When Nothing Seems to Work, Part 3

Two weeks ago, the blog was about how the dementia-riddled brain causes a person to:

• be stuck with the first, often negative view of an event
• have very little empathy

Today's blog is about how emotions drive behaviors. Dementia doesn't damage emotions like it does thinking and memory. Emotions can remain long after the person living with dementia (PlwD) has forgotten what caused them in the first place. And then they get attached to a future event.

Many dementia-related behaviors are driven by a these residual negative emotions. If you can identify the emotion and speak to it instead of your loved one's words or actions, you will have much better chance of success. Many of these emotions are going to be about things like loss, fear of abandonment and lack of respect.

Being calm and patient is a good first step, but that alone may not be enough. You need to really listen to what your loved one is feeling, not just saying. Look deeper than the anger or frustration. These are secondary emotions. Look for the feeling behind them. Helplessness? Fear? Loss? Often it is loss. For example, when the PwlD is railing about a lost driver's license, It might really be a loss of independence, of adulthood, of manhood even.

When the doctor reported John's dementia to the DMV and he lost his license, he was very angry. "Why did she that do that?" he asked. Mary told him, "She's required to." That kept John from being quite so mad at his doctor, but he was still fuming. He complained "I don't have any say over my life at all any more." Speaking to his sense of loss, Mary said, "That Lewy, taking one more thing away from you. It just isn't fair" and even let herself sound a little angry. Mary was doing two things here. She was validating John's feelings, showing "I'm on your side" support, and she was giving him a target for his anger besides her or the doctor--"that Lewy." It did help. John calmed down and said, "Yes, it is, it's not for sissies," a phase they used often about the disease.

You may have been warned not to show anger for fear of increasing your loved one's angry behaviors. However, a mild show of anger can work if you are clearly expressing it in support of your loved one, not at them or at the situation they have caused. This makes them feel heard and supported, not discounted or controlled. Just make sure your anger is less intense then your loved one's. You don't want them to escalate their anger to match yours! Also be sure to follow up such expressions with more soothing expressions of support. "I love you just the way you are," Mary might tell John with a loving pat on the arm or even a hug.

This same technique can work with any other feeling of loss. The goal is to validate the feeling so that the PlwD can calm down. Without the negative feelings reigning, a person can think more clearly. This is true for anyone, including a PlwD. Mary may have to play out the above scene several times if John doesn't remember and again, wants to drive.

Of course, this won't work for everyone. For example, some PlwD don't want to own the disease and so it is difficult to make it the scapegoat. And that's what the next blog is about.

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
Riding A Roller Coaster with 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.