Has your person with dementia ever believed somethign that wasn’t true? Like that people are stealing things when it’s really that they are misplacing them or losing them?
Or maybe even that they see someone in the house, even though no one else is there?
These are knowns as Delusions and Hallucinations. These are common symptoms that can happen in any dementia. And they are actually two different things, although many people confuse the two.
Today I’m going to share what’s the difference between these two symptoms and how you’ll be able to know whether person you’re caring for has either one or both of these symptoms. AND most importantly, I’ll share some big do’s and don’t when trying to respond, because if you’ve even tried to tell someone what they are believing or seeing isn’t real then you know that usually makes things much worse. I don’t want that to happen to you.
If you'd rather watch a video on this topic, click here.
At its core, both delusions and hallucinations are distortions of reality.
It means their perception of reality is distorted. It’s not accurate. It’s not the same reality as you and I. But it is their reality.
That’s why when you try to tell them no one is stealing their things or that there isn’t a stranger in the home, they get so upset. Because to them, it is 100% true.
Research over the years has show that anywhere between 10-73% of people with Alzhiemer's Disease experience delusions, with most researchers agreeing the actual figure is likely closer to 30%. The figures for other dementias are not as clear but it does happen in other dementias.
On the other hand, it is believed that anywhere from 7-35% of Alzheimer's patients experience hallucinations. Individuals with Lewy Body Dementia and Parkinson’s Disease dementia are even more likely to experience hallucinations.
Usually when we hear these symtpoms they are always bundled together: delusions and hallucinations. But as I mentioned they really are two different things.
Let’s start with delusions.
So, what is a delusion? A delusion is an odd or specific belief that someone has and holds onto despite evidence to the contrary or a belief that they hold that goes against what is perceived by the general public to be true.
These can take many different forms, but some of the most common delusions are of persecution and misidentification.
Delusions of persecution include things like your person with dementia saying that someone is stealing from them, someone is trying to harm them or their loved ones, or that their spouse is unfaithful when that is in fact not happening.
Delusions involving misidentification may include the belief that their loved one is not really their loved one, seeing their child and believing it is their spouse, believing others are living in their home, believing that deceased family members are still living, and believing that fictional shows or events they see on TV are real.
Delusions are untrue beliefs someone holds onto very tightly despite all the evidence to the contrary.
So what are hallucinations?
A hallucination is when the brain tricks itself into thinking something is there when it is not. It can impact any of the five senses. Think of hallucinations as more of a physical experience. Let’s go over an example of each:
The first type is a visual hallucination and it is the most common type of hallucination is dementia. This could look like your loved one seeing someone that is not there, an animal that is not there, but could also be something light seeing lights or objects others don’t see. This is different than a delusion because their brain is actually seeing the person or object there versus in a delusion they are believing someone has been in their house or moved their things but they do not actually see anyone doing these things.
The next type is auditory. An auditory hallucination is hearing things that are not there. For example, your person with dementia may hear someone speaking to them, dogs barking, or repetitive noises when those noises aren’t there.
The next two are olfactory and gustatory hallucinations which really just means smelling things or tasting things that are not there. This could be your person with dementia smelling things like smoke, pleasant things like the perfume their spouse used to wear or tasting a metallic taste.
The last type is tactile. This is when your person with dementia feels something that is not there. Feeling like bugs are crawling on you is a common one.
Ok, let’s do a quick recap: delusions are strongly held beliefs that do not match reality. Hallucinations are when someone sees, hears, feels, smells, or tastes something that is not there.
So, how do you respond to these?
You can’t let your person with dementia keep believing something that isn’t true, right?
Well, pause for a minute. Remember the definition of a delusion? Delusions are beliefs that are held onto despite logic, despite reasoning, despite facts.
Attempting to explain why what your person with dementia believes is wrong is likely only to increase their defensiveness, suspicion, and possibly aggression.
That’s why it’s so important to truly understand thee disease and symptoms that go along with the disease. Otherwise you will continue to do things that don’t work, tear apart your relationship, and make yourself more stressed and frustrated. We don’t want that.
What about a hallucination? You can certainly tell them, that is not real, right?
Again, it may not be real to you but it is real to them. While telling them it is not real may work in some cases, often telling them this can lead to more distress and does not make them experience any less.
So if we can’t correct and bring them back to reality, what can we do?
My top tip for this is to respond to the emotion, connect with them reassure them that you are listening and hearing them, THEN attempt to distract.
In other words pay attention to the emotion behind what they are telling you. Are they scared that someone is in the house? Or are they angry someone is stealing their things? Or are they sad they saw a little kid alone in their house?
What is the emotion underneath their words and then attempt to comfort them knowing the emotion. Once we do that we can start to get them involved in something else. With hallucinations, this can sometime help the hallucinations to go away. It can also be helpful when someone is experiencing a visual hallucination to simply move them to a different area of the house.
Remember, caring for someone with dementia is all about understanding the disease, how it works and has nothing to do with what you see as reality. Trying to care from your reality often backfires and makes things worse.
Oh, Before we wrap up today careblazer, let me throw in a quick bonus tip. Consider joining them in their reality. If they are having a hallucination of bugs crawling on them, help them knock the bugs off. If they are seeing someone in the kitchen, ask them about them. If your person with dementia sees them as pleasant, ask if they want to stay for dinner. Think about how you can incorporate their delusion or hallucination in a way that will help relieve any distress.
Remember, it’s not lying because to them, their brain is telling them it is 100% their reality.
Also, I know that caring for someone with dementia can be incredibly overwhelming with so much information coming your way. To help make things easier for you, I put together a free TV Guide for Dementia. It’s an easy to use guide with links to my top 100 dementia caregiving training videos seperated by section. So whether you are more focused on behaviors, caregiver stress, or preparing for the future, you can download that free guide and pick and choose which videos would be most helpful to you right now. You can grab that free guide in the link here and save yourself lots of time trying to search through the thousands of videos on Youtube.
If you know you’d like to work with me more personally so we can deep dive into your situation, start to reduce difficult behaviors, and have you connect with an amazing community of careblazers, I encourage you to check out my Dementia Care Club where we take all of this information and learn how to apply it to your specific situation in a loving and kind community. Click here to join!
Hang in there Careblazer, and keep up the great work. I know this can be hard.