I am continually amazed at how we still think dementia is only about memory loss.

When I see Alzheimer’s and other dementias represented on TV, in movies, and on social media, I am frustrated at how these portrayals are often focused entirely on memory. Unfortunately, I sometimes see people in the medical profession present it the same way. Dementia = Memory loss.

But we’re only talking about a small piece of dementia when we talk about memory loss.

If you have dementia or know someone who does, you have probably become all too familiar with symptoms other than memory loss.

Today we will talk about one symptom that many individuals not affected by dementia are unaware of….hallucinations. Yes, people living with dementia may have hallucinations.

Let me add that the experience of dementia varies both by the disease causing the dementia (e.g., Lewy Body dementia, frontotemporal degeneration, vascular dementia, Alzheimer’s) and by the individual. Certain types of dementia are more likely than others to cause hallucinations. In particular, those diagnosed with Lewy Body dementia often experience hallucinations early in the disease process.

I tried to do a bit of research to see what percentage of people living with dementia have hallucinations, but I couldn’t find any statistics that I would trust. Do people with dementia always tell us when they have hallucinations? Obviously they don’t.

I will add that once a guy with Lewy Body dementia looked down at his shoes and said to me, “There are snakes crawling over my feet. I know they are not real but I can’t make them go away.”

Sometimes we identify a hallucination by behavior. We can’t experience another person’s hallucination, of course, but we can hear them talking to someone we can’t see. In other words, we experience a person’s response to a hallucination and have to connect the dots.

Here is what you need to know about hallucinations and dementia.

Hallucinations are sensations that appear to be real to the person experiencing them. When I use the term sensations, I’m referring to the five senses. A hallucination might mean you can see someone who isn’t there. It could also mean you hear voices. And those hallucinations are often as real to the person experiencing them as your reality is to you.

Hallucinations are not limited to sight and hearing. They can involve other senses as well. Someone experiencing a hallucination may insist they smell apple pie and be argumentative when are told there’s no apple pie in the kitchen. They may taste something metallic as they eat their mashed potatoes and start digging through them with their hands to find the problem. A person can also experience body sensations like spiders crawling all over their body. They may pick at their skin until it bleeds.

Hallucinations can cause people living with dementia to have significant anxiety. Their actions might not make sense to us unless we are aware of the hallucination, and often times our reaction to the hallucinations increase rather than decrease that anxiety.

Think about it.

What would you do if there was a large man standing in the bathroom watching you when you showered? What would you do if smelled rotten fish and no one would help you look for the source of the odor? What would you do if there were bugs crawling around in your underwear and people refused to help you change clothes? What would you do if your food tasted so terrible that it was inedible and no one would bring you anything else to eat because they insisted you were being “difficult?”

You’d probably be argumentative. Maybe you’d be aggressive. Or perhaps you’d just go to bed and cry because no one was listening to you. But when people with dementia do these things we say they are a behavioral problem.

If you are interested in watching a video clip on interacting with people living with dementia through hallucinations, I just happen to have one for you: Teepa Snow on Redirecting Hallucinations

There are medications that doctors often try to use in minimizing hallucinations. However, I would suggest doing an inventory to see if there are potential changes that can be made to minimize hallucinations without (or perhaps in addition to) prescriptions.

Here are some ideas:

• Make sure that a person who is prone to hallucinations gets adequate sleep. Lack of restful sleep can trigger hallucinations in those living with dementia. (I also know of a mother of newborn twins who had hallucinations because she had literally not slept in 3-4 days. Our brains don’t work well when we don’t sleep. Surprise.)
• Change the environment. If a person has a recurring and bothersome hallucination in a certain place, either avoid that place or change it in some way. If someone looks out a certain window and sees a threatening figure, put curtains over the window. If a person tends to hear a scary voice when they sit in the lounge, find an alternative place for them to sit.
• Dehydration and starvation can make hallucinations more likely among those who experience dementia. Someone I know took her panicked grandma to the emergency room because her hallucinations had become more frequent and anxiety-provoking. Fortunately, the hospital figured out that she was severely dehydrated and got some fluids in her ASAP. Her hallucinations didn’t go away, but they became less frequent.
• Use headphones and music. I know of a man with Alzheimer’s who experienced auditory hallucinations. He heard voices, and he paced around the nursing home all day—trying to literally walk away from those voices. His family got him an iPod and put some headphones on him. His quality of life improved dramatically. The voices had been drowned out by Johnny Cash and Peter, Paul, & Mary.
• An infection can make someone more likely to hallucinate. When there is a sudden onset or steep increase in frequency, my first words of advice are to run a urinalysis. I am always surprised how often the change is due to a urinary tract infection.
• Listen. Just listen. If you experienced something that scared you or made you sad, you’d want to tell someone about it. Imagine if that person dismissed you or told you that you were making up the story. What if they just changed the subject? Wouldn’t it feel like they didn’t care? You’d feel unimportant and not valued. Why would people with dementia feel any differently in that situation?

Did I mention dementia isn’t just about memory loss? Where can I get one of those sandwich signs? I’ll print this message on it and stand out on the street with those people promoting the sale at the furniture store and the used car dealership.

In order to support people living with dementia and their caregivers, we need to start understanding that dementia leads to deficits in all cognitive function…not just memory. In order to promote our dementia-friendly community movement, we have to understand the experiences of people living with dementia. We need to identify areas in which we can improve services, resources, and environments for this population.

We can’t do this if all we acknowledge is memory loss.