In the previous blog about Hallucinations and Delusions, we addressed handling the more simple, non-frightening hallucinations and how to keep from escalating the situation. But what to do when the person with LBD is experiencing a hallucination that is extremely frightening and by its very nature, throws the situation into a delusion that must be handled and dispelled to keep the person calm and safe.
A person hallucinating is seeing (or hearing, tasting, feeling) something that in reality is not present. Most often it involves sight, but other senses can be involved as well. A delusion is a false belief about a situation that is held despite all contrary evidence.
Hallucinations accompanied by a delusional belief are often very frightening to the person with LBD. In the later stage of the illness my husband believed his hospital bed was a boat that was about to be swamped by water. The room was dim and he had woken up into this terrifying experience. By chance the first thing I did was to turn on all the lights in the room and he looked around somewhat mystified. He was still frightened at first, but slowly calmed down as I walked around pointing out “look, here’s our dresser, and the window to the outside, and the chair,” etc. He slowly took in that there was no water; that he was in his bedroom. This response was counter to all previous advice about not correcting the person about their hallucinations. But sometimes you just instinctually try something. If the person is terrified, you do what you can to try to calm them and help them to feel safe.
Some people will experience paranoid delusions. One time my husband kept insisting I show him my social security card, birth certificate, etc. to prove who I was as he was convinced I was stealing money from him. I somehow knew that showing him documents wouldn’t help, as he would then think maybe I had forged them. Instead, I just sat down near him and quietly began paging through our wedding photo album and pointing out other people in the photos first and eventually the two of us. I didn’t say anything more about him needing me to prove who I was, but just talked about who the people were in the pictures: nieces and nephews, our siblings, etc. The distraction worked.
Another time he kept insisting that he was going to leave our home. I mistakenly fell into arguing with him, telling him it was dark out, that it wasn’t safe for him to leave on his own, etc., using logic to argue and try to convince him. This made him angrier and angrier till he said, “if you keep saying that, I’m going to punch you in the face. I don’t want to but I will.” My initial response of arguing and convincing him that he couldn’t leave was based on my fear and stress level. This added negative energy to the interaction and escalated things. Suddenly not only was he in a delusion that he wasn’t at home, but we were in a struggle for control.
So I shifted gears and got very quiet. I calmly stopped making eye contact and looked down at my cell phone as if I were reading something. He then struggled to his feet and headed down the hallway toward the bedroom, thinking he was leaving the apartment. He was there for about 5 minutes. When he returned the whole incident was over. He cheerfully said, “hello” as he came into the room. Of course, I had no idea how this was going to go, but it definitely began to resolve when I disengaged from the struggle. So a little mantra, “don’t add negative energy to the situation” can be helpful.
It’s also a good idea to have one or two people whom you trust to be helpful in your caregiver “toolbox.” A familiar person who understands the situation and can come pay a visit while you “run an errand” is extremely helpful. Admittedly, not everyone is lucky enough to have someone who can drop everything and come help out, but if you do, the distraction of a different person can often be enough to diffuse the situation.
Finally, I have no proof of this medically, but I have noticed, as have other LBD caregivers, that a delusion seems to have a time limit and “burns itself out” after about 30 minutes. I don’t know if this is actually a reliable fact, but if you begin to notice a pattern such as this with your loved one, it can help you remain calm knowing “this too shall pass.”
There are some medications that are given to ease these types of hallucinations and delusions. However, the decision to try a psychotropic medication must be carefully considered by the patient’s neurologist who is fully informed about the seriousness of prescribing these medications to a person with LBD. (For more on this topic, please see our blog post from March 2021, How Antipsychotics Affect People with Lewy Body Dementia.)
To recap: the most important thing to remember when helping your loved one through a difficult hallucination or delusion is to stay calm and speak quietly and calmly. Don’t add unnecessary energy to the situation. The more you argue, the more the situation will escalate. Strategies that can help are distraction, walking away briefly into another room, or simply not responding to the content and changing the subject. Keep in mind that your goal is to help your loved one feel safe.
We welcome comments and questions. What has worked for you? And remember, our Helpline is available every day.