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.