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.

Making Conscious Choices

We’ve been teaching about dementia for many years. Over time, I’ve come to notice that “normal” people find it almost as difficult to change their minds as does a person with dementia. The difference, of course, is that we have a choice and those with dementia don’t. But how often do we exercise that choice.

For example, we talk a lot about how a person with dementia CAN’T change their mind, once it’s made up because their ability to think abstractly is limited. We can, but how often do we make that effort? Think about the last time you disagreed with someone. Did you consciously use your abstract thinking ability to evaluate their view and consider how it might be right, or even partly right? Or did you respond almost automatically, with your own pre-determined view? If you chose the latter, you aren’t alone. Most people do. They make a decision and stick with it even when new information makes it less accurate. Humans tend to do things the easiest way. Conscious thinking takes effort and the willingness to accept that we might be wrong. The stronger our beliefs, the harder it is to change them.

I often think of a “fact” I learned in college in Alaska. In my Alaskan history class, I learned how people emigrated from Asia to Alaska over the Bering Sea land bridge during the ice age, and then filtered south. Recent discoveries have made that theory very questionable. Even so, it is still the theory that most resonates with me. Now this doesn’t affect my life. However, it does make me think about other beliefs I might have that are more personal. What about the religious and political beliefs that I have developed over time? How often do I question them to see if they are still relevant? How often do you?

Care partners of people living with dementia are challenged to make these determinations all the time. You learn to put aside your own beliefs about what is true and what isn’t and go with your loved one’s views at least enough to let them feel heard and affirmed. But how often do you do this with others?

This time I think of a cousin that I grew up with. We have very different religious beliefs but we can still talk about them. Neither expects the other to “convert” but we are able to consciously use our abstract thinking ability to share and look for value in each other’s ideas. This isn't something we do casually. It takes time, patience, empathy and acceptance as well as a healthy curiosity but the result is a special closeness that we otherwise wouldn't get to feel.

You may think that this blog isn’t about dementia care. It isn’t. It’s about self-care. It’s about choosing to exercise your ability to think abstractly, to listen and consider before rejecting a new or conflicting idea. Remember the old adage: “Use it or lose it.” The less you make conscious use of this ability to make conscious choices, the more rigid in your thinking you will become, making it almost as difficult for you to deal with change in any form as it is for your loved one.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

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

Conscious Choice and Gratitude

For the past few weeks, Geroge's caregiver, Mary, has been learning ways to decrease her situational depression by using her ability to make changes in the way she thinks and responds to her feelings. She's learned to talk and write about her feelings, good and bad. Last week, she learned to laugh more. This week, she is working on making conscious choices and being grateful.

One of the abilities that LBD takes away is that of being able to make choices. With LBD, what you feel is what you get. While it is still true that Mary will feel whatever comes up for her, she doesn't have to stay with it. She can make a conscious choice to change the way she views the situation and generate a more positive feeling. Conscious choices require thinking. They are different from the automatic reactions that are Mary's (and anyone's) first response, and George's only response, to a feeling. They also require the ability to initiate, something else LBD has stolen from George. But George can still follow, and so when Mary changes the way she responds to a negative feeling, George is often able to follow suit.

Making conscious choices. This ability to change one's view of the situation is especially important when Mary begins to feel overwhelmed and discouraged with her job as caregiver. Doing something for someone else can be very uplifting. However, Mary won't feel better about doing things for George if she feels she has to. Then each chore is just one more burden, one more step deeper into depression. But if Mary steps back and remembers that this is a job she chose, she will be able to deal with it better and her depression won't get worse.

Reaffirming past choices. Like many caregivers, Mary made a choice to be George's caregiver when he was diagnosed. "I don't want anyone else caring for my George. This is my job," she said. Of course, when the caring gets rough, it is easy to forget this. Therefore, Mary must consciously remind herself of that earlier choice. She might prefer to be on the cruise they had planned, but, of the choices available to her now, this IS the one she has chosen--and the one she chooses again now. Mary's conscious reminder gives her back a feeling of being in control. With this, her job feels less burdensome even though nothing else has changed. Then, because Mary is more positive, George's anxiety decreases and so do his symptoms.

Gratitude. Like making choices, gratitude requires conscious thinking. That is, Mary has to consciously choose to be grateful--it is not a reflex action. But when she does choose to feel grateful, it helps to unblock Mary's depression-suppressed production of the pleasure-enhancing chemical, dopamine. When Mary's gratitude is directed towards others, it triggers paths in her brain that increase her ability to enjoy other people, something else that depression suppresses. As with any feeling, it also works better when she puts what she is grateful about into words. Because it is a positive feeling, Mary can share her gratefulness with George and he will feel better too. Then, Mary reinforces this by writing about it in her diary.

The best part is that like laughter, gratitude doesn't have to have a reason. Just looking for something to be grateful about triggers the dopamine, and those pleasurable feelings. It also requires Mary to think about the positive aspects of her life which triggers the production of serotonin, another "feel-good" chemical. Mary has now added "the attitude of gratitude" to her routine, along with the laughter yoga she learned last week. Every day, she takes a few minutes to think about what she's grateful for. Even if the day has been awful and she can't think of a thing, the searching for it is enough to help. Of course, finding something is even better.

Of course, these techniques aren't the whole answer. Mary must still take care of herself in other ways like having enough help, getting enough exercise and maybe even talking to her doctor about antidepressants.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

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