Aggression and paranoia are not normal dementia symptoms.
During an intake call the other day, my client’s daughter said “Well, my mom yells and hits, refuses to take her medication, and she’s afraid all of her caregivers are trying to hurt her. You know, the normal dementia stuff.” My client’s daughter believes this is normal because that’s the perception professionals and others who have experienced dementia give out.
Is this common? Absolutely! Should it be accepted as “the norm?” Absolutely not! Throwing, hitting, punching, crying, and paranoia are all expressions of distress, unhappiness, and turmoil.
My client’s daughter and I talked about how those behaviors aren’t normal. She told me how she wants her mom to be as happy as possible for the rest of her life. Of course that’s what she wants! She was so happy to hear this is not normal and that Trovato can help reduce this behavior.
By accepting these behavioral expressions as “normal,” we are doing a disservice to people with dementia and really to ourselves. It makes it harder to provide care, cope with the challenges that occur with dementia, and maintain a healthy emotional and psychological state when providing care.
Behavior is communication
Here is the first problem with accepting that these behaviors are normal for someone with dementia: WE DON’T DO ANYTHING TO REDUCE THEM! Language changes that occur with dementia make it harder or impossible for a person living with dementia to say “Hey, I am feeling ___________ because ____________.” (Let’s be honest, though, most cognitively healthy adults can’t communicate this way either). Also, 60-97% (depending on which study you read) of communication, with or without cognitive impairment, is non-verbal.
One of my clients was living in an assisted living community and she was hitting people “unprovoked.” After some time observing interactions and the environment, I was able to determine that the reason for her suddenly hitting, pushing, or throwing something was a sound. She had extremely sensitive hearing. When I spoke to her in a normal tone, she told me I was yelling at her. So, we had to change the environment and provide some therapeutic tools to the caregivers to minimize this behavior. She was communicating to us that she was scared by the loud noises.
The second problem with accepting these behaviors as the norm is that professionals actually DO implement a protocol to prevent this behavior. Can you guess what the go-to is? Medication. I am not a doctor and I cannot prescribe medication, but I do understand it has its place; it’s just not something I usually recommend as a go-to for managing behaviors.
For my client who was hitting “unprovoked,” the doctor had prescribed medication to help calm her down a bit. It wasn’t until my second time observing that she had started taking the medication. This time, she was asleep on the couch, which wasn’t uncommon as she usually took 10-15 minute naps several times throughout the day. The staff told me “She’s been great today! No hitting or yelling.” I went back to her and waited for her to wake up for 45 minutes. When I tried to wake her, she looked at me for a moment before closing her eyes and falling back asleep.
Of course she wasn’t exhibiting the behaviors. Once I pointed out that this is not her normal, they agreed and contacted the doctor who reduced the dosage.
*I’m not a prescriber and therefore, I cannot say that medication will always have this effect on a person with dementia. In this case, it was the new medication being prescribed for her behaviors. Anytime you notice a change in baseline in a person with dementia (or anyone) you should always report it to the doctor immediately as it can be any number of causes.
Waiting too long to address the behaviors
One of my clients had moved into an Assisted Living (Dementia Care specifically) Community and he was in so much distress that he had fallen, hurt himself (he was bleeding) and was refusing care. He was so anxious that he would not interact with me for more than a few seconds. In this case, even medication may be helpful. However, this client was refusing essential care (cleaning his wound, eating, drinking, etc.) and was refusing his other medications. So, using medication may not be possible.
Usually, before a client gets to this point of distress, there are early signs that were missed, or sometimes dismissed as “normal.” Sometimes, families or professionals believe that if you move someone from their home to a dementia care community, the behaviors will go away. The opposite often happens.
For this client, there were signs of distress prior to the move (according to the family). Before initiating a move, this would have been the time to call a dementia consultant and learn non-pharmacological techniques, specific to that client, to reduce the behaviors. At this time, it may have been beneficial to work with a doctor to determine if a therapeutic dosage of medication would be helpful to facilitate the move.
Ignorance isn’t bliss.
Most people just don’t know better. It isn’t their fault. Lack of information or bad information out there, is causing this misconception. Professionals, family members, organizations, etc. all consider this type of communication to be normal for someone with dementia. On a subconscious level, that makes us less likely to try to reduce it using a person-centered approach. During the intake call with my client, her daughter had talked to her mom’s doctor about enlisting Trovato’s services. Her doctor knows Trovato and spoke very highly of our services but she said “I think your mom is too advanced to benefit from Trovato’s recommendations.” Techniques for working with someone with dementia are helpful at all stages of dementia. This is common! I often hear:
“It’s too late.”
“They’re too advanced.”
“It is what it is. This is just dementia.”
“I hear it’s just going to get worse from here, so what’s the point?”
It is never too late to use techniques to manage some behaviors that may be seen as challenging. It is not acceptable for a person with dementia to have these behaviors because it is showing that they’re in turmoil. Every human, with or without dementia, deserves a life with minimal distress.
What are other areas of dementia care that are considered “normal” but actually negatively impact the quality of care we’re providing?