Paul's Passing Thoughts

Dementia and the Empathetic Nurse Aide

Posted in Uncategorized by Paul M. Dohse Sr. on January 16, 2021

By Paul Dohse STNA/MA-C 

Important news flash: Dementia residents know things, and are right about things; it is the nurse aide’s job to interpret their communications accordingly. Like many different conditions of cognitive decline, Dementia residents will project confusion, behaviors, and a distortion of reality to varying degrees. However, this is not a license to be dismissive towards Dementia residents, especially when the tyranny of the urgent is bearing down on a nurse aide during a shift. And for that matter, a nurse as well.

Furthermore, if a Dementia resident’s communications are not being properly vetted and interpreted, it will most certainly contribute to the resident’s decline. We will begin with the emotional and mental standpoint. Dementia residents are subject to the same emotional challenges that cognitively healthy people are subject to. That includes losing patience, depression, etc. How we communicate with such residents can either add emotional and mental challenges to their existing condition or subtract from it. If we communicate and respond to these residents unwisely or in a dismissive way, we are directly responsible for their subsequent decline. This is a subtle abuse of the worst kind.

In all that I am about to write, there is a major driving principle: they are us. They need more than our sympathy, they need our empathy. They not only need it—it’s our job. A nurse aide without empathy is no nurse aide at all. They are pretend nurse aides. Yes, in every situation with a Dementia resident, it is good to ask, “If I were them, how would I feel or what would I want done?” But, that falls a little short because there is no “if” in empathy, we are them. We put ourselves in their shoes because all of humanity is in the same boat. They are still basically just like you and me with all of the same desires and elements but in a different situation. When you see an aide executing a meal assist (no, the resident is not a “feed,” we are not taking care of cattle), and they mix all of the resident’s pureed food together into one pile on the plate, you can conclude that aide has no knowledge of empathy via this simple question: Do we mix all of our food together before we eat it? “Can I please have my chocolate cake now so I can mix together with my pork and beans?” The possibility of a humanity disconnect can cross many different spectrums of care and will always lead to overall decline in wellbeing. Our goal is the best wellbeing possible in any given situation.

As an agency nurse aide working in several different facilities across the country, I am appalled at some of the conversations I hear between Dementia residents and aides. First of all, as an aide, if you find yourself in an argument with a Dementia resident, you are not only wrong, but posturing incompetence. Shockingly, the one I hear most is an aide correcting a resident about the reality of a family member still being alive. Perception is reality for that resident. And by the way, in many circumstances, for us also. We have our own arguments with reality because of what we want to believe at times. Again, to one degree or another, we are all in the same boat. When a resident says a deceased spouse is coming for a visit, that communication is easy to interpret; it is not in the realm of reality. As aides, we use diversion at that point. In other words, we change the subject. We don’t play along because that’s a dignity issue. We meet them where they are at the best we can according to reality. Diversion usually works. You change the subject to what is being served for breakfast or what they should wear for the day. This prevents an emotional controversy and  refocuses on what is true. I would also add that it is safe territory for the aide. We listen to the same story from them over and over again as if it were the first time we heard it. Correct them if you will, ie, “You already told me that story,” but they will forget that you corrected them.

And we never use delusions to manipulate. These residents are not to be treated like children and besides, it is even wrong to manipulate children with fantasy to begin with. You don’t play along with the delusion in order to manipulate the the resident to do an ADL so your shift will run smoother. “Well, if you want to be ready for your husband’s visit in time we better hurry and do such and such.” No, change the subject to something that is today’s reality; manipulation and dignity do not coexist.

I once was assigned to an elderly gentleman at an AL facility. I knocked, and walked into the room and introduced myself. He was very much like one the guys. We talked about football and several other guy things. I left his room very excited and ruminated about how great it was going to be taking care of him and how we were going to be like friends. Further along in the day, I excitedly returned to his room to check on him. Upon entering, it became evident that he didn’t remember me or my first visit. I was stunned, and crushed. But so it is. When I collected myself, I reinterred his world on his terms, interpreted his communication, and responded in a way that delivers the best care possible. Sometimes, however, we can share in some harmless unreality. While on contract at a facility, I took care of a guy who called me by a different name every day. I rather enjoyed it. Curiously, he remained consistent with the new names throughout each day. There was no need to correct him as I knew who he was talking to. I later found out the names coincided with people he knew throughout his life. I neither affirmed his error or argued with him about it. Aides are not cognitive experts; we do not know whether or not correcting a resident will improve their cognitive condition. Never argue with a resident.

Much more could be said about emotional wellbeing, but let’s move on to some physical considerations. Moving forward, we will look at isolation and activities of daily living (ADL). Facilities are notoriously understaffed and aides are constantly under siege by the tyranny of the urgent. The urgent is whatever makes money for the facility and much of what the residents need does not make the facility money. The aide must be equally concerned with both.

The point I want to get to follows: leaving a resident in bed all day, for the most part, is a low standard of care unless absolutely necessary. It’s isolation. This, we can conclude: less activity always diminishes quality of life. The body is made to work and lack of activity leads to bodily functions shutting down. This includes the cognitive and the physical and both are interconnected. Besides, if an aide is doing what they are supposed to do, leaving a resident in bed all day is nearly as much work as getting them up. I will just tell you the way it is: nurses judge aides by how many people they get up that can get up. Even though the nurse doesn’t say anything and might even treat you with respect, do you still feel like you are being judged poorly? It’s because you are. Why am I parachuting this into the subject? Because activity experiences for those with Dementia is even more important for them than those who are cognitively healthy. The latter are more able to handle it emotionally. In addition, commonsense tells us that less cognitive activity will lead to more cognitive decline.

Moreover, in all cases, too much time in bed can lead to pressure sores, which in and of themselves can lead to significant health problems, and additional issues that Dementia residents do not need. Inactivity can also lead to constipation, loss of appetite, sleep disruption, depression…really, the list goes on and on. Hence, we must remember that whatever is a challenge for the cognitive healthy person is more so for the one who isn’t, especially when there is an inability to describe symptoms to others.

This brings us back to interpreting the actions and communications of those with Dementia. They do know some things definitively and they need to be heard. Complaining about pain is not always a behavior, it may be real. Nurse aides need to recognize the pain and evaluate it (in regard to what we report to the nurse) through verbal and non-verbal criteria. Too many nurse aides conveniently chalk it up to behavior because their pain isn’t our pain. That is, we forget how much we disdain being in pain, and forget they are no different from us. Lack of empathy assumes they are of a different sort of humanity than we are or at least a lesser one.  It should be more like this: “Joe is complaining of bad pain in his legs (Joe is screaming, “My legs! my legs! over and over again nonstop and driving everyone on the hall crazy). Here are his vitals (let the nurse evaluate). I took my hand and pressed lightly on his leg while asking him where on his leg that it hurt. During this time, he stopped yelling, until I touched his knees. His knees look swollen to me. I think he has having some real pain.” This is what we need to do, but the nurse will probably pass out.

Meet Bob, not his real name. He is a dementia resident somewhere in the United States. His agency aide has noted on the care sheet that he is incontinent. Yet, Bob incessantly yells “help, help, help” nonstop for long periods of time. When the aide asks what he needs, Bob insists on being helped to the bathroom. Bob must be transferred with a lift, and the aide just returned Bob to his wheelchair after transferring him to his bed to check his brief. The aide assumes Bob is being behavioral, and tries to divert him to no avail. Finally, after Bob yells “help” nonstop for more than 30 minutes, the aide figures out a way to get Bob on the toilet. Bob then unleashed a massive bowel movement. The bowel movement was also formed, which means it couldn’t have been completely discharged with a brief on. Try it sometime. Perhaps STNA schools should require students to have a bowel movement in a Depends in order to get a passing grade. It would be less abusive because the student could sit up, push some out, and then flatten the formed bowel movement against their bottom a little at a time. The student should then be required to sit in it for at least an hour and while eating a meal as well. Be sure to enjoy the meal.

Though gross to think about, that’s empathy. You enter into another person’s life and try to imagine what it would be like for you. If  you were in that situation, what would you want others to do? Well, that’s what you do because you have empathy. And that’s what you do for Dementia residents because you have empathy, and that means…

…you are a real nurse aide.

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