LEADER Principles: Hallucinations

This fourth in the LEADER Principles of Interaction series is about hallucinations. Hallucination are often the among the least stressful LBD-related behaviors--at least for your loved one. Mary and Frank are back to share their experiences using the LEADER Principles.

Frank started hallucinating well before he had other LBD symptoms. I would just kindly tell him, “Yes, I know you see them, I can’t. They aren’t real—they’re a symptom of your Parkinson’s.” He’d nod and that would be the end of it. Of course, sometimes, he liked to share his “visions” with me because, he said, they were so entertaining. We’d laugh but we both knew that what he was wasn’t real. But that has changed. He doesn’t believe me when I tell him I can’t see what he sees so clearly. – Mary

Learn and Lead

Learn: Lewy bodies that start in a person’s movement control center cause Parkinson’s but in time, these damaged proteins tend to migrate to other areas of the brain. When they migrated to Frank’s visual perception center, he:

• Experienced hallucinations--seeing things that aren’t really there but his thinking abilities were not affected
• Could accept feedback and make judgements about the reality of what he sees.

When Lewy bodies spread into the cognitive areas of Frank’s brain,

• His thinking fade, leaving only basic thinking skills
• He can now only accept what his brain receives first, the hallucination, as real.
• This may also be combined with an emotion and a prefabbed story, a delusion.

These hallucinations may be less stressful for Frank than Mary, who sees them as a step towards dementia. However, by monitoring and changing her behavior, she can lead Frank—and herself—to a more comfortable place for both of them.

Emotions and Empathy. Most hallucinations are benign, that is they don’t trigger strong emotions. The problem often lies with the care partner:

• If Mary feels distressed, her distress will be picked up by Frank as negativity and mirrored as behavior fired by negative emotions
• If Mary tries to do as she’s done in the past and explain away the hallucinations, Frank will feel insulted and will express this with behavior fired by his negative emotions.

Mary can change this by:

• Being careful not to express negative feelings in Frank’s presence
• Empathizing with Frank and thinking of how she’d feel if she firmly believed something but wasn’t given credit for that belief.

Acceptance and Alliance. For her own peace of mind, Mary must

• accept that Frank can no longer accept her explanations. (This makes the empathy possible!)
• Agree with what he sees. Mary doesn’t have to BELIEVE, she just needs to play along, as she might at a child’s tea party.
• Let it be unless the hallucination is unsettling to Frank. She might just nod when Frank tells her Aunt Jane is napping on the sofa, for example. She doesn’t have to try to wake Aunt Jane up or have a conversation with her.
• Join Frank’s reality if necessary, to deal with a stressful hallucination.

Deflect and Do. If the hallucination is stressful to Frank:

• Mary’s acceptance of what he is experiencing as real will likely deflect much of Frank’s stress. He isn’t having to convince her it is real and he has her support.
• Mary can now do something within Frank’s reality to make the hallucination go away. For example, Mary might tell the “bothersome kids” it’s time to go home now and physically usher them out the door.

Entertainment and Enthusiasm. As with any other unwanted behavior, distraction will help Frank to move further away from the experience so that it isn’t retriggered. Distractions need to be:

• Something that Frank enjoys.
• Presented with a positive and enthusiastic attitude that Frank can mirror.

Residual Emotions and Response. These may not be as big an issue with benign hallucinations as they are with other behavior. With unsettling hallucinations, including those Mary doesn’t accept as Frank’s reality:

• emotions generated by the event will be remembered even when the event isn’t. These residual emotions will then be triggered by a new event.
• The quicker Mary can accept Frank’s hallucinations as his reality and deflect any unsettling emotions, the weaker the residual emotions will be when they appear again.

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.

Hallucinations, Pt 2: Management

This is the second in a series of three blogs about hallucinations based on Tanis Ferman's presentation at the 2019 ILBD Conference.

First, let me repeat that hallucinations only need management if they are distressing to your loved one. If they are distressing to you, this means that you need to find a way to accept your loved one's behaviors. Otherwise, he/she will pick up on your negative emotions and mirror them, with a likely increase in hallucinations or worse, in their intensity.

However, if a hallucination is stressful, there are some ways to help your loved one de-stress. This week, we are focusing on what Tanis calls "solution-focused management," which involves identifying patterns and triggers.

Once you know about the trigger, it is often easy to solve the problem. Even more important, it is often possible to prevent the behavior by removing or avoiding the trigger. For example, Iris, tells about her husband Eric, a Vietnam veteran, who becomes violent when he "sees" war battles and delusionally believes that he's involved.

How is this is a problem?

• It's a problem for Iris because she's afraid she'll be hit.
• It's a problem for Eric because he thinks he's being attacked by the enemy.

When does it happen?

• It is most often the result of a dream that wakes Eric up acting out what he had been dreaming.

Where does it happen?

• In bed.

What happens before and after?

• They often happen after a physically exciting scene on TV. It doesn't have to be about war. The last time, it was a football game.
• After Eric wakes up fighting, Iris leaves the bed.

Who is around?

• Usually only Iris. But it was triggered once, when an old buddy showed up and they got to reminiscing.

These answers tells Iris that she needs to monitor Eric's TV watching and ask his buddies to be careful what they talk about because both of these appear to be triggers. She also probably needs to find a different bed to sleep in. Emotion-based solutions may not be helpful with this type of issue because, with almost immediate violence involved, Iris will be less able to get past the negative emotions to where Eric can hear her. Her best solution is to limit the possible triggers and make sure she is safe.

Likely Triggers

• Physical: Medications, dehydration, infection, not enough  exercise, pain, constipation, sleepiness, alcohol, mood.
• Environment: Clutter, lighting, cues (TV), move misperceived objects
• Task demands: Task too hard, causing stress, or too easy, causing boredom.
• Fluctuations: Not actually triggers, but if you are aware of your loved one's pattern of fluctuations, you can usually choose activity times for when he/she is more aware which will decrease stress and increase awareness.

Next week's blog will be about dealing with hallucinations via what Tanis calls emotion and communication focused management.

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.

Hallucinations Pt. 3: Emotion and Communication

This last blog in this series about hallucinations combines what Tanis Ferman talked about in her 2019 IDLB Conference presentation with some of the information from our own book, Responsive Dementia Care: Fewer Behaviors Fewer Drugs.

Managing difficult hallucinations is much like managing any other difficult behavior.

Emotion-focused management:

• Be aware of your loved one's feelings. "You seem ___________ (frustrated, aggravated, scared....)" These negative feelings are very strong. In fact, since your loved one probably has only one intensity, they are likely to be catastrophic. Therefore, they must be addressed before your loved one can pay attention to anything else.
• When you truly listen and make an effort to identify the feelings involved, your loved one will feel heard, taken seriously and validated. With their negative feeling addressed, they can start to relax.
• In addition, if you understand the feelings involved, this may help you address the situation itself. Remember anger is a secondary feeling. You are looking for the underlying feeling that is driving the anger or fear. Often this comes from residual feelings like a fear of abandonment or feelings of loss.

Communication-focused Management:

DO's

• Do listen for feelings. These are going to tell you a lot more than the words do.
• Do ask about it. Show some interest. Let your loved one know you are listening. (Remember to ask easy to answer questions, with no more than two well-identified choices and no open-ended questions.
• Do make empathy statements (that's frustrating, I understand)
• Do apologize. Yes! Apologize. If your loved one is accusing you of something, think about how you'd feel if the shoe were on the other foot and YOU believed someone had done to you what your loved one believes you've done. Then apologize the way you'd want to be apologized to.
• Do respond positively (Great idea! Good job!) Your positivity will be mirrored by your loved one...but only if you've dealt with the negatives first.
• Do monitor your non-verbals. Your loved one will believe your body language before your words. (Actually we all do!)
• Do go along to get along. Go with the flow, think of it as a play in which you have a part. You have to follow your loved one's lead but you can move the action into a more comfortable direction as long as you are both on the same wavelength--in the same reality.
• Do enlist the help of others. Ask for help, go to a support group. Share your concerns. There will be someone there who's had the same issues and may have found a way to deal with them that you haven't tried.

DON'TS

• Don't argue. This triggers those demanding negative emotions and just makes things worse.
• Don't quiz. Ask interested questions but don't badger. This makes your loved one feel defensive...and the negatives show up again.
• Don't correct. This makes your loved one feel insulted. In his reality, he is not wrong and that's the only reality that counts.
• Don't give too many details. This will make your loved one feel confused and inadequate.
• Don't defend. This will make your loved one feel lied to. In his reality, you did what he says you did, thus your attempts at defense are insulting lies.

If none of this works, talk to the doctor about drug management with something like Sequel. Remember that people living with LBD are more sensitive to most drugs than the average senior, thus starting with very low doses is important. But if the low does doesn't work, ask the doctor to increase it until it does--or it causes unwanted side effects.

Finally, always remember that your stress will be picked up by your loved one and reflected back as behaviors...hallucinations, angry accusations, and so on. And so take care of yourself. Get enough rest and some "me time." The better you take care of yourself, the better your loved one will act!

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.

Hallucinations, Pt. 1: What Are They?

Last week's blog was about understanding and managing fluctuations, from a presentation by a mentor of ours, Tanis Ferman, of the Jackson Florida branch of the Mayo Clinic. This next series of blogs are about the other part of her presentation at the 2019 IDLB Conference, understanding and managing hallucinations. I've added some information of our own as we go along too.

Visual hallucinations (VH), or perceived images of people, animals, objects occur in 60-75% of LBD. These images tend to be quite vivid and real appearing. Early in the disease journey, a person can often accept feedback from a care partner that the images aren't real. This is very common in late PD.

At one PD group Fred told us he saw "Little army men." He knew they weren't real because his wife didn't see them. "But, he said, they are fascinating. I enjoy them." However, as Fred's disease progresses and he loses the abstract thinking ability to compare, he must accept only what his own brain tells him. Then his little army men will be real to him.

That's when delusions (false beliefs) related to the image become common. These often become very involved. A friend of our told of her husband, Bill, who "saw" wolves in the back of their pickup and had many stories about their lives there. As with Bill, the hallucination happens and then the brain spins a story to make sense of it--to him if not to anyone else!

Auditory hallucinations are less common, occuring in about 30% of those living with LBD. These include sounds such as a doorbell, phone ring, music or muffled conversations.
Presence hallucinations are the feeling that somebody is present but just out of sight, behind or to the side perhaps. These occur but are even less common than auditory hallucinations.

Visual misperceptions (illusions) are very common in LBD. This is where an object is mistaken for something else. While these can contribute to delusions, they may also be easier to debunk. For example, a person may be able to accept that the dog they saw on the sofa was really a wadded up blanket that looked like a dog if they can touch it and shake the blanket out.

Visual misidentifications are where a person sees a person, object or location and identifies it as a duplicate or imposter. When the misidentification involves a person, usually someone close to the person, it is called Capgras syndrome. Recent research has found that Capgras is a visual dysfunction. If your loved one believes you are a look-alike imposter, try going out of the room and start talking before you come back into his sight. He will hear your voice and identify it as yours. Then when you enter, you are who he expects to see and who he does "see."

These visual symptoms all occur due to neuron loss in the areas of the brain that control sensory, especially visual, perception. They may also be partially due to an intrusion of dream sleep into wakefulness. Dan, a support group member tells about his deceased wife, Anita. She used wake up thinking someone was ringing the doorbell. Dan would dutifully get up and answer the door but no one was ever there.

Anita started out dreaming about the doorbell. The "sound" woke her up and became an auditory hallucination. Since Anita's thinking ability was diminished she believed the doorbells were real.
Insight, or the ability to tell the difference between reality and hallucinations, is affected when the thinking centers of the brain and their connections to the visual centers begin to fail.

Many hallucinations don't need management at all. If they are not distressing your loved one or making you unsafe, let them be. However, your loved one's reaction to their hallucination can often be stressful, to them or to you or most likely both of you.

Hallucinations can trigger delusional accusations or paranoid worries fostered by negative emotions such as ongoing fears such as a fear of abandonment or loss. In addition, any negative response is apt to be catastrophic, since the dementia-damaged brain doesn't do levels of intensity. Emotions tend to be either very intense or absent.

Next week's blog addresses some ways to manage these more difficult events.

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 10-21: Hallucinations

Hallucinations: seeing, hearing or feeling something that isn't really there.

With LBD: Well formed visual hallucinations often appear before thinking abilities fade.
With Parkinson's: Similar hallucinations appear well after motor symptoms but while thinking is still intact.

• At first, the person believes the care partner's explanation that the hallucinations are simple Lewy playing tricks again. Earl said, "I know the little army men aren't real but they are fascinating."
• As abstract thinking fades, Earl will begin to believe his little men are real. As with delusions, this belief cannot be changed.

With other dementias: Hallucinations can occur, usually after thinking abilities fade.

Delusions: Once thinking fades, hallucinations are often combined with delusions into elaborate dramas that the person truly believes.

Best reaction: Empathetic communication (tomorrow's blog)

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.

Dealing with BPSD: Hallucinations

Last week's blog was about how to defuse negative emotions. That's an important basis for dealing with most behavioral and psychological symptoms of dementia (BPSDs).

• These emotions often drive the resulting acting-out behaviors such as aggression or withdrawal.
• Without these energy-robbing feelings, the PlwD has more personal reserves for dealing with the dementia symptoms themselves, such as hallucinations.

There are also ways to deal with each symptom as well. Today's symptom is hallucinations.

My dad, Hank, has LBD. Lately, he's been having a lot of hallucinations. Most of them are harmless and manageable--workmen in his house or on his property. But some aren't. How do I convince him that there really isn't a man in his house holding a gun to his head? He thinks I'm nuts when I tell him it isn't real. Someone suggested that I use a spray bottle to get rid of the hallucinations, but that didn't work. Dad just thought it was silly. His doctor suggested Namenda. I plan to research Abilify too. -- Maude

LBD tends to attack a person's thinking skills even before it affects memory. When Hank first started getting hallucinations, he may have known that they weren't real. But as his ability to think abstractly fades, he can no longer tell the difference between hallucinations and reality. They are HIS reality and he is stuck with them.The more Maude tries to convince him of HER reality, the more frustrated, hurt, or angry he will get. (Think about how you'd feel if someone tried to convince you that you didn't really live in your home. Sounds absurd, doesn't it? Insulting, even, for them to even think they could do this. Well, that's how Maude's father feels when she tries to spray away his reality. "How silly and insulting!" he thinks. Maude has tried some things that don't work well.

These is what you can do:

• Ask if the people are bothering your loved one. If they aren't, they are not the one with problem. YOU are. Relax. Let it go. Learn to deal with the hallucinations by accepting them as a part of the disease. (See previous blogs on hallucinations and delusions.)

• Be willing to join the PlwD's reality and "play along" enough to get rid of an annoying or frightening hallucination. (See previous blogs on improv theater.) Do more or less what you would do to get rid of the situation if it were real. For instance, Maude can tell the man to take his gun and leave. Stand at the door and usher him out. Close the door. (Understand that this just takes care of this time. The "man with a gun" can show up again. Even if you took the gun away, her dad wouldn't remember that.)

• Do consider dementia drugs like Aricept, Exelon, Razadyne and Namenda. They address more than just cognition. If your father also has Parkinson's, ask his doctor to review his PD drugs. They can also cause hallucinations. But your accepting attitude will help more than anything.

• Be careful with antipsychotics like Abilify. Research shows that while it is not as dangerous for a PlwD as Haldol, it is more dangerous than Seroquel and about as dangerous as Resperdal, Zyprexa and Geodon. All of these drugs except Haldol are "second generation" antipsychotics often prescribed for BPSDs. All of them should be monitored very carefully to assure that they don't cause more problems than they solve. (reference)

• Do take care of yourself. The PlwD mirrors your feelings. A calm, healthy, happy caregiver means fewer dementia symptoms, including hallucinations. (See previous blogs on dealing with emotions and on caregiver care.)

Future blogs about dealing with BPSD will be on shadowing and being in the moment,

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes 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.

Lewy Body Dementia Precursors

Last week the blog was about how dementia is a symptom of many different cognitive, or mental, dysfunctions, with the main players being Alzheimer's, Lewy body, Vascular and Frontotemporal dementia. Readers also learned that dementias like to hang out together and that even if a person is diagnosed with one kind, an autopsy will likely show that there was at least one more.

This week's blog is about the symptoms leading up to Lewy body dementia.

Like Alzheimer's disease (AD), LBD is caused by normal proteins that become damaged, and then, cause more damage. In the case of LBD, it is the alpha-synuclein proteins that "misfold" into Lewy bodies. These round sticky masses then attack certain neurotransmitters, the chemicals that pass information from neuron to neuron. While AD proteins tend to stay in the cerebral cortex, Lewy bodies migrate, and can spread throughout the nervous system. Thus, they cause a great variety of symptoms. What these symptoms are depends on where in the body the Lewy bodies are located.
One question we often hear is "What causes the proteins to misfold and turn into Lewy bodies?" Well, the answer to that appears to be two-fold. First, a person has to have the genetic tendency. And then they have to be exposed to an environmental toxin. (See the 11/7/14 blog, Genes and Environment, for a more thorough answer to this question. I'll also be talking about it again in a future blog about something called "telomeres.")

Chronic Constipation. Annie, Jim Whitworth's first wife, and his original reason for being on this journey, had chronic constipation as a young woman. Her more conventional LBD symptoms of hallucinations and poor thinking skills didn't appear for almost a half century later. One thinks of LBD being a "brain disease" but it is more a "nerve" disease. Since there are more nerves in the gut than anywhere else in the body, except for the brain, it makes sense that one of the first places Lewy bodies may show up is in the intestinal tract, which isn't nearly so well protected.

REM Sleep Behavior Disorder (RBD). The chemical switch that prevents movement during sleep is situated on the brainstem in the pons. When Lewy bodies find their way here, they damage the switch and people act out their dreams. They can be very active, hence the very accurate description of "Active Dreams." About 50% of those with RBD go on to develop LBD eventually. See our 11/02/12 blog, Active Dreams, for more about RBD.

Parkinson's disease (PD). PD is a movement disorder that occurs when Lewy bodies in the midbrain attack dopamine, a neurotransmitter instrumental in fine motor control. From 60% to 80% of those with PD will eventually go on to experience dementia symptoms. Many people with PD also have Chronic Constipation and or RBD. The more of these "precursor symptoms" a person has, the more likely dementia is. See our books (below) for more about PD.

Hallucinations. When the Lewy bodies travel a little further into the brain, they find the cerebellum, which has a lot to do with making sense out of what a person sees. Here, Lewy bodies interfere with this process and cause a person to hallucinate, or see (or feel or hear) things that aren't really there. These hallucinations can appear very realistic. Even so, a person can usually understand that although they see the little bugs or green men or lady on the sofa, no one else does--at first. Then as the Lewy bodies move into the thought processing parts of the brain, they begin to believe their hallucinations are real. See our books (below) for more about hallucinations.

Mild Cognitive Impairment (MCI). The Lewy bodies have found the cerebral cortex, the area of the brain where the ability to think clearly and do tasks is stored, causing poor decisions or the fumbling of familiar tasks (MCI-LB). If Alzheimer's is involved, MCI may start with memory loss (MCI-AD). In either case, a person can still function and take care of themselves.

Dementia: MCI becomes "dementia" when it interferes with a person's ability to provide adequate and safe self-care. In the case of AD, symptoms usually have to do with memory about things: words, dates, events and such. With LBD, they have more to do with task memory: the ability to perform once easy tasks. Lewy bodies also mess with one's thinking skills and delusions become common. People with hallucinations now believe they are real.

Now, the thing to remember is that with LBD nothing is firm. Every person experiences LBD differently. Any one of these symptoms can occur without the other, or in almost any order, although at least one of them usually occurs prior to the dementia. Lewy bodies tend to travel in the way I've described, but they often don't. They may skip a symptom, such as PD, and move on to the next, or they may travel in a different order. In fact, about 50% of the time, a person with Lewy body dementia will NOT have experienced PD first, although eventually, they will usually have some motor issues. When this happens, it is called Dementia with Lewy bodies.

For a much more involved description of all of the above read our books (below).

Next week's blog will be more about the two types of Lewy body dementia...the kind that starts with PD and the kind that doesn't.

Acronyms:
LBD: Lewy body dementia
AD: Alzheimer's disease
RBD: REM sleep behavior disorder
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
MCI-AD: the form of MCI that precedes AD
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.

Next week's blog will be more about the two types of Lewy body dementia...the kind that starts with PD and the kind that doesn't.

Accepting Hallucinations

Last week the blog was about how caregivers can reduce stress by accepting their loved one's reality and allowing them to feel heard. This is no small thing. This week, we expand on this. Please go back and read the last two week's blogs if you haven't already. It's important that you understand how fully a person with LBD (PwLBD) is locked into their own reality.

This week, George is still here. He is a stand in for your loved one with LBD. As you read this, use your loved one's name instead of his. George "sees" things. Things you can't see, but he can and he knows beyond a doubt they are real. Mostly, he sees "little people." Others with LBD see dogs, children, or even bugs. You call these "hallucinations" but George doesn't that. It implies that what he sees isn't real. Call them "little people" like he does. Then he knows you accept his reality and that's important to him. Actually, he isn't that much different from any of us that way. We all like to know that the people we care about accept who we are and what we say.

When George's little people first showed up, he was still able to reason well enough that he could test for reality. He understood that when he saw the little people but no one else did, then the little people weren't real. It's been over three years now however, and Lewy bodies have damaged his ability to reason and he can't do that anymore. Now he accepts the initial information as fact. The little people he "sees" are as real to him as the chair you are sitting on is to you.

Some PwLBD, especially those who've had traumatic experiences, will see scary things, but mostly what is seen is benign. They might be fascinating, fun or, like George's little people, just friendly companions. Some people hear sounds like telephones, but they don't hear voices like a person with schizophrenia does. George's little people don't upset him, but when you try to convince him that they aren't real, then that does.

Actually, George's "seeing" is more likely to upset you than him. Your distress is evidence of denial, an early step in the grieving process. Denial leads you to try to get you to accept your reality. When you get it that he can't, they you advance to sadness. It is normal for you to grieve as you see George's unwelcome changes. But it is not helpful to do it in front of him. He will mirror your distress and his symptoms will increase. Instead, step back, even leave the room if you must. Then when you can, return and give him the support he needs. This does not mean you shouldn't grieve. Just do it later, when he's not around.

You don't have to pretend to "see" what he does, but you do have to accept that his little people are very real to him. If you don't; if you try to convince him of your reality, he'll respond by feeling a lot of negative emotions like frustration and anger--intense emotions that make the situation even worse. The more upset he feels, the more stressed he becomes, the more irrational will be.

George can't change. He KNOWS his little people are real. You can change. You can accept his reality. (See last week's blog about how to do this.) When you do, he will calm down. As he does, the negative feelings will decrease. The sooner you can accept George's little people, the less impact there will be.

You can change but it takes time. At first, you will find yourselves arguing about whose reality is right. This normal. Don't beat yourself up over it. Just step back, and take a deep breath. Then start over. Take some more deep breaths. It's calming and the extra oxygen improves cognition...for both of you! Always remember to breathe out twice as long as you breathe in to prevent hyperventilation. You don't need to say anything. Just start breathing. It's contagious! George will soon start be breathing right along with you. Then you can go back to being supportive.

Some helpful hints about dealing with hallucinations:

• Ask George if his little people are bothering him. If he says they aren't, then you can ignore them. When Annie "saw" a woman on the couch, Jim asked, found out Annie wasn't bothered, and said "OK, we'll just let her sit there." and Annie was fine with that. Let yourself be fine with it too.
• Ask George to tell you about them. Ask questions. What kind of clothes are they wearing? What color...? This will often make them disappear...his brain can't deal with so many specifics.
• If they are bothering him, join his reality and you can probably get rid of the hallucinations. Jim used to usher Annie's "visiting" children out of the house, saying, "OK, kids, time to go home now." Once the door was closed, so was her hallucination.
• Accept George's little people as a fact of life, a part of the family. The more relaxed you are around then, the less problem they will be to either one of you.

Next week, the blog will be about some revolutionary ways to accept delusions.

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

For information about better communication, view Teepa Snow's videos:
Teepa Snow's Positive Approach to Dementia Care

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

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.

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.