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

Friday, October 30, 2020

LEADER Principles: Obsession

Last week’s blog introduced our LEADER Principles of Interaction, a guide to relating with your loved ones in ways that decrease rather than increase dementia-related behaviors. This next series of blogs will focus on using these principles to deal with  specific behavioral issues. One of the behaviors that seems to be showing up a lot is obsessions. An obsession is getting so stuck on an idea that you can’t move on. Obsession is often a coping method for dealing with discomfort. With Covid making so many changes in our lives, it not surprising that care partners are seeing more of this.

Frank has been obsessing about a bill that he’s sure hasn’t been paid. Mary has tried to tell him it has been paid, but he is stuck in his belief.

Let’s use the LEADER Principles to address Mary’s concerns:

Learn and Lead.

First Mary must learn how Frank’s dementia damaged brain functions.

  • Once a thought is in Frank’s brain, it is his unchangeable TRUTH.
  • Frank’s TRUTH comes packaged with a negative emotion (worry) that demands action.
  • Frank’s brain can only process in the here and now, and so he needs this action to be immediate.
  • Frank’s brain can’t do concepts, and so the action also needs to be physical, something he can experience.
  • Frank can't change but he can follow.

Next, Mary can lead by choosing a way of interacting with Frank that:

  • deflects his controlling emotions and
  • leads with suggestions and invitations

Emotions and Empathy.

Frank’s emotions rule. The stronger the emotion, the more demanding it is. When Mary tried to explain, frustration and other negative emotions:

  • Joined his original worry and made his emotions even stronger stronger
  • Blocked his ability to hear anything that didn’t support his TRUTH
  • Pushed him to increase his efforts to get action.

Mary can use empathy to help her:

  • See the issue from Frank’s view—the only one that counts
  • Understand his concern that the bill is UNPAID.

Acceptance and Alliance. Acceptance does not mean belief but it does mean understanding that this is Frank’s only TRUTH. In the past, both Frank and Mary felt unheard, frustrated and alone. When Mary accepts that the unpaid bill is a serious issue that needs to be addressed and offers work with Frank to find a solution:

  • Frank feels supported
  • His defenses lower and
  • He can pay attention to Mary’s words.

Deflect and Do. Positive feelings of support and alliance deflect negative emotions and begins the process of refocusing. Then, doing something physical must follow to satisfy any remaining emotional demands for action. Here are some suggestions. Can you think of others?

  • Mary can help Frank pay the bill by writing out a check and putting it in an envelope that she sets “to be mailed.” Then this can be tossed when he isn’t looking. (See blog about the value of therapeutic fibs.)
  • Mary can help Frank discover that the account is up to date. She might shout, “Hey, come and check out this invoice that I found.” Then when he does, she can ask, “What is the date? Is it for after the bill was due? What’s our balance? Hey, is it positive?” (By using invitations and questions, Mary leads Frank into the physical action of looking at the invoice and discovering for himself what the invoice says.)

Enthusiasm and Entertainment. Dementia shortens a person’s attention span. This makes distractions good tools for refocusing attention towards something that won’t trigger lingering negative feelings. Effective distractions should be something entertaining presented with enthusiasm.

Mary’s upbeat attitude:

  • gives Frank a model he can copy
  • helps him generate a healthy excitement that keeps his negative emotions at bay
  • allows him to use his damaged thinking abilities the best he can.

Then the distraction Mary offers gives Frank a new focus. The more entertaining it is the better he will be able to focus on it and let go of any lingering worries about that bill.

  • Ice cream or anything sweet usually works well.
  • So might watching a favorite TV show.
  • Can you think of others that work with your loved one?

Residual emotions and Response. Sadly, this isn’t the end of the story. Unlike memories of events, the emotions attached to the events are not erased by dementia. They last, ready to be triggered by a new event, or even a word and re-experienced. The stronger the emotion, the longer they last.

  • Frank is very likely to become obsessed about the bill again and Mary will have to go through the same LEADER process again—and again.
  • Mary’s goal must be to respond quickly so that Frank’s negative emotions get weaker, not stronger. Not only will he be easier to lead away from his obsession this time, but the emotions that trigger the obsession won’t be as strong next time.

The next blog will be about dealing with accusations and irrational anger, which often go together. You may notice a lot of similarity between this blog and the next ones. That’s good. That means that you can then generalize the LEADER Principles to other 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 23, 2020

The LEADER Principles of Interaction

This week’s blog is the start of a new series about what we call the LEADER Principles. This first blog explains these Principles as general guides for dealing with dementia-related behaviors using the “magic” tools outlined in previous blogs. If you haven’t read those blogs, do go back and do so now. These tools, based on different rules than most of us have followed in the past, may not be easy to accept at first. But give them a try; they truly can be magic in helping you interact effectively with your loved one.

My husband, Frank, was diagnosed with LBD a year ago. He had some problems but 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 are worse and he’s angry a lot more. I’ve tried explaining; it just makes him impatient. I try not to respond to his anger with my own but that’s hard sometimes too. And when I try to defend myself, that really sets him off! I’m at my wit’s end. -- Mary

The way Mary responded successfully to Frank for years no longer work with his dementia-damaged brain. She needs new responses, new tools. Instead of reacting to his behavior with old words and actions, she must consciously choose different responses—use different tools. Our LEADER Principles provide a structure for use of these tools.

LEADER stands for:

Learn and Lead
Emotions and Empathy
Acceptance and Alliance
Deflect and Distract
Entertainment and Enthusiasm
Residual emotions and Rapid response

These responses may not feel very comfortable at first but she can adapt. Frank can’t. He simply reacts, communicating his discomfort, pain and fear behaviorally. With Covid messing with their routines, there’s likely plenty of that already. To keep from causing more, Mary must first learn ow dementia, and especially LBD, damages a person’s ability to think abstractly.

Learn and Lead

Learn: To make effective conscious choices, Mary needs to learn how dementia has changed the way Frank’s brain works. Our book, Responsive Dementia Care (see link below) is a good reference. However, she--and you!--can start right here. Frank is losing his complex thinking skills, his ability to multitask, compare, judge, generalize, compare or use concepts like distance and time. His remaining thinking skills function with these rules:

  • One thing at a time. Frank can no longer gather more information, compare, judge or prioritize.
  • One TRUTH. What Frank’s brain first receives is his reality, his TRUTH and can’t be changed.
  • Here and now. Frank has difficulty mentally putting himself in another place. He also can’t refer back to the past or plan for the future.

Lead: Frank can’t choose his behavior; he just reacts. However, he can follow. Therefore, MARY must:

  • Respond in ways that calm rather than irritate Frank
  • Deflect Frank’s blocking emotions
  • Lead by suggestion, invitation and example.

Emotions and Empathy

Emotions. On its way to the brain, each packet of information picks up an emotion, often negative. Negative emotions are the body’s natural alarm system, blaring out a demand action. A person with complex thinking can choose to act now, plan for later action or dismiss the demand as a false alarm. With only basic thinking skills, Frank can only act.

Empathy. When Mary identifies Franks emotions and empathizes with him, she sees the situation from his view—she sees his TRUTH and understands his need for a solution that will quiet his "alarm."

Acceptance and Alliance

Acceptance: Accepting Frank’s TRUTH doesn’t mean that Mary believes it; it simply means that she knows that this TRUTH is all there is for him.

Alliance. When Mary joins Frank’s reality, she becomes his ally instead of his adversary and his negative emotions stop blocking her out.

Deflection and Do.

Deflection. As a team member in Frank’s reality, Mary can deflect (decrease) his negative emotions by agreeing that he has a problem. 

Do. Frank's emotions may be less demanding but they aren't going to quit alarming until he has acted on them. Once Mary has Frank's attention, she can offer to help him find an action acceptable to both of them.

Entertainment and Enthusiasm:

Entertainment.  Once Frank has acted, Mary can help him forget his alarming demands by using something he enjoys to refocus his one-track mind. The most effective distraction is different for each individual, but the more entertaining it is, the better it will work.

Enthusiasm. It also helps for Mary to model eagerness with an upbeat, positive attitude. 

Residual Emotions and Response

Residual emotions. Emotions, unlike events, are not forgotten. Frank may forget about the event that triggered his negativity, but the emotional memory is still there in the background. Depending on its strength, Frank can feel it again and again, as new events trigger it into action.

Response. A rapid response to Frank’s behavior is important. As his frustration builds, so does the strength of his emotions. The sooner Mary can align herself with Frank’s worldview, the weaker these emotions will be. The weaker they are, the easier it will be to deflect them—and the weaker they will be as residual emotions.

The next blogs will take these general principles and apply them to behaviors like obsessions, irrational accusations and hallucinations.

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

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

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.