Hallucinations refer to sights, sounds, feelings, and smells that come from inside the brain. Hallucinations are common with Lewy Body Dementia but can happen with any dementia. The person with dementia is seeing, hearing, or smelling stuff that the rest of us are not experiencing. Hallucinations can also happen when people living with dementia experience delirium. Delirium occurs when people living with dementia suddenly become more confused than usual; infections, especially bladder infections, can cause delirium in people with dementia.
When I worked the emergency department years ago, I cared for an older woman who insisted there was an elf sitting on my right shoulder. She wasn’t frightened by it. In fact, she waved and talked to it every time I came over to her. By the end of the shift, I was starting to think that I had an elf sitting on my shoulder!
In people with dementia, hallucinations may arise from changes in the brain and the brain chemicals. Hallucinations may be scary, like seeing a stranger standing next to the bed. Or they can be comforting, like seeing and hearing young children playing in the living room. Sometimes the hallucinations may be more like vivid memories, such as when a person with dementia sees a long-dead family member from long ago.
How to Handle Hallucinations
I am frequently asked how caregivers should handle the hallucinations. For example, if the person living with dementia asks, “Don’t you see the man over there?” should you lie and say yes? Or just say no? I prefer to say, “I don’t see what you are seeing,” or “I don’t hear what you are hearing.” Your next approach depends on how bothersome the hallucination is to the person living with dementia.
Do the Hallucinations Bother the Person Living With Dementia?
Many of my readers and podcast listeners know that I cared for a family member with dementia. Towards the end of Mary’s time with me, I noticed a new behavior. She would reach up and pick at the air. Curious, I asked her what she was doing.
“I’m pulling the yarn down from the ceiling,” she calmly replied. She was seeing shiny strands of brightly colored yarn and was delightedly harvesting them. Apparently, she was going to use them in a future arts and crafts project. Her son was freaked out by her hallucinations and demanded I “call someone” to get her medication. I refused. The hallucinations were not bothering her, so they were not bothering me.
But what if the person living with dementia is upset by the hallucinations? What do you do then?
Is the Hallucination Related to a Past, Significant Life Event?
One of my previous coaching clients was at his wits end. As her Alzheimer’s disease worsened, his wife began to hallucinate that she smelled smoke and could hear the “crackling” sound of burning wood. She would fretfully move from room to room, looking for the fire. She would become increasingly upset and finally insist that they had to leave the burning house. Her neurologist had prescribed medication; it was not effective. I asked him if there was a history of a fire in her past. He was unaware of any history. The next time we met, he excitedly told me that he spoke to one of his wife’s younger siblings and yes, there was a fire in the family house when they were children. The sibling could not recall much detail, only that it happened at night and it was his older sister who woke everybody up because she smelled smoke. No one was hurt but the house sustained significant damage. Now, everything made sense. I developed some scripts for the husband to use as soon as his wife mentioned that she could smell smoke: “You are safe, the fire is out. You are smelling the leftover smoke.” I asked him to keep a log of when she reported smelling smoke to see if there was any pattern. Sure enough, she would report that she smelled smoke a couple of hours after dark. However, I cautioned the husband that she could be detecting the smell of cookouts in the summer and burning leaves/fireplaces during the colder months. If that was the case, it was OK to go outside with her and tell her, “I can smell our neighbor’s fireplace (or barbecue). Can you?” The problem did not resolve immediately but the more he used these strategies, the less upset his wife became.
Hallucination or Illusion?
Sometimes, background noise, bad lighting, and clutter can cause the person with dementia to misunderstand what they are hearing and seeing. I often tell caregivers to close blinds in the late afternoon. Why? Because shrubs and trees right outside of windows can look like scary figures in the dark. When rooms are well-lit and it is dark outside, windows become funhouse mirrors—our reflections are wavy and distorted. A person living with dementia may see their fuzzy reflection in a dark window and believe there is an intruder outside. If a person living with dementia is reporting that they are hearing or seeing something, take a look around the environment. They could be experiencing illusions. People with dementia are more prone to having “breakdowns” in the highways that connect different parts of the brain that help us to identify what we are seeing. Mary once refused to go sit on the couch because she was convinced that the throw pillows were sleeping dogs. When I picked up the pillows and showed them to her, we both had a good laugh. Mary wore glasses and had eye problems, so it is likely that part of the issue was her poor eyesight.
To Engage or Not to Engage?
I’m often asked if caregivers should “engage” with the hallucination. I’m not 100% sure, but I do know of some successes. Honestly, if you have tried everything, including medication—more on that below—why not? Another family caregiver approached me after one of my talks and shared his very interesting story. He was caring for his wife who was living with dementia. She would stand at the kitchen window every day to look at the birds. This was something she enjoyed. One day, she became upset and told him that a man was sitting in the tree looking in the house. The husband gazed out the window but all he saw was a lone branch jutting off the trunk of the tree. He replied, “Honey, I don’t see anything.” He suggested that they move away from the window and go do something else in another part of the house. This went on for about a week, with his wife becoming increasingly upset. He simply cut down the tree branch. The hallucinations stopped. Maybe his wife did have visual hallucinations. Maybe his wife was looking at the leaves around the tree branch and was seeing an illusion of a person. Regardless, problem solved!
I had a similar experience when I was working nights as a nursing assistant in a nursing home. One of the residents started shrieking in the middle of the night. She kept pointing to the corner of her room, screaming that a man was standing there. Without thinking, I strode over to the corner and told the man to go away because I had just called the police and they were on their way. Then, I pushed the imaginary man out of the room. I returned to the frightened resident and reassured her that the man was gone and that I would stay awake all night and make sure she was ok—which was the truth, that was my job. I rubber her back for a bit and she drifted back to sleep. She slept peacefully the rest of the night.
Are Medications Appropriate?
If the hallucinations are scary and upsetting, medications may be warranted. Usually an atypical antipsychotic, and yes, I know these medications get bad reps because they are being used off-label. However, if the medication reduces the scary and upsetting hallucination, and the person with dementia is no longer scared and upset, I think the use of the medication is appropriate. This is a conversation to have with your loved one’s dementia care provider.
An Unusual Situation
About a year after I started working as a nurse practitioner in a neurology clinic, two daughters arrived with their mother for a follow-up visit. Their mother had been diagnosed with dementia at an earlier visit. When I asked my routine question about hallucinations, one of the daughters replied, very matter-of-factly, “Mom has “the sight.” She has seen spirts her whole life.” I am very open-minded, and there are people in my own life who have abilities. But, this was a new one for me. I simply said, “OK” and then continued with my evaluation. As I concluded the visit, I asked the question I always ask, “Is there anything else I can help you with?” That is when the second daughter really caught me off guard. She asked, “How do we know if mom is really seeing the usual spirits or if she is hallucinating?” Damned if I knew! “Wow, that is a great question and no one has ever asked me that,” I responded. I am a firm believer is never bull-shitting family caregivers. If I don’t know, I don’t know. But then, I had this sudden flash of insight. I asked them, “In the past, how did you know that your mother was using her gifts? Could either of you see or sense anything?” The daughters exchanged a look that told me I was going in the right direction. The first daughter replied, “I could never see what mom was seeing, but I could sense ‘something’ was there.” That seemed like a reasonable solution. If mom reported seeing something and neither daughter could sense a presence, then they would consider that episode a hallucination. They would contact me if 1) mom started hallucinating and 2) mom was upset by the hallucinations. At the next visit several months later, when I asked about hallucinations, both daughters just smiled and said, “no.” Works for me.
It’s important to figure out if the person living with dementia is hallucinating or is perceiving illusions due to lighting and clutter. If the hallucinations are not bothering the person living with dementia, I leave things alone. If the person living with dementia asks me about the hallucinations, I reply that I do not see or hear what they are seeing. If the person living with dementia is upset by the hallucinations, I will add that “I know this feels very real to you.” Ultimately, one handles the scary or bothersome hallucinations by providing solid reassurance and validation.
Categories: Dementia Lewy Body Dementia Understanding Behaviors
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.
Thoughts? Comments? Share here!