind feeling. Therefore, it is actually the caregiver’s behavior, and perhaps even more importantly, the caregiver's attitude, that must be managed/changed to decrease LBD related acting out. Here are some things you can do:

Take your time. Dementia slows everything down and it can be stressful to try to keep up.  Talk a little slower and give your loved one lots of time to answer. It might help to silently and slowly count to ten before expecting an answer. When helping your loved one bath or eat or anything else, don’t rush even if you are feeling time pressures. It really won’t take that much longer because your loved one will be more able to cooperate.

Practice feeling calm. As communication skills decrease, perceptions increase. Lewy folks pick up on tensions easily. However, their interpretation skills are flawed. They may identify hidden anger at a situation, for instance, as a rejection of them—and act out. And so, work on feeling (not just acting) relaxed when you are around your loved one. It helps them to stay calmer too.

 Have reasonable expectations. Don’t expect more than your loved one can give. As Lewy takes away their abilities, it becomes hurtful to challenge them to “do better,” or “try harder” or to remind they how easy a task “used to be.” And when Lewy folks feel hurt, or when they feel they've let you down,  they act out.....

 “It’s the disease talking, not my loved one. It’s Lewy, not…..” Make this your mantra. It will help you to ignore Lewy’s hurtful behavior and you will find it easier to maintain a loving, caring attitude.

And finally, use touch and an affectionate tone of voice. These elicit positive feelings and decreases acting out. Dementia does not take away the enjoyment of loving behaviors. A hug, a gentle pat, a soft, loving tone all decrease stress and thus, acting out.

Do you have any suggestions that have worked for you?

Dealing with Hallucinations and Delusions

 “I feel so helpless,” the LBD support group member said. “He has these terrible delusions and won’t let go of them. He makes me part of them, saying I’m bad, playing around on him. Naturally it does no good to tell him he’s wrong. I tried entering his reality, but that made him even madder.  What do I do?” 

People with dementia have lost their “thinking filter.” They go directly from feeling to action. As your loved one feels more and more helpless, fear of rejection becomes common. This is often expressed with the type of delusions the speaker described.  The fear becomes the delusion, and your distress only feeds it, increasing their stress, which in turn, increases behavior. Here are some suggestions that have worked for other caregivers:

First, some Don’ts:

•       Don’t try to reason. You can’t reason with someone whose thinking ability is impaired. This increase stress—yours, and in turn, his.
•            Don’t say they are wrong—that what they feel or see isn’t real. (How would feel to be told that what you believe with your whole being is not true?)
•       Don’t get angry, sarcastic or impatient.  This will only make the situation worse.

Now the Do’s:

•  If it is not causing your loved one distress, ignore it. (Hallucinations and delusions often cause more concern to the caregiver than they do to the loved one. Learn to live with the benign acting out.)
• LBD folks usually start out knowing their hallucinations or illusions aren’t real, even though they may be quite vivid. Therefore, early on, you may be able to verify that, for instance, the flashes of light aren’t a raging fire. But don’t push it. If your loved one is beyond reason, your “reassurance” will feel like an attack on their perceptions—and on them.
• If you possibly can, enter your loved one’s reality enough to distract or redirect the behavior.
• Try to distract with reminiscences about happier times in the past, when both of you felt good about each other. People with dementia have a short interest span and they operate on feelings. If you can get him to focus on reliving the positive, loving feelings, the negative feelings feeding the delusion may decrease.
•  Remember to de-stress the environment. (See last blog.)
• While LBD folks have more acting-out behaviors than people with other dementias, their sensitivity to acting-out drugs is so great that managing behavior via drugs may cause more problems than it solves. More about this in future blogs.