Easter Sunday

Last Sunday was Easter. It was a different experience for us. We went to church online. We heard familiar voices saying needed words of encouragement and sang along with familiar songs to lift our spirits. We missed the greeting and meeting that goes with church in our minds, but we appreciated the chance to commune with the more than one hundred people who participated online with us. We hope you had similar experiences on this special day.

That service reminds us of how we all must learn new skills and new ways of connecting. We, as humans, need to connect with others and that is more difficult right now. But we can make phone calls and send emails. We can learn to use Zoom for gathering in a group. I'm sure there are other ways too that this once computer savvy but now way behind the times senior doesn't know. Give them all a try and use what works!

LBD care partners have an extra challenge in that their loved one may not understand what is happening. LBD tends to make groups confusing and so your loved one may actually appreciate social distancing and quarantine. Take this as a gift; one less thing to be concerned about!

Another gift for me is the appreciation I have for those I do connect with. I don't take this so casually anymore. Feeling grateful is very healthy and I've had a chance to feel grateful a lot lately. Sad, too, I admit, and concerned for our country as a whole and for individuals who are dealing with much more difficult situations than we are.

By the way, we welcome you to comment. If you add your phone number I will call you, so that you can ask questions, share experiences or just connect with another human. Since I review all comments first before posting them, your number will stay private and your comment will only be posted if you want it to be. Also,  we do not post any message that includes another website link.

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.

Special Book Sale

Dear Readers,

We are interrupting our three part series on hallucinations to share a great offer with you. The second blog in that series will be here next week. But right now we want to offer you something to read while you self-isolate and take care of yourselves and your loved ones and so we are giving you our Award Winning Caregiver's Guide for FREE when you buy the bundle at a lower price than we've ever offered. We hope it helps a little.

Jim and Helen Whitworth

A LIMITED TIME OFFER!

All FOUR of our LBD-related books at the
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  Award Winning Caregivers Guide
Managing Cognitive Issues
Responsive Dementia Care
Lewy Body Dementia Manual for Staff

This is a $85.70 value for a special price of $59.00

THAT'S A $26.70 SAVINGS!

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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.

Understanding and Managing Fluctuations

This blog is based on a 2019 IDLBC presentation about fluctuations. This week's is by Tanis Ferman PhD, who is based at the Mayo Clinic in Jacksonville, Florida. Tanis is a pioneer in the work with LBD and one of our mentors.

Our bodies all have natural cycles of fluctuation in sleep, appetite, body temperature, hormone controls, alertness and blood pressure.

The fluctuations related to Lewy body diseases are different. They don't necessarily have a regular cycle or rhythm. They affect cognition but they can also affect motor function, communication and even behaviors. These fluctuations are not natural. They are caused by the loss of

• dopamine, important for movement, attention and reward centers
• acetylcholine, important for cognition, wakefulness and attention.

These fluctuations are not due to, but may be worsened by:

• age, dementia severity
• delirium (infection, dehydration, intoxication or withdrawal, metabolic issues)
• medical conditions, neurologic conditions (stroke, seizures)
• sleep issues, alcohol use, pain, discomfort
• mood, catastrophic emotional reactions
• medication side effects, including but not limited to:
• anticholinergic agents,
• dopamine agonists,
• sedating medicines,
• opiates,
• oral steroids

Care partners talk about the "Good Times" and the "Bad Times." Loved ones may fluctuate between these two poles several times a day. They start out with mostly Good Times and occasional short bouts of "Bad Times." Eventually this changes to the opposite, with mostly Bad Times and occasional Good Times.  During the Bad Times, a person is drowsy, zoned out and unaware. They are easily distracted, tend to use words out of context if they can communicate at all, and find performing tasks difficult or impossible.  During the Good Times, a person is awake, lucid, and aware. They are able to focus (pay attention), can communicate better and can perform tasks more easily.  Managing fluctuations involves:

• accepting them as a part of the LBD disease. Accepting allows you to let go of negative emotions that can make the symptoms worse and last longer.
• looking for patterns so that you can adjust activities to fit your loved one's more aware parts of the day. When is your loved one's most alert time of the day? That might be the best time to plan personal care. When is the time of the day when Bad Times are more likely to appear? That might be a good time to schedule naps.

Thank you, Tanis. Next week's blog will be a review of Showtime, which is probably the most difficult to deal with kind of cognitive fluctuation.

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.

Love & Sex, Pt 5: Spouses and Adult Children

This is the last in a series of blogs about dementia, love and sex. Past blogs have addressed the changes dementia and dementia caring makes in relationships, the changes it causes to a loved one's brain and feelings.

When you are aware of the changes that dementia causes, it is easier to accept these behaviors as a part of the disease and then move on to find ways to prevent or avoid unwanted behavior. That's what last week's blog was about. However, it is likely that you may still have to deal some. This week we discuss how sposues and adult children can use Responsive Dementia Care's last three As to deal with these behaviors when they occur.

Attitude. Developing the right attitude goes a long way towards more helpful actions.

• Empathy will allow you to see the issue from their viewpoint. This is the only one that counts, since only you can change. (See previous blogs about this.)
• Accepting your loved one's views and needs will prevent negative feelings from interfering. As long as strong negative emotions are present, your loved one can't "hear" you emotionally and will not respond positively.

Action. You are the only one who can chose how to act. You loved one can't. However they can mirror your actions, and follow your lead--if they are calm enough to "hear" you. Your goal is to behave in a way that calms your loved one and allows you to access their attention enough to refocus it onto something more acceptable.

• Last week's blog recommended that you proved plenty of emotional support throughout the day. This continues to be one of the most important things you can do.
• Gently reject an inappropriate approach by putting it off. A spouse might smile and even touch gently, but then say firmly, "Not now, dear" and move away. Alice said that when her husband was amorous during the day, she'd smile and tell him, "as soon as I finish this." Then she made sure her task lasted long enough for him to forget his request.
• Other spouses recommend cuddling, which even they can enjoy.

For the adult child, the issue is more difficult and embarrassing. Here are some suggestions. Of course, these can also work with spouses:

• Simply ignore the sexual aspect of an advance and respond in a friendly way with something distracting. (Don't worry about this bringing on more episodes. Unlike a child, a person living with dementia doesn't learn.) Most of these advances involve a need for attention. When you give this but don't reward the sexual message, the inappropriate behavior often decreases.
• If the behavior continues, shake your head, frown and move away if you can. Your nonverbal cues will be more helpful than your words. Remember the directions from last week to avoid anger, defending or explaining, all of which will make the situation worse.
• Move your loved one to a different location. This takes them away from whatever was triggering the behavior.

Averting: Refocusing your loved one's attention by moving the action away from the unwelcome behavior and towards something more acceptable. Such distractions work because dementia makes it difficult to think about more than one thing at a time but ONLY if you have validated your loved one's feelings enough to get their attention. If they are still strongly focused on what they want, your efforts will fail.

• Suggest going for a walk. Exercise can reduce sexual urges.
• Offer a massage of hand, feet or even back. Therapies that involve physical contact can divert the person's attention away from more sexual thoughts.
• Other distractions are sweets (always helpful!) and other things the person enjoys such as card game, photo sorting and viewing or even something you "need help with" like setting the table.

Finally, remember nothing works for everyone. You will likely have to try a variety of things to find out what works best with your loved one. Feel free to share what you've learned in the comments below.

Next week is about cognitive fluctuations, a subject discussed at the 2019 National DLB Conference by LBD expert, Tanis Ferman.

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.