Let's Look at Dementia a Different Way

by Kenneth Rayman on September 26, 2017


Watching the documentary “Alive Inside” made me realize that I never shared my very first ever article with this community. I had been looking for ways to understand Alzhiemer’s and Dementia and came up empty after starting in Senior Care. I heard this song one day randomly and as usual started to think deep about the lyrics when I’m going through a tough time and saw a way to understand the piece of advice that everyone told me, “Meet them in their world.” Similar to my article “Antidote to Regret,” this song by Stone Sour started my process of understanding a terrible illness.

Let’s Look at Dementia a Different Way (originally published July 22, 2016 on LinkedIn)

When searching for ways to understand Alzheimer’s and Dementia, coming from a non-medical background and just starting in the industry, I began to read and watch all that I could on the subject; I wanted to understand how to effectively work with the individuals with mid to end stage dementia and Alzheimer’s in my unit. I also wanted to understand the disease itself. My mentors told me to “bring myself into their world,” a saying also championed by Jolene Brackey in her book “Creating Moments of Joy,” when she advocates the need to “live their reality (pg. 40)” and that they are doing the best they can with the abilities they still have, also championed by Brackey (pg. 25). But for someone, like me, who wants to get to the heart of the matter through research to understand the core of it, I wanted to look for more.

I had a minor breakthrough listening to a song by a popular Modern Rock group called Stone Sour named “Through Glass.” Listening to the lyrics I began to apply them to what I saw in the memory unit. The lyrics themselves were cryptic and seemed to be sung as a riddle, which I connected with the way a resident with cognitive challenges communicates with word association difficulties, nonverbal cues, and mannerisms. The lyrical imagery seemed to express disbelief at the world around them and feeling lost, ignored, or even marginalized, just as a resident does that watches and reacts to what a caregiver does, sometimes with disbelief, anger, or disgust because they may feel embarrassed or patronized or violated in some way. To them and where they are in the disease, they may believe they are in a different timeframe; they may have children or a significant other to look after or “know” that they need to go to work soon, and see some stranger coming in and “helping” them in some very personal way or invading their space saying, “I’m here to help you.”

The same goes for the resident who has lost his/her ability to verbally communicate or needs help with feeding or ambulating and observes the environment around them including the nurses and aides, while the aide/nurse stops to discuss something on the way to the resident’s destination in the community. I saw that resident, in the lyrics, looking at the staff members and wondering why they can’t speak up that he/she knows that the staff are talking about them and wants them to know they can hear every word.

The song was described by Corey Taylor, the lead singer, as a song that was originally written as an opinion of disgust about the state of music itself, but as art is open to interpretation I took my idea and ran with it. As the ability to distinguish and interpret time diminishes I related the first line with the disease overall and a resident wondering about the environment they’re in, “I’m looking at you through the glass; Don’t know how much time has passed, oh God it feels like forever; No one ever tells you that forever feels like home, sitting all alone inside your head.” The last part of the lyric, to me, suggested the resident took some solace in seeing the nearby aide that he/she may not remember but, as everyone counseled me, remembers the feeling and perception associated with the individual.

The next line suggests the nurse or aide has come to check on the resident and the resident thinks to themselves, “How do you feel? That is the question; But I forget, you don’t expect an easy answer.” Word association and nonverbal communication creates a challenge to where the staff member has to think back to the resident’s history and if they say a certain phrase, they mean this or that. Nonverbal communication can be a little easier though, with training and experience, to decipher, such as a resident pulling at their pants repeatedly might suggest that they need to go to the bathroom. “When something like a soul becomes initialized, folded up like paper dolls and little notes; You can’t expect a bit of hope,” the resident, here, is stuck interpreting the nurse or aide’s reply to them and their own confusion through their OWN word association. When Corey sings, “So while you’re outside looking in; Describing what you see; Remember what you’re staring at is me,” the nonverbal resident in the hallway is listening to the nurse and aide talk like he/she isn’t there, trying to cope with anger, sadness, or disgust.

“How much is real? So much to question; An epidemic of the mannequins contaminating everything,” can be interpreted as the resident is questioning their environment. Maybe they recognize some of the things in their bedroom but just maybe, then someone, an aide, smiling housekeeper, or family member, comes in and starts to tidy everything up. But the resident had “arranged” the stuff that is now being tidied and this “stranger” is upsetting the little bit of order they made for themselves; now they can’t remember how they got their “order” in the first place.

“When thought came from the heart, it never did right from the start,” while the housekeeper, aide, family member may have had good intentions, the resident doesn’t see it this way because you may not have involved them in the choice. Something as simple as, “Oh this looks lovely but I see a little dirt on it and I know you have guests coming over soon, do you mind if I wash it and bring right back?” could potentially avoid any outbursts of emotion from a disgruntled resident. The next two lines talk about a resident’s memory resetting about the situation in front of them, “Before you tell yourself it’s just a different scene; Remember it’s just different from what you’ve seen.”

The closing bridge of the song goes back and forth asking who are “the stars that shine for you” and “the stars that lie to you.” This could suggest the internal random firings of neurons that make split second connections that give the resident some idea of what is going on around them or who/where/when they are but are fleeting moments that are gone within a flash.

When I made this connection, it helped me to see how to bring myself into their world and go along with the story that was being told. I then understood how to work with the resident who was loving and sweet the day before but today thinks I’m stealing all of her things because I’m helping them clean their room. I’ve shared this thought process with a few others but have never been able to articulate my thoughts before, until now, to write this. If someone is wanting to see what the world of dementia may be like for an individual with it, I hope this may make a light bulb go off for them as it did for me.

References:

Brackey, J. (2007). Creating Moments of Joy for the Person with Alzheimer’s or Dementia, 4th ed. West
Lafayette, Indiana: Purdue University Press

Corey Taylor talks about the making of “Through Glass” 12/9 [Video file]. Retrieved from
https://www.youtube.com/watch?v=6101QpZbJ4w&index=86

Through Glass, lyrics. (n.d.). Retrieved June 10, 2016 from Google Play Music:
https://play.google.com/…/prev…/Tlgvnv4wbgilszdgmr7wigyngwi…
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