The Whitworths of Arizona, bringing science to you in everyday language.

Friday, October 16, 2020

Magic Tools 5: Distraction

Once I accepted Frank’s view of things and did what I called to myself “playing his game,” life became a lot easier. I’ve even learned to apologize like I mean it! He calms down and then I can usually get him to forget all about being upset by offering to do something fun with him like looking at old photos. Mary

If you haven’t read the earlier blogs in this series, go do that now. They will explain how dementia damages the brain and why Mary’s “playing Frank’s game” works. This is the final blog in the magic tools series and is likely the one you know best, distraction. The magic of distraction is that it refocuses your loved one’s attention away from whatever was causing the unwanted behavior—and makes both of you feel much better.

Distraction works because dementia:
  • Limits a person’s attention span.
  • Decreases their ability to consider more than one thing at a time.
  • Promotes following by impairing the ability to initiate action.
Thus, once you can get your loved one’s attention focused on you instead of their problem behavior, it can be fairly easy to make a suggestion that will draw their attention further away from the situation causing the behavior.

Distractions won’t work if:
  • You don’t have your loved one’s attention. You can’t compete with the attention that strong negative emotions demand.
  • The situation isn’t physically resolved. This must happen for those negative emotions to stop blaring and demanding action.
  • Your loved one isn't interested in your choice of distraction.
What’s a good distraction? It will work best if:
  • You are enthusiastic about it too. Your loved one is a follower and so if you want to do it, it will be easier to convince them to do it too.
  • It is attractive to your loved one, and is something they enjoy. This will vary with each person.
  • It is sweet. Dementia damages the ability to taste but the sweet taste buds are the last to be affected. Ice cream is usually a good bet...sweet, with a cold kick as well.
  • It has some physical aspect, since your loved one functions better physically than they do mentally.
  • It moves your loved one physically from the location where the behavior was occurring, thus eliminating visual triggers for a recurrence of the behavior. Start you offer with "Let's go....(somewhere else!)"
  • It is positive. Make it a happy event or you are likely to re-invite the negative behavior.
OK, we’ve talked about some “magic” tools. Now let’s put them to work! The next series of blogs are about the LEADER Principles of Interaction, guides for using these tools with a variety of dementia-related behaviors.

For more information about Lewy body disorders, read our books:

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.

Friday, October 9, 2020

Magic Tools 4: A Sincere Apology

Apologizing to your irate loved one for something you didn't do may be the last thing you want to do. But it is magic! To understand how it works, you must see the interaction from their reality. When your loved one feels wronged and voices an accusation, they need to have their concern recognized and validated. Only then do their negative feeling stop blaring. (See the second blog in this series, The Magic of Empathy, to learn more about the importance of paying attention to your loved one’s emotions.)

This often means apologizing for something you didn’t do. However, the issue isn’t about what you did. It is about what your loved one BELIEVES you did—and this is something neither he nor you can change. But you can change your response. Our book, Responsive Dementia Care, explains it this way:
The last time Gerry accused me of infidelity, I just told him I was sorry. I was amazed. Once I'd accepted his way of seeing things, he calmed right down. Then, when I suggested we go have lunch, he was happy to go. - Olivia

Olivia’s apology defused the situation. Gerry felt heard and was able to let go of his painful negative feelings and relax so that Olivia was then able to use his short attention span to deflect his attention onto something more pleasant.
Don’t wait to apologize. Do it quickly. The longer you resist, the stronger your loved one’s emotions become and the harder it will be to deflect them.

When you apologize, be sincere even if you didn't do anything wrong. Without sincerity, your apology may not work. You can justify to yourself an "I'm sorry" statement about something you didn't do by:
  • Thinking about how sorry you are that your loved one is having to experience this unhappy experience, even though it is not your reality.
  • Considering yourself an improv actor in their drama.
  • Accepting apologizing as a tool that can quickly defuse negative feelings and replace them with positive feelings like validation and acceptance.
Don't worry that your apology will cause your loved one to believe even more firmly in their accusation. The opposite is actually true. Since emotion, not fact, is the driving force for your loved one’s behavior, your resistance increases your loved one’s negative feelings and strengthens their belief. Your apology deflects those emotions and replaces them with positive feelings of being heard, understood and valued. It also weakens their emotional memory of the event—and thus, the strength of these residual emotions when attached to upcoming events.

Next week, the blog will be the first in a series on what we call the LEADER Principles. This are a guide to help care partners deal with dementia-related behaviors.

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.

Friday, October 2, 2020

Magic Tools 3: Empathy

Last week, we started a series of blogs about the magic of using the right tools with LBD. If you haven’t read last week’s blog, do go back and read it. It lists some of the most important ways that dementia changes your loved one’s brain. Doing your homework and learning about these changes is a requirement if you are going to use these tools well. Last week’s blog also emphasized that the way you respond can make magic changes in your loved one’s reactions. At first, your response likely isn’t going to be automatic. It needs to be a carefully thought out choice, a conscious choice based on what you’ve learned about the dementia-damaged brain.

This week, we take the next step and talk about how important emotions are. Once dementia sets in, emotions rule. Last week, you learned that your loved one must accept the first information they receive about a situation as their TRUTH. That first information always has an accompanying emotion, and since the brain doesn’t like the unknown, it makes up a story to justify the emotion. This is a normal process—we all do it.
  • Something happens. You see a dog or hear someone talking on the phone or….
  • This information travels to the brain and picks up an emotion along the way. Since negative emotions like fear, worry, frustration or anger are the strongest and most urgent, the chances are that it will be one of these.
  • The brain doesn’t tolerate uncertainty, and so it automatically adds a reason for the emotion.
  • These strong and urgent emotions function as a natural alarm, a call to action that blares until the “reason” is addressed.
  • Then the brain uses complex thinking to evaluate the situation: Is the need for action real or false? If it is real, is it mild or severe? Should I act on it now or can I postpone action until later?
Up to the last step, that’s what we all do. Last week we introduced Frank, who is living with LBD. He can no longer take that last step. His brain doesn't have the ability to evaluate or decide on an action. Instead:
  • He must accept the emotional alarm and the reason for it as real and urgent—his TRUTH.
  • He will continue to feel the negative emotions until he believes that they have been physically addressed. (A mental solution will no longer work… “it was already taken care of” or “I’ll do it later” or even “that’s Jane’s job” just doesn’t compute.)
  • Stuck with this blaring negative emotion that demands action, Frank does his best to address it with behavior that is likely extreme and appears irrational.
Empathy is an essential dementia care partnering tool. That underlying negative emotion driving your loved one’s behavior MUST be addressed. Nothing else will work.
  • Ask yourself what you would feel if you believed as he does? Allow yourself to feel that.
  • And then, go deeper. What else might you feel in his place? For example, yes, you would feel angry if your believed that your spouse was unfaithful. But what else would you feel?
  • There is usually an underlying emotion causing the anger. For example, belief in a spouse’s infidelity is often based on a fear of abandonment.
  • Speak to that emotion, not the words or the actions. This is what you must name and share and deflect. (More about this next week)
The Magic of Self-Awareness. Self-awareness is another tool that focuses on emotion. Although Frank can’t empathize, he is super-sensitive to the emotions of others, and especially his wife, Mary's emotions. He doesn’t see them as hers however. Anything he feels, he owns.

And so if Mary shows up feeling angry at their neighbor, Frank feels her emotion, identifies it correctly as anger and correctly relates it to Mary.

But then, he owns it. That is, Frank’s brain:
  • picks up Mary’s anger as his and, as always,
  • adds a “reason” based on a residual feelings like fear or loss. 
Thus, Frank experiences Mary’s anger at the neighbor as his anger AT HER for something hurtful that he now believes she did to him.

You can avoid passing your negative feelings on to your loved one by being more aware of your own emotions.
  • Routinely check your emotional attitude before you interact with your loved one—or even before you enter a room where your loved one is.
  • What are you feeling? If it is something negative, take a moment to consciously choose something else to focus on.
  • The something else doesn’t have to be super positive, just not negative. (YOU can do this. It isn’t easy, but with practice it gets easier.)
  • When you just can’t stop feeling negative (and no one can all the time!), take feelings into the bathroom or at least, out of the room until you CAN feel more positive.
The next blogs will address other “magical” dementia care partnering tools, including acceptance, apologies and distractions.

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.

Friday, September 25, 2020

Magic Tools 2: Conscious Choice

Last week we started this series about behavior management with a discussion about checking on a couple of issues that often lead to difficult behavior, your loved one's health and their environment. If you've found no problems there but the behavior is continuing, it is time to look at how you interact with your loved one.

Dementia changes the rules. It changes how your loved one thinks and what they do. For them, what once was simple curiosity can become a wild accusation. What once might have been a pleasant fancy, a wishful thought or an uneventful happening can morph into a totally believed delusion. Unless you change your own behavior, you may find that all too often, once calm discussions become raging arguments.

Frank and I have had a good marriage where we could usually talk out our differences. But then he was diagnosed with LBD a year ago. We were doing all right until Covid came along and changed so many of our routines. Frank hates change and can’t understand why we must stay in the car when we go out for ice cream or why everyone we see is wearing masks. I think this all frightens him. His delusions have gotten worse and he’s angry more too. I’ve tried explaining; it just makes him impatient. I try not to respond to his anger with my own but I don’t always succeed. And when I try to defend myself, that really makes him angry! I’m at my wit’s end. Mary

Like Frank and Mary, most of you have had successful relationships prior to LBD, as couples, parent and child, siblings or friends. You had developed tried and true ways to relate comfortably. When dementia appears, those old ways that once worked so well often fail. For example, Frank and Mary’s ability to talk out their differences depended on being able to recognize and respect each person’s point of view and then make compromises. This requires complex thinking, something LBD has taken from Frank.

New Tools for New Rules. Since dementia changes the rules, Mary needs to learn what has changed and how to deal with the results of those changes. Our book, Responsive Dementia Care explains the thinking skills LBD takes away and those it leaves. Briefly, it takes away the ability to multi-task, generalize, empathize or prioritize. Without these skills,
  • Frank can only react. He can no longer choose between two ideas, change his mind or make judgments.
  • Frank’s brain now accepts the first information about a situation that it receives as an unchangeable fact, his TRUTH.
  • He cannot compute concepts like distance and time. He must function totally in the here and now.
  • Everything is either/or: black or white, is or isn’t, yes or no. There are no maybes, ifs or laters, no distances like near or far, no graduations like a little or a lot. Frank is either very hungry not hungry at all, extremely angry or not angry at all, etc.
The Magic of Conscious Choice. Making a conscious choice to try a different way of responding to your loved one can be magic. Even though Frank can no longer make choices or initiate change, he can follow. Thus, when Mary changes her own behavior, Frank can follow her lead and yes, then he can change too!

Learning how the dementia-damaged brain functions is the first step in this process. Then she can use this information as a guide for choosing a response to Frank. When Mary makes these conscious, thought-out choices instead of reacting automatically, she is much more likely to be successful in leading Frank away from the circumstances driving his behavior.

Next week’s blog will be about emotions and the magic of empathy.

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.

Friday, September 18, 2020

The Magic of the Right Tools, Pt. 1

Jim monitors several online LBD caregiver support groups. Lately, he’s been reading a lot of entries from distraught care partners who are can’t understand why their old tried and true ways of interacting with their loved one no longer work.

When we talk about tools for managing a loved one’s apparently irrational behavior, we need to start with a couple of things that may not appear to have anything to do with the behavior that is showing up. We call these the checks: checking the health and environment. Our books about LBD (see below) all have chapters that address these issues. But briefly:

Health Checks: Dementia changes the rules. But somethings don’t change, especially concerning health. Your loved one still has the same health issues, except that now dealing with the dementia takes up a lot of the body’s reserves and so their health problems may get worse. Infections are also much more common. All of these can cause your loved one pain and distress.
  • When a person has lost the ability to communicate, which can happen on with LBD, they will use behavior as communication.
  • Even if they can communicate, they may not even be aware of a specific pain—they just feel bad and again, express their pain with behavior.
Before you consider any other reason for your loved one’s behaviors, check their health. Look for bruises, consider a urinary or other infection and check other health issues specific to your loved one. You might be surprised at how fixing one of these can change their behavior--like magic!

Environment Checks: Dementia changes so much that your loved one really needs the stability of an unchanged environment. Familiarity is a friend and change is the foe. In an environment where you loved one feels comfortable and safe, unwanted behavior decreases.
  • Keep your home d├ęcor the same. Even holiday decorations can be an unwelcome change and should be used sparingly.
  • Set up routines and do everything with your loved one the same as much as possible. Routines are magic for helping your loved one to feel in control of their ever-changing life. The more routines in their life, the safer they feel. And the safer they feel, the less behavior you can expect.
Then, if you’ve determined that to the best of your knowledge, the reason for the behavior isn’t health or environment related, it is probably due to YOUR behavior! Yes, yours! But the good news is that unlike your loved one, who can't make changes, YOU can change. You can learn new ways of relating with your loved one. New tools. With these, you can change your behavior and then, lead your loved one into changed behavior of their own.

Next week’s blog will discuss how dementia changes the brain and address why it is necessary to change your behavior if you want your loved one’s to change.

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.

Friday, September 11, 2020

Caring for the Caregiver During the Pandemic

This article, written by Michele Grigaitis- Reyes DNP, FNP-BC CNRN, FAAN, was borrowed from the Beacon,  a newsletter from Phoenix's Banner Health. We've attended the LBD caregiver support group Michele facilitates there and can attest that she is very familiar with LBD and all its challenges.

Now in addition to you being the primary caregiver to your loved one, your activities are restricted. Your loved one may be seeming to decline as time goes on. You both are likely at high risk for complications if contracting the virus and likely your families and friends are telling you to “wear a mask and stay home”. Something as simple as going to the grocery is fraught with decisions- do you go in the store? Do you take your loved one? You no longer have the ability to access some of those respite activities that were so helpful to you. Even visiting with your family is limited. An already stressful role is now exponentially increased. So, what can you do?
1. Eat a healthy diet. Both you and your loved one will benefit from maintaining a typical diet. On occasion If possible, order takeout from that restaurant you both like, or go for a drive and get lunch from a drive thru
2. Neither you nor your loved one will benefit from adding or increasing alcohol. Limit your intake to no more than you did prior to pandemic. The National Institute of Aging recommends no more than 1 glass daily for women or 2 for men.
3. Get plenty of sleep. Lots of research shows sleep is an under recognized and under-treated problem in caregivers. We know that “role overload” is associated with poor sleep quality, and currently the restrictions of the pandemic would lead most, if not all, caregivers to overload.
  • Stick to a sleep schedule, even on weekends. 
  • Be sure your exercise is 4-5 hours before bedtime. 
  • Keep the bedroom cool, and turn of that television, tablet, or cell phone! The lights associated with these are known to affect sleep. 
  • Be sure to have bright light exposure during the day.
4. Regular exercise is very important. Perhaps you played golf, or pickleball, or went to the Silver Sneakers program. Or, maybe you didn’t really exercise at all. Now may be a good time to start. There are exercises you can do at home. Perhaps you and your loved one could take a walk every morning. You can do simple exercises with items you have at home. You can find a step by step plan, with pictures, at www.nia.nih.gov and type in exercise.
5. Establishing a routine is very important, and now more so both for you and your loved one. Eating meals at the same time and your sleep schedule at the same time nightly. Try to do some exercise 3-5 times a week. Try to include an enjoyable activity each day or week.
6. Take breaks from watching, reading, or listening to the news. Hearing about the pandemic non-stop is stressful for everyone. If television watching must occur, try to find channels that have pleasant or “happy” stories.
7. Use, or learn, relaxation techniques. Yoga, Tai Chi, Mindfulness meditation, and other methods, can do wonders for your stress level. Even taking deep breaths for a minute or two can be helpful. There are a myriad of resources online.
8. Connect with others. Reach out to families and friends. Call on the phone, or perhaps chat with the neighbor over the fence.
9. Connect with support groups. Most groups are being held using some type of technology platform such as Zoom or Skype. These programs allow you to see each other. If you don’t have access to the technology, that’s not a problem either. Most have the option to call in on the telephone. (You can find a list of online LBD support groups at LBDA.org.)

Thank you, Michele. Next week’s blog will be the start of a series about managing dementia-related behaviors.

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.

Friday, September 4, 2020

Dealing with Dementia During the Pandemic

The pandemic has presented care partners with a whole new batch of concerns.

For those with loved ones in a care facility, the biggest concern is being unable to visit them or be with them during times of stress such as illness, surgery or final days. You may understand the reason for the restrictions. You may know that the staff is doing their best to fill in the gaps. But this doesn’t stop the worry and guilt about deserting a loved one who can’t even understand why. There is no easy or perfect answer to this. What answer there is will usually require working with the staff to find ways to connect, ways like window visits, Zoom visits, phone visits and perhaps even outdoor visits—from a social distance.

Then, once you’ve done all you can to maintain contact, you need to let go of the worry and guilt. Their job was to motivate you to act—and you’ve done that. Worry and guilt that hang around after their job is done are like rotten fish, obnoxious and unhealthy.

Those who are caring for their loved ones at home have questions like these:
  • How do I take care of myself when normal respite options are limited or unavailable?
  • How do I keep myself and my loved one safe?
  • How do I help my loved one, who has a dementia-related fear of change, deal with all the necessary changes?
  • How do I deal with the behavioral changes that often follow these changes?
There are no easy answers to any of these questions. And no single answer for any of them either. As with all dementia-related caregiving, there are many general answers but each must be customized to your own situation.

How do I take care of myself when normal respite options are limited or unavailable? As care partners, we tend to be much more focused on how to care for your loved ones and this question often gets asked last, if at all. But as care partner advocates, Jim and I know that it is often the first question you should address. If you don’t take of yourself, you won’t have the energy, stamina or even the health to you need for the demanding job of caring for your loved one. That’s why next week's blog will be about this very subject.

How do I keep myself and my loved one safe from the virus? Experts tell us that the safest thing to do is to stay home. Use online ordering, deliveries and curbside pickups instead of going shopping or eating out. You can find many more thorough guidelines online, but the basics are that when you do go out:
  • Wear a mask—to protect others. Yes, I know, you are sure you aren’t contagious. However, since there may not be symptoms, you can’t be sure. Wear the mask!
  • Practice social distancing—to protect yourself. Keep at least 6 feet apart from others not in your family group. That’s the distance the virus appears to be able to travel from one person to another.
  • Get tested. Experts say the more people who get tested, the better they can watch and control the spread of the virus.
How do I help my loved one deal with the many changes? Since your loved one may not be able to accept wearing masks, etc., you may find that the best bet is simply to stay home, or to go out by yourself when you need to. Other changes will be difficult  explain too, like why no one comes to visit anymore. In fact, explanations are seldom helpful when reason isn’t an option. Try empathizing and sympathizing instead. If you find a way to agree, do so. And use patience, it is more soothing. Your friend here is time. As the new way of life becomes the norm, it will be less difficult for your loved one as well.

How do I deal with my loved one's increased dementia-related behaviors? Sadly, you may be able to use empathy, sympathy and patience to relieve the pressure some, but your loved one will likely still be confused, uncomfortable and probably scared. These negative feelings lead to an increase of those unwelcome dementia-related behaviors.

Our book, Responsive Dementia Care, has many very practical suggestions for dealing with difficult behaviors like obsession, delusions and irrational anger. Do consider reading it. Past blogs have also already addressed various aspects of this issue too.

A series of blogs reviewing our take on behavior management  will start two weeks from now. The LEAD Principles are a guide for helping you lead your loved one away from behavior-causing themes towards those that calm and comfort. Following blogs will be about using these principles to manage obsessions, delusions and angry accusations, the three Jim has found discussed most in recent care partner groups. However, the Principles can be used with a variety of other behaviors as well.

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.


Friday, August 21, 2020

The Power of Being Postive

Today’s blog is one of my favorite Pat Snyder videos. Being positive is truly powerful. It doesn't just feel good. It IS good. Research shows being positive makes you not only happier but healthier and more energetic. Since being positive is contagious, so are the people around you--including your loved one.

Being positive is not always easy. As a care partner, you may already feel overwhelmed. And this world is even more overwhelming right now. With each of these negative situations, I've added my own positive response. What is yours?
  • A pandemic is changing and limiting our lives. It can be difficult for care partners to get needed help, for singles living alone in isolation, or for out-of-work people trying to exist without a paycheck. My positive: We are a healthy, active retired couple with interests that keep us from being bored--well, most of the time!
  • Several of our cities are hurting with protests and their accompanying police actions. I have a grandson in Portland. You may also have loved ones involved in one way or another there or in other cities. My positive: I am so proud of my grandson!
  • The media is bombarding us with negative and divisive political ads. I often wonder how much barely skirts the truth, if that. My positive: Although we avoid many ads by taping our shows, I have fun analyzing the ones I have to watch. I look for how they are trying to convince me of their "truth." Yes, that's my psychology background--but it takes me out of the gut reaction they want me to have.
  • Weather conditions have been extreme, with earthquakes and hurricanes and the like. For  us in Arizona, it is record-breaking heat with very little of the usual monsoon rains. My positive: I'm so grateful for our well-functioning air conditioning--and for my new three-wheeler that I ride at 5am when it a little cooler.
Focusing on all or any of these issues can cloud the positives. But they are still there. In her video, Pat tells us how to look for the positives in our lives and use them.

Here's Pat's video.

Notice that Pat doesn’t say that staying positive easy or that it comes naturally. It takes commitment and practice. I think it also takes forgiveness, self-forgiveness, that is, because you won’t always succeed. Don’t stay stuck in your failures but look for the lesson: Ask yourself: What can I do to make it easier to be positive next time? And then, move on.

Pat tells you that being positive is a conscious choice and that the present is the only place where you have control. I’ve taught for years that guilt is mainly a futile effort to manage the past and worry is an equally futile effort to manage the future. When you let go of the guilts around what was and the worries of what might be, being positive right now gets a lot easier.

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.

Friday, August 7, 2020

Books About LBD Care Partnering

This week’s blog is about the books about LBD care partnering. Pat Snyder offers several in her video. The titles below are links to each of the books she recommends along with a few comments.

Here is Pat's video.

Books that Pat recommended (except for ours):
  • Treasures in the Darkness by Pat Snyder. Pat’s story is a must read, especially for those just starting out on their LBD journey.
  • Facing LBD Together by the LBDA. This free booklet presents the basics and comes with Medical Alert Wallet Card.
  • Dementia Care Partners Workshop by Dr. A good way to learn the basics about dementia care partnering.
  • Keeping Love Alive as Memories Fade by Deborah Barr. Practical suggestions for using aspects of your loved one’s past to help them function better in the present.
  • The 36-Hour Day by Nancy L Mace and Dr. Peter V Rabins. This is the first book Jim read when he started on this journey over 20 years ago. Of course, it has been updated many times since them.
These are the Christian daily devotional or meditation books recommended by Pat. If you want to find something more specific to your own spiritual beliefs check with your spiritual leader, but as Pat says, don't neglect this part of your journey--a healthy spirit makes the other parts of the journey easier.
Pat also recommends two of our books. Links to these books are as always, at the bottom of this blog entry.
  • Managing Cognitive Issues. This book explores the early symptoms and diseases such as Parkinson’s that often progress into LBD and helps you know what to look for and how to deal with it. It also has a huge section on alternative therapies and how to use them.
  • Responsive Dementia Care. Pat said this is her favorite of all our books and yes, it is mine too. Dealing with dementia-related behaviors is often the most difficult job for a LBD care partner. Add to this the fact that drugs can often make the situation worse instead of better. This book explains how these dementia changes the brain and offers a variety of methods, both with and without drugs, for dealing with the resulting behaviors.
There are a couple of our books that Pat didn’t mention because she doesn’t have them in her library. (We’ll have to change that!)
  • A Caregiver’s Guide to Lewy Body Dementia. Published in late 2010, this was the primary book for LBD caregivers for several years. Even today, with many other books out there, it continues to be a favorite of LBD support group members.
  • Lewy Body Dementia, A Manual for Staff. Written for staff, this book includes the same basic information as the Guide does. However, it also includes a condensed version of the behavior management information in our Responsive Dementia Care book. We priced it reasonably so that care partners could give it to their helpers as gifts.
For more recommendations, you can visit LBDA.org and check out their books page.

For more information about Lewy body disorders, read our books:
A Caregiver’s 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.

Friday, July 31, 2020

Care Partner Finances and COVID

For those of you who have been enjoying Pat's videos, she will be back next in four week. For now, we are taking a break to discuss finances, often a difficult subject for the dementia care partner.

Dementia care tends to be very expensive and LBD care can be even more so. Therefore, I’ve invited Judy Baker, of the Senior Caregiver Alliance to provide you with some literature about finances with a special focus on the effect that COVID might have on them:

Retirement Insecurity in the time of COVID. Many of us are already retired, or are seriously considering retirement. This article is an overview of this subject.

Financial Literacy for Older Adults. This article gives an overview of those financial situations that retirees tend to face and then offers some suggestions about how to organize your retirement finances.

Coronavirus Information for Older Adults and Caregivers. This article is perhaps the most valuable and useful of all of Judy’s suggestions. It contains a long list of resources about almost anything COVID related and how it affects you and your loved one.

Coronavirus Impacts on Older Workers. This article is mainly for those of you still in the workforce, and most applicable to those who are caring for a parent while still trying to earn a living.

The next blog will be one about making sure your financial Power of Attorney is good.

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.

Friday, July 17, 2020

Medication Mantras

In the third of a series of videos about LBD and the medical system, Pat Snyder, author of Treasures in the Darkness and LBD teacher, talks some more about LBD and medication. Because she doesn't list the mantras until the end, I'm listing them here so you can connect each one with what she says about it.
  • Make one change at a time
  • Start low
  • Go slow
  • Learn what drugs to avoid
  • Be excited about what drugs are available
Here's Pat's 7.5 minute video: Medication Mantras

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.

Friday, July 3, 2020

Avoid These Drugs!

This week's video by Pat Snyder, author of Treasures in the Darkness and LBD teacher, lasts over 18 minutes, but it is well worth watching. LBD can be very sensitive to so many drug and all LBD care partners need to know about these. In fact, you will want to take notes! And then you will want to go to some of the sources she recommends and learn more. And then you will want some references that you can refer to over and over.

I've listed her recommendations here along with some of my own:
People's Pharmacy Anticholinergic Drug List

Treating and Diagnosing Lewy Body Dementia

Beers Criteria, 2019 version

I also recommend our book, Responsive Dementia Care, which has a huge chapter on drug sensitivity and management as well as several chapters on a variety of non-drug options and alternatives.

Here is Pat's video: Avoid These Drugs When You Can with Lewy Body Dementia
Next week: Pat's video about Medication Mantras.

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.

Friday, June 19, 2020

LBD and the Medical System

The next three week's videos by Pat Snyder, author of Treasures in the Darkness and LBD teacher, will be about dealing with the medical system and drugs. In this first one, Pat takes a little over eight minutes to talk about the LBD and the medical system in general. She makes some very important points:
  • Find a diagnosing and treating doctor who respects you as a part of the treatment team.
  • Avoid emergency rooms and hospitals because the staff all too often does not know how to treat our loved ones in a way that supports them instead of damages them.
  • Of all dementias, LBD is the most responsive to treatment--as long as it is the right treatment.
Here's Pat's video: Lewy Body Dementia Diagnosis? Here Is Some Hope!

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.

Friday, June 5, 2020

Summer Tribulations

We are starting out summer schedule this month. While we are in a stay at home mode like most of the rest of you, we aren’t out, finding new material or meeting people with stories to share. This means that my “creative juices” don’t get triggered as much. We are also updating our computers and so I’ll be spending my time learning new programs and systems.

Today, I’m writing about the times we are in, where many things have combined to make a care partner’s already difficult job even more difficult.
  • Many of you who are already fighting your own battles with LBD. Who needs more? But there is more and it keeps coming!
  • Covid19 had caused issues for each of us: lack of supplies, poor access to medical help and loss of contact with family and friends. It has hit our economy so that many of you may be finding it difficult to pay bills. Perhaps the most difficult is the poor if any access to our loved ones in care facilities.
  • Then we have a year where summer isn’t even here yet but temperatures are already heating up, bringing fires that cause evacuations and sometimes, permanent loss of homes. In other places, hurricanes and other weather-related are causing the same kind of problems.This would be bad enough in normal times but trying to stay safe in the Covid era when you are homeless becomes impossible. Trying to care for a loved one with LBD is made even more difficult when you can’t place them in a care facility until you can find a new home.
  • Now add the unrest with the protesters. We support their concerns and have been thrilled that many have chosen to protest peacefully and that in many cases, the police are supporting rather than fighting the protesters. We are appalled at the rioters and looters that give the protesters a bad name and damage their cause. But the unrest makes it more difficult for those of you caring for loved ones to get out of your home to do shopping or do other necessary errands. Just one more tribulation to add to an already long list.
So those are the negatives. What are the positives? Sometimes, they are hard to find but I believe that such adversity helps us to better appreciate what we do have. For each of us, that list is going to be different. Do you have a safe, comfortable home to stay in? Do you have stores that deliver or stay open at extra hours? (We go shopping now at 6am!) Do you have air conditioning? Do you have family or friends who show up anyway and help out? Do you have enough to eat, a place to sleep? Do you have a computer and are you learning how to do Zoom meetings? How to learn via pod casts? How to use YouTube? Take some time today and find at least three things you are grateful for. Then think about these…and possibly more!...just before you go to sleep tonight.

Finally, as a part of our summer schedule, I invite anyone who is interested to submit a 300-800 article as a guest blogger. Here are the requirements:
  • The content must be about dementia or dementia caregiving.
  • Articles about LBD and LBD caregiving are preferable.
  • Articles must not be sales vehicles for anything. I always delete any comments that are testimonials for herbal or drug cures. This goes for guest articles as well.
  • You can discuss generally something that people might buy, for example, the “Intelligent” speakers that Amazon, Google and others sell. If you mention anything by name, you need to mention at least three, share what you like about each and provide references for all of them.
  • I will proof the article and will usually make some changes to fit our format. I will always send it back to you for approval before I post it on the blog.
  • I will always add a paragraph as introduction and often, I will add comments within the article that are clearly from me.
I hope I some of you will send me some articles!
Two weeks from today, we start another series of YouTubes by Pat Snyder. She has been doing many of these and had developed a good following. We are honored to have her as our guest YouTube blogger!

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.

Friday, May 29, 2020

Showtime and LBD

This week's video by Pat Snyder, author of Treasures in the Darkness and LBD teacher, is short, less than 5 minutes. But it speaks to a very important issue. Showtime, where a person living with LBD appears more normal for a period of time, is a symptom that can make diagnosis and treatment difficult. It can cause family members to doubt your stories about difficult behavior. Pat makes some very good suggestions for dealing with this symptom.

I'd like to add that your loved one has no control over when Showtime comes and goes. It just happens. We as humans all have urges to please people we respect, such as doctors and visiting family members.  You and I can choose to act on those urges or not. Our loved ones can't. They have the urge and they act. Even though the behavior is subconscious, appearing "normal" is hard, exhausting work. Once it ends, your loved one will probably sleep for hours.

Pat recommends in her video that you go back and view her previous video on the Five Moving Parts (date) for more information about how Showtime comes about. I'd also recommend our books, especially Responsive Dementia Care, which focuses on behavioral issues. Both are great for sharing with others as well.

To watch this week's video, click on the title: Lewy Body Dementia and "Showtime"

Next week, Pat will speak about choosing a doctor and getting a diagnosis.

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.

Friday, May 22, 2020

Personify the Disease

This week's 15 minute video by Pat Snyder, author of Treasures in the Darkness and LBD teacher, talks about making the disease the third person in the room. "It's Lewy, not my loved one." Or to a loved one: "Lewy is messing with your ability to talk." Blaming the disease makes it easier to deal with difficult behavior. It also decreases your loved one's frustration.

But she also talks a lot about some other very important things, including improv acting , being legally prepared and the value of sleep. I hope that eventually she'll do a video about each of these subjects because they are also very important.

Click on the title to watch the video:  Personifying the Disease.

Next week, Pat talks about Showtime, a common LBD symptom that often goes unrecognized even by the medical community.

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.

Friday, May 15, 2020

LBD's Five Ps

This week, Pat Snyder, author of Treasures in the Darkness and LBD teacher, talks about LBD's Five Ps. Pat's primary mission is to make your dementia journey more gentle for everyone. In this one, Pat teaches us five ways to act to maintain a safer, more gentle environment. (Remember YOU can make choices. Your loved one can't--they must simply react to the first urge they get.)
  • Be positive
  • Be proactive
  • Be perceptive
  • Be persistent
  • Personify the disease
Enjoy this 8.5 minute video by clicking on the title: A More Gentle Dementia Caregiver Journey: The 5 P's.

Pat has already expanded on one of these parts: Personify the disease. That will be next week's video. I hope that eventually, she'll do a video on each of them.

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.

Friday, May 8, 2020

LBD's Five Moving Parts

This week's video is from Pat Snyder again. It is actually her first video about living with her husband John, who died with Lewy body dementia in 2015. She's been teaching and writing about LBD since well before that and her videos are well worth listening to. In this one, Pat describes five major symptoms of LBD in alphabetical order--to make them easier for you to remember. A couple of comments:
  • I find it interesting that she connect behavior and mood. There is definitely a connection and but I've usually listed them separately.
  • I teach that LBD is more of a thinking disorder than a memory disorder. Pat also discusses how LBD's cognitive issues are different from the memory loss common with Alzheimer's.
I could go on making comments but I think the best thing is for you to just listen to Pat's video. Jim and I may teach about LBD a little differently, but we definitely agree with everything she says. I especially like her final statement. "Of all dementias, LBD is the most responsive to treatment--as long as it is the right treatment." What a positive ending!

Click on the title to see the video: Five Moving Parts.

Next week, Pat again goes alphabetical and talks about the Five Ps.

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.

Friday, May 1, 2020

The Nightmare of Poop

For the next few weeks, I've invited Pat Snyder, author of Treasures in the Darkness, to talk to us via Youtube. Her first video is about a subject that most dementia care partners have to deal with eventually and one that can be very stressful. In fact it was several stressful entries in an online support group that prompted Pat to make this video. Right now is a fairly stressful time already and we don't need more stress. I hope that her suggestions help you to limit the stress in your life--and your loved one's!

And so set aside 20 minutes to sit back and relax while you watch Pat's video on The Nightmare of Poop.

Next week, Pat will be back with another video.

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.

Friday, April 24, 2020

Dealing with the Isolation

We know a lot of you are dealing with how to care for a loved one at home with little outside connections.

  • Do keep up with your friends and support people by phone. Consider a phone tree, where each of you is responsible for calling someone in your group and reminding that person to call whoever they are responsible to call.
  • Do use viewing programs like Skype, FaceTime or Zoom to connect with friends and groups.
  • Do learn to order online and have your supplies delivered. Deliveries are often free right now.
  • Do stay safe, and abide by all the safety measures they are asking us to use--hand washing, etc.

We know others of you are dealing with having a loved one in a care facility that you aren't able to visit.

  • Some care partners say they have found that they can work with staff to have their loved ones at a window so they can wave and at least see you for a while.
  • Some care partners are choosing to move into the facility and sleep on a lounge chair next to their loved one's bed. Care facilities may allow this, especially if it makes less work for them. But you will have to abide by their rules and you won't be able to go in and out as you normally would.
  • Make daily telephone calls if your loved one can still use a phone. 
  • Staff may be able to help you set up Zoom or FaceTime meetings but they are awfully busy right now.
  • Give staff extra kudos...bake them cookies, send them cards, let them know how much you appreciate them. A staff that feels appreciated will treat your loved one better--it's just human nature!

These suggestions aren't anywhere near the whole answer and they may not even help you at all. If you have found something that does, be sure to write a comment here and I will publish it. Be aware that I don't publish anything commercial or anything with a website link in the comment.

In the meantime, stay safe.

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.

Friday, April 17, 2020

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.

Friday, April 10, 2020

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.

Friday, April 3, 2020

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.

Friday, March 27, 2020

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
LOWEST PRICE EVER!
  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!

BUY

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.

Friday, March 20, 2020

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.

Friday, March 13, 2020

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.

Friday, March 6, 2020

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.

Friday, February 28, 2020

Love & Sex, Pt. 4, Preventing and Avoiding the Behaviors

Last week's blog was about unwanted touching. This week's blog describes some dementia-related changes and offers some suggestions for limiting the resulting behaviors. Last week we introduced Stan, a man with early dementia. What he wrote bears repeating in this blog:

"Despite being 77 years old, I find myself having a great many sexual thoughts and feelings. Fortunately, these things have only been in my mind. None of this is at all characteristic of my personality. I attribute this to the changes taking place in my brain."

Stan is right about the changes in his brain. So far, he has been able to avoid acting on his thoughts but as his dementia advances, this will likely change. Dementia damages some areas of his brain less than others. One of these more functional areas is where he stores forbidden words and thoughts. Thus, Stan is beginning to think more inappropriately.
  • His sensory abilities will continue to function as cognitive abilities decrease, making such feel-good activities as sex more attractive.
  • His impulsiveness will increases, so that he will act upon his thoughts without stopping to consider their social acceptability.
  • As illness increases Stan's feelings of inadequacy and insecurity, sex may be the way he tries to maintain his self-esteem.
  • As dependence increases, it will foster a clinginess that makes sex even less attractive to his already overburdened care partner.
  • As his empathy fades, he will have little understanding of why his spouse rejects once welcome overtures, why his adult child is repulsed by such behaviors or why friends are offended by crude words.
  • The autonomic nervous system which controls a his sexual organs weakens. Thus, even though Stan may act out his sexual thoughts with words and touching, he may not be able to function sexually--adding more feelings of inadequacy and possible jealousy.
So, how can care partners deal this? Last week's blog contained a short explanation of the 6 As, awareness, arrangements, avoidance, attitude, action, and averting. This week, we will discuss the first two: Awareness and Avoidance.

Awareness. The first blogs in this series have mainly been about awareness of how the dementia brain functions. Becoming aware of these changes helps you to develop helpful attitudes, which we'll talk about next week. But it also helps you to develop ways to prevent the behavior from happening.

Arrangements. By thinking ahead and making preparations, you prevent some behaviors from happening at all. Mainly this is identifying triggers and finding ways to avoid, change or respond to them
  • Boredom can be decreased with a fidget blanket or regular chores. Amanda reported, "I guess Dad was using sex to alleviate boredom. When I gave him a task, like a basket of clothes to fold and refold, he's happier and doesn't bug me with inappropriate touching." The chores also make him feel helpful and relieves feelings of inadequacy.
  • A need to touch may be satisfied by a stuffed animal or doll. My mother had a stuffed animal she carried with her everywhere.
  • Feelings of inadequacy, insecurity and fear of loss can be alleviated with ongoing emotional support throughout the day. Diane stated: "Once I was more aware of Dick's emotional needs, I found it more important and easier to show care, compassion and conviction that I would be there for him always. That way, his anxiety levels drop and he is less afraid when I'm not there every moment."
You can do some other preparation too:
  • For friends, neighbors and other family members, make sure they know about your loved one's dementia and the way it can remove inhibitions. Remember, your loved one can and often will do Showtime around other people, which can mask the dementia.
  • For strangers, consider making up a card that you can hand out as an apology. It can say something like "Please excuse my loved one. She/he has a brain disorder that increases sexual thoughts and decreases inhibitions."
Avoidance. Avoidance is not avoiding the possibility that these unwanted behaviors can occur. Rather, it is learning to avoiding those behaviors of your own that trigger your loved one's unwanted behavior.

  • Avoid attitudes and actions that trigger negativity. Love ones tend to respond to anger with more anger, to see defending as downright lying, and to find explaining belittling. Avoid words and that don't match your actions. They will believe the actions.
  • Avoid mixed messages, such as words and actions that don't match. Maintain continuity. Avoid allowing something for even a short while one time and forbidding it the next.
  • Avoid nonverbal cues that might inadvertently encourage the behavior. You want your loved one to feel cared for and appreciated, but non-spouses especially will not want their touching to convey sexuality. Even spouses will not want to trigger a sexual response at the wrong time. This can be tricky because touching itself is so beneficial. In fact,  regular loving touch actually tends to decrease rather than increase the likelihood of inappropriate sexual behavior especially when the behavior is an expression of neediness.

Next week's blog will be suggestions for how a spouse or an adult child can deflect unwanted sexual approaches when they occur and do it in ways that cause the least stress for both parties.

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.