LEADER Principles: Delsuions, Accusations and Anger

This blog, which addresses accusations and extreme anger, continues to follow Mary as she learns to use the LEADER Principles of Interaction to deal with Frank’s dementia-related behaviors. If you haven’t read at least the first blog in this series, an overview of what LEADER stands for, it is a good idea to do so now.

Frank has always trusted me but now he had become very suspicious. He accuses me of wanting to run off to have an affair with the grocery clerk when we go shopping. He thinks the handyman we got to clean our gutters is just hanging around to get close to me when Frank is napping. And so on. When I try to defend myself, he gets very angry. In fact, anger seems to be very close to the surface for him with just about anything. -- Mary

Using the LEADER Principles:

Learn and Lead: Here is some information that Mary needs to know so that she can lead Frank away from his angry delusions of infidelity. 

• Frank’s brain is losing the ability to do complex (abstract) thinking tasks such as comparing, judging or prioritizing. He also can’t do concepts like time or distance.
• Frank’s illness makes him feel insecure, dependent and fearful of being left alone.
• When an event triggers a residual emotion such as that fear, the brain automatically provides a story, a prefabbed reason for the emotion. Normally, the next step is to use complex thinking to accept or reject this story.
• Without the ability to think complexly, Frank must accept this prefabbed story, this delusion, as is, as his only TRUTH. He can’t change it.
• Without complex thinking, Frank’s thinking is “all or nothing,” “is or isn’t.” Likewise, his emotions tend to be either unnoticed or extreme.
• Negative emotions are designed to be alarms, calls to action. They continue to blare until addressed. (See last week’s blog)

Emotions and Empathy. By empathizing with Frank, Mary

• Identifies his underlying emotions and accompanying theme and
• Relates with his fear of abandonment, his fear that she will leave him 
• Recognizes that without the concept of time, “will leave” means “leaving now.” 

Acceptance and Alliance. Mary:

• Quickly accepts the responsibility for his anger. “Oh, honey. You must feel awful. I’m so sorry.”
• Uses words and tones that show affection and caring, even in the face of Frank’s anger, to emphasize that she is with him and not against him.

Deflect and Do. An apology can work wonders to deflect anger! Mary's apology:

• Shows that she accepts Frank's complaint as real
• Decreases his negative feelings. (See previous blog on the magic of apologies.)
• Satisfies Frank's need for action

Entertainment and Enthusiasm. As soon as Frank’s anger decreases, Mary can enthusiastically suggest a distraction—something that will entertain Frank and refocus Frank’s attention away from his negative emotions.

Residual Emotions and Response. Frank will likely forget the incident with the handyman, but his fears remain and can be triggered again and again. The quicker Mary can respond with an apology and then a distraction, the weaker those fears will be.

Next week’s blog will be about dealing with hallucinations.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Lewy Body Word for 10-20: Delusions

Delusions: Dramas brought about by faulty thinking often combined with residual emotions. Delusions show up early with LBD because thinking fades earlier too.

Dave see his wife on the phone:

• This triggers his residual fear of abandonment. 
• To make sense of this fear, his dementia-damaged-brain offers the delusion that that she is talking to her lover. 
• Now, also angry, he accuses her.
• When she tries to explain, he becomes even angrier.

Considering the validity of a thought requires abstract thinking. Without it, the delusion becomes Dave's truth. Consider how you would feel if someone tried to tell you that something was not the way you knew at the very core of your being that it was. This is how strong delusions are. Explaining, defending or arguing DO NOT work.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Be a Better Storyteller

Our 3 for 2 book special honoring the 2016 World Parkinson's Congress. Good until Nov, 1, 2016.

Buy Now!

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Be a Better Storyteller

In Eric Barker’s blog, Neuroscience Of Mindfulness: How To Make Your Mind Happy, he talks about how our brain is divided into two parts: The right brain, which collects facts, and the left brain, which interprets these facts. Thus, your right brain sees a person glance at their watch. Your left brain tells you, “She’s bored” or even more likely, “I’m boring her.”

We all do this. But in most cases, we also check our interpretations against facts.“Oh, yes, she has an important appointment and needs not to be late.” If I have dementia, I’m not going to be able to do this. I accept my left brain’s interpretation without question. I live in the moment and can’t apply such information, even if I remember it, to what’s happening right now.

Eric Barker suggests that we become aware of how our brains work…that we understand how creative, and often incorrect, the left brain can be in its interpretation of the facts that the right brain collects. Well, that’s fine for the average person, but it doesn’t work for me if I have dementia. I can’t do that. I’m stuck with what my left brain tells me. So how can you help me avoid this?

First, if I come to a conclusion, flow with it. I’m not going to change. Explaining the facts, arguing or defending isn’t going to work. Accept, agree and deflect or distract. But maybe there are some things you can do to help me avoid some of these conclusions before they happen.

Eric Barker suggests that you help the left brain build better stories. Now, there’s a thought! What can you do to help me build better, more positive stories?

Make me comfortable. As discussed in the March 12, 2016 blog, Emotions, it is human nature to pay more attention to negative messages. They are more intense and get our attention more easily. We need them to motivate us to move away from danger, or often, just from being uncomfortable. Being uncomfortable and danger are on the same plane, only danger is just more intense. Dementia takes away my ability to judge intensiveness, and so I respond similarly to both. The more comfortable you can help me to be the better I will react to my environment, i.e., the more positively I will interpret what my right brain feeds me.

Improve my self-esteem. As my condition worsens, as my ability to think, remember, or do things for myself diminishes, so does my self-esteem. Thus, I’m more likely to think I’m boring, or that I’m not good enough for you to hang around, or that I’m too much trouble, or…. To counteract this, use lots of physical reassurance on a regular basis: hugs, kisses, anything you can do or say to show me that I’m important to you. This won’t work during an event when I’m convinced of something negative…then I’m stuck. Your actions must happen at times when I can accept them at face value, not as an avoidance of my, to me, accurate statements.

Help me to feel useful. The better I feel about my contributions to our daily life, the happier I will be and the fewer negative emotions my left brain will have to build into its stories. Look around. What can I do? It doesn’t matter if I can do it well. Can I help with the dishes? Fold the laundry? Sweep the floor. I don’t need to hear that it is good for me to be keeping busy. I need to hear that I’m helping you, making your job easier. OK, so maybe I’m not. But that’s what I need to hear. So, if you want me to feel useful, tell me that!

Help me to feel creative. Creativity is very uplifting, and adds all kinds of positive feelings. What did I do before dementia? Was I a photographer? An artist? A musician? A seamstress? A carpenter? A cook? I don’t me professionally, but how did I express my creativity? What was important to me? Family? Work? Hobbies like dancing, or golf or knitting? How can you help me to continue to do some form of this same thing? Even looking at photo albums can be helpful if that is all I can still do. Ask questions about the photos, but don’t push for names, etc. or anything that makes me agitated. Music can be very helpful. So can art work like finger painting. Use your own creativity to come up with ideas and try them out.

None of these suggestions are likely to keep my left brain from telling negative stories altogether. But they may help enough that I may need less medication…and that’s a real plus!

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Fluctuating Cognition: A Blessing and a Bane

One way that LBD differs from other dementias, is the occasional window of clarity, where our loved ones return from their journey into the confusion of LBD and appear to be very similar to their old selves…alert, verbal, charming, compassionate, humorous, knowledgeable. We all look forward to these times, glory in them when they arrive and mourn for them when they leave—usually without warning and far too soon. In A Caregiver’s Guide to Lewy Body Dementia, a poem by Lynn Davis says it all:

An Old Flame

Yesterday I had a chance encounter

With an old flame.

He was every bit as charming as I remember,

And I was so glad to see him.

We had dinner together and talked

About everything and nothing at all.

It made me feel young again

And yes, I even flirted a little.

It was just so nice

To spend an evening being “normal.”

I don’t recall exactly when he left.

I just looked up and John was gone

And Lewy had returned.

But there’s a flip side. It’s called “Showtime.” That’s when our loved ones are alert in the presence of someone other than ourselves…often someone that really needs to see them the way they usually are. Over and over we hear the story of LBD silenced loved ones shuffling up to the doctor’s office, barely able to walk. Then as soon as they see the doctor, their posture improves, the shuffling becomes a walk and they start talking in full, clear sentences. A Lewy-savvy doctor understands Showtime and plans for it. An initial visit should last long enough to give the Showtime a chance to disappear—a couple of hours or so. Some doctors ask for daily emails that go in the chart and show an ongoing record of behavior. Others may ask you to keep a daily journal and bring it with you.

And there are the family visits. On one hand, it is wonderful that the family—and the caregiver as well—can enjoy your loved one at his best. However, if you have been telling family about problems, asking for help, or even considering residential placement, they may think you are over-reacting. “He doesn’t seem that bad to me,” is the understandable response.

There’s the grown child who prefers not to entertain the idea that their parent might have a disorder like LBD. They see the Showtime and ignore anything else. “Dad’s slowing down some, but he looks all right to me,” they say. Again, time may be the answer. Ask that family plan longer visits; long enough to outlast the Showtime. Caregivers have also used audio recorders or video cameras to record their loved one’s behaviors for unbelieving family—and the doctors too.

Blended families can be even trickier. A grown step-child may blame the step-parent. “Dad’s fine. If he’s worse when we aren’t here, then it’s obvious that my stepmother is the one causing the trouble.”  I just finished reading Going Mad, by Carol Pendergrass. This is the ultimate horror story of LBD and a blended family. Whether you have a blended family or not, read it and be sure to take all the legal steps she recommends—early in your LBD journey.

When fluctuating cognition and delusions combine, life gets even more surreal. Remember, delusions are your loved one’s worst fears—seen by them as fact. (See my March 21^st and April 21st blogs.)  Harry tells his grown son, Clay, that his wife of ten years is trying to poison him because she has a lover. Harry has never been one to make things up and except that he seems genuinely frightened, he is acting normal—asking about the grandchildren, Clay’s wife, etc.  And so why wouldn’t Clay believe him? Oh, yes, there’s that diagnosis of Lewy body dementia—but that’s a lot of b.s. anyway—probably something else his stepmother has made up.  The answer here is to somehow educate Harry about LBD and get him to believe that he can help his father more by decreasing the stress in his life than by adding to the drama. If you have a Lewy-savvy doctor, family office visits might help. Harry will probably be more able to accept the doctor’s words than his step-mother's—especially if some hope and suggestions for things that Harry can do to help come with it.

And that’s the bottom line: education. The more Lewy-savvy your doctor is, and the more Lewy-savvy your family is, the less stressed your loved one will be. And lower stress means more Good Times for all of you to enjoy.

Delusions of Unfaithfulness

Of all the questions we get about LBD, this is the most difficult. We addressed the issue in our March 2nd blog, but it deserves more attention.  Mary told us, “Art accuses me of meeting other men. A half-hour trip to the grocery store is a tryst with my lover. A chat on the phone with my daughter is phone sex.” Mary’s denials only make Art more certain of her desertion. She is at her wit’s end.

As  dementia increases Art’s feelings of inadequacy, he fears that Mary will no longer view him as a desirable companion. Because Lewy has damaged Art's thinking filters, what he FEARS is what he accepts as FACT. Thus in  Art’s mind, Mary IS deserting him. The more intense the fear, the stronger the delusion.

It’s easy to say what not to do about such behavior: Don’t try to reason with your loved one. That will only cause more agitated. He/she hears your claim of innocence as a denial of their fear.

It’s less easy to say what to do. You need to find ways to:

a)      Increase your loved one’s thinking filter so he can process his emotion. If he does not jump directly from feeling to fact, it will be easier for him to accept that you are not deserting him.
Dementia drugs, such as Exelon or Aricept, are fairly safe and often help to control behavior. That is, they may improve the thinking filter and decrease his delusions. Even if your loved one’s doctor doesn’t think  cognition drugs are needed yet, you might ask if they could be started with the goal of decreasing acting-out.

b)      Lower stress. Few of us function well when we are highly stressed. However, LBD both adds stress and lowers its threshold. Acting-out (in this case, delusions) increases with stress and decreases when stress is decreased.
Chapter 9 in  A Caregiver’s Guide to Lewy Body Dementia and our March 15^th blog speak to dealing with environmental and health issues to decrease stress.  Read these and use them as guides for eliminating things in your loved one’s environment that add stress.

c)      Substitute positive feelings for negative ones. The blessing of dementia is that it makes it difficult to hold two feeling/thoughts at the same time. Feelings, not thoughts or beliefs must be the target.
Perhaps the most effective intervention of all is to distract your loved one with positive feelings and happy thoughts. The stronger the happy feelings the more effective they will be. This takes some planning and preparation. Think about an event when you were having a wonderful time together—when your loved one felt secure in your love. A special vacation, your wedding, etc…. Then, gather together some props: photos, music, items with special meaning, etc.  When your loved one begins to act out, say something like, “Oh, honey, look what I found. Didn’t we look sweet in these photos?” Once you have his/her attention, start talking with the goal of increasing the happy feelings. Remembrances of happy feelings in the past will usually work better than talking about present feelings. Don’t worry if it doesn’t work the first time. This is a learning process. Next time, try again, using what worked and changing what didn’t. Your loved one likely won’t remember what you did or said anyway. It's a new event each time.

d)     Add a buffer so that his feelings aren’t so intense. Since the strength of the delusion depends on the intensity of the feeling, this may decrease or even end the acting-out.
If none of the above tactics are enough, you and your doctor may want to consider another drug, perhaps one of the more Lewy-safe anti-depressants. And, while we hate to even suggest behavior management drugs, they do have their place. Seroquel, for instance, can be quite effective with few apparent side effects. However, research has shown that dementia patients who take even second tier anti-psychotics like Seroquel risk an earlier death than those who do not take these drugs. That said, there may come a time when you choose to balance quality of life against length of life.

e)      Consider residential care. If safety or extreme caregiver stress becomes an issue, this may be the best, if unwelcome, answer.
This is a step that few caregivers want to take, especially while their loved one is physically able. However, with Lewy body disorders, acting-out behaviors sometimes start before other symptoms and advance to being too difficult to handle at home before the physical load does. Sometimes, even when all of the above steps have been tried, the acting out will continue. At such times, caregivers must recognize that anything that puts them at risk also puts their loved one at risk. Thus, if they become so stressed out that they cannot function well or if their loved one’s acting out becomes physically dangerous, placement in a Lewy-savvy residential facility may be the answer.  Caregivers who have fought this step but finally made it, often say, “I’m a better caregiver now. I can give my loved one so much more of me, now that I have regular time to get away and regroup.”

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.

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. 

Delusional Misidentification

Delusional mis-identification is a common symptom for our LBD loved ones. According to Carrah L. Martin, 2009, these delusions, each with its own name, can be about times, places, objects, person, including self, and even body parts. Jo’s mother believed that Jo was an imposter who had replaced her real daughter (Capgras Syndrome). Marie shared that her husband insisted that his home was the imposter (reduplicative para-amnesia). As caregivers, knowing a type of delusion's particular name is less important than knowing how to deal with it.

Judy said she didn’t feel she could go along with her spouse’s delusions. “Years ago, I promised him I’d never tell him a lie.” In the LBDA’s July Lewy Body Digest, an excerpt from A Caregiver’s Guide to Lewy Body Dementia talks about making and keeping promises to our LBD loved ones. The bottom line is “Never make a promise you can’t keep.” Of course, after the fact, you may discover that what you thought was an easily kept promise is now harmful to your loved one.

When LBD takes away our loved one’s ability to reason, the rules change. Imagine how you would feel if the most important person in your life refused to accept what you know with every part of your being is true. You’d be hurt, right? And when someone with LBD hurts, they tend to act out, which at best, is uncomfortable for both you and your loved one, and may at times be quite unsafe. If you can show your loved ones that you are working WITH them to find a solution to their very real and quite distressing problem, they will feel supported and there will be fewer acting out behaviors.

Judy is not lying when she accepts her husband’s delusion enough to move him in a more comfortable direction. She is joining his reality. You don’t have to agree directly. Jo can tell her mother, “All right, Mrs. K., I’m leaving. Jo will be back soon.” And Marie might say, “You might as well take a nap while we're here. I’ll stay awake and make sure you're safe.” Or even, “While you're resting, I’ll get us back home.” No specific strategy is guaranteed to work, but generating the feeling that “we are in this together” will go a long ways towards calming your loved one.