Being with a loved one who is experiencing hallucinations is a disconcerting experience and can actually feel very frightening. In this blog, we will address “simple” hallucinations. In part 2, we’ll talk about the more complex situation of delusions with or without hallucinations.
Fear is often our first reaction when our loved one with LBD sees things that aren’t there, because it makes us feel disoriented and out of control. But it is often nothing to be frightened about. So, with the initial realization that your loved one is seeing something that is not there… Take A Breath. This may feel like a crisis. It actually is not a crisis. Take a few seconds to ground yourself, physically and emotionally. Literally…feel your feet on the floor. Take a few breaths, exhaling s-l-o-w-l-y.
Now, once you’ve done that, assess the situation. This is not the time to set a person straight and try to strong-arm them back into reality. Doing so will most likely upset them and escalate the situation, which might indeed become a crisis. In many circumstances, it can be helpful to simply be curious about what they see. They may find it confusing, and need to talk about what they are experiencing.
Early in the disease, the person with LBD may ask you if you see what they see. If they are aware of their diagnosis and are able to talk about it, you can explain that it is part of their illness. Be reassuring and speak quietly and calming. The amazing thing about LBD is how a person’s understanding can shift moment to moment and they need to be able to talk about what they are experiencing. (For people in this stage of the illness, our LBD Crew support group can be helpful.)
I learned a simple intervention from one of my husband’s caregivers. When my husband asked her “who are all these people in the room behind you?” she replied, “I don’t know because sometimes you’re able to see things that I can’t, but whatever they are doing here, you’re safe and I’m with you as well.” This allows for the reality that you can’t see what they see, but also doesn’t judge or correct the person’s perceptions. Saying, “you’re able” to do something is even somewhat empowering. People with LBD have lost so much. Being told they are able to do something we can’t is just plain nice. I realized this when I was able to use this response with my husband. When he asked me about something he was seeing, I asked him, with a smile on my face, “I’m not sure what you’re seeing. Are you maybe using your super-powers to see things that I can’t?” He got a satisfied almost proud smile on his face and nodded knowingly, “I think I am.” It all remained playful and soon that hallucination became irrelevant. Often, when the hallucination is not starting off as frightening, taking a calm, gentle approach can work to dispel the situation. It respects the person’s subjective reality, which is more likely to keep them calm. And often the person will become distracted and move on. At other times it’s not a bad thing to just let it ride itself out. My husband once informed me, “I’ve been having such a fun time recently, playing with the little children.” I realized that in fact, he had been hallucinating little children lately and frankly I was glad he was enjoying it!
A common trigger of hallucinations can be an object across the room. Lewy body dementia affects the visual cortex of the brain causing the person’s brain to misinterpret the incoming information. A sweater, draped over the back of a chair can look like a person with long hair staring at them. So it may be as simple as just rearranging things calmly. This works particularly well when the person is able to understand that they have a disease that can distort things they see.
However, this may not be enough to reassure the person and keep the situation calm. You may at times need to intervene. Ask if there is something they would like you to do. For example, if they are seeing little animals running around. Again be calmly curious. “Should I herd them out of the room?” “Shall we go into another room? They’ll go away if we do that.” Be inventive. Think about how you would handle it with a small child playing pretend. You’re goal is not to set them straight about reality, but to keep the person calm and unafraid. To be reassuring that they are safe.
Finally, we must mention a much less common, but still not uncommon situation. That is a negative hallucination. This occurs when a person is looking directly at an object but just cannot see it. For example, not being able to “see” the TV remote, despite it sitting on a table, right in front of the person. This phenomena has lead to some families having frustrating experiences of taking their loved one to an eye doctor thinking there is something wrong with the eyes only to be told that the person’s vision is fine. In fact, this is another manifestation of the disruption of the visual center of the brain. This situation can often be very frustrating to the caregiver. The best approach is to calmly hand them the object. As soon as you guide their hand to the object, they seem to be able to see it.
These are just a few of the ways to handle the more “simple” hallucinations. If readers of this blog have had success with other strategies, please share them in the comments section. And as always, remember the Lewy Body Dementia Resource Center is here for you through our Helpline, as well as our local and national support groups for both caregivers and people living with LBD.