“Remember, the person with dementia is not GIVING you a hard time; the person with dementia is HAVING a hard time.” – Unknown
One of the most challenging obstacles for caregivers to overcome is responding appropriately to dementia-related behavior. Expecting a person with dementia to act as if they do not have brain changes is a daily struggle because they appear “normal” in so many other ways. What you may interpret as deliberately difficult behavior is actually a very normal and expected response from a person with significant brain changes. They can no longer process their environment in the same way, and they are simply doing the best they can. It is not fair to hold them to a higher standard and it is our job as caregivers to respond appropriately based on our assessment of their behavior.
In responding appropriately, the goal is always to focus on the abilities that remain to show them that they are still capable of living a life full of purpose. When we are sidetracked by our frustration in the abilities that have been lost, it can have a significant impact on both the person with dementia and the caregiver. They may not understand why we are frustrated with them, but they will certainly register and internalize our negative reactions. And we as caregivers will inch closer to burnout, which is detrimental for everyone involved.
So what are some ways that we can ensure that we respond appropriately to our loved one’s behavior?
First, remember that this behavior is the disease talking and not the person acting out on purpose to upset you – take a deep breath and, if you need to, step outside the room for a moment to refocus. “While some might assume that the individual is being stubborn or defiant, it is very likely that they may in fact be having trouble following a set of directions due to changes in language processing,” says dementia expert, Teepa Snow.
Second, what are they trying to communicate to us through their behavior? Are they in pain? Are they depressed? Are they tired? Are they hungry? Are they agitated? Watch for their cues and make mental notes.
Third, what are they capable of doing in this moment? Are we asking too much of them or should we adjust our expectations based on how this interaction is going? Only expect what is appropriate for this specific situation, nothing more.
Fourth, respond accordingly using simple words and short phrases. Teepa Snow suggests, “When providing care, use just a few words, speak more slowly, and provide visual cues to allow for optimal processing.” How do they react?
Fifth, assess their reaction. Do you need to adjust your approach or technique? Did they understand what you were asking of them? You may need to try again using a slightly different technique or set of phrases.
And finally, thank them or give them positive reinforcement for their efforts. A person with dementia may forget what you say, but they will never forget how you make them feel.
Let’s see how this would look in action using a real-life example:
Rebecca’s dad James (diagnosed with Alzheimer’s 2 years ago) was always able to brush his teeth on his own until recently. Earlier in the week, he tried to use a tube of his hair gel instead of the toothpaste. She heard a commotion in the bathroom only to find the hair gel all over the sink and James spitting in frustration, claiming someone switched his toothpaste on purpose. Even though she explained that he mistakenly picked up the wrong tube as she cleaned up the mess in frustration, he refused to believe her and his agitation set the tone for a difficult morning. James continued to mix up the two products each day and Rebecca continued to tell him he was one responsible for the mess. He was so upset by the end of the week that he stopped brushing his teeth altogether.
Using the steps laid out above, what could she do differently?
First, James is 2 years into his Alzheimer’s journey, so this is likely just a result of the normal progression of his disease. Rebecca reminds herself that her Dad not trying to make a mess on purpose, he is genuinely confused as to why someone might have swapped his toothpaste with hair gel.
Second, based on his reaction that he was sure someone was deliberately trying to mix up his products, Rebecca addresses his agitation and responds, “oh no! I will find out who did this. In the meantime, here is your toothpaste. I’ll help you get started.”
Third, since he was making a mess, she wonders if maybe putting the toothpaste on the toothbrush for him would help. That way he can still brush his teeth on his own and complete the task with a little assistance to get started. Later that day, she also makes sure to place simple white stickers on each item with large, bold letters clearly labeling each product to avoid future confusion.
Fourth, she places the toothpaste on his toothbrush and hands it to him. “Here you go! Time to brush your teeth,” as she mimics the gesture of brushing her own teeth. “I love your smile, Dad. Let’s keep it looking great!”
Fifth, Rebecca notices that her Dad immediately calms down as he begins brushing his teeth and no longer seems agitated. Since she has removed the part of this activity that is frustrating him, he completes the task as usual. She smiles and tells him, “great job, Dad! While you were brushing your teeth, I laid out your clothes. While you get dressed, I’ll make breakfast.”
With just a few adjustments and assistance, Rebecca shows her Dad that he can still do lots of things for himself. Starting his day on such a positive note helps them both. Rebecca no longer has a mess to clean before breakfast and James retains an appropriate amount of independence based on his abilities at this stage of his Alzheimer’s disease.
In fact, now that his toothpaste and hair gel are clearly labeled, James has found the toothpaste on his own and has been able to complete the task a few times without even needing Rebecca’s assistance.
Responding appropriately to dementia-related behavior goes a long way in maintaining healthy communication between a caregiver and a person living with dementia. Try these steps and see if it helps improve your care partner relationship!