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.