Written by Zach Parlier
English Rose
It is 6:30 am in a nursing home. Roger is deep at rest under warm covers when fluorescent light suddenly fills the room as two figures enter. While his eyes struggle to adjust to the bright light, one of the figures makes a b-line for Roger’s closet while the other approaches the bedside, speaking quickly, and begins to pull his covers away. Just a few seconds ago, Roger was sound asleep, enveloped in a cocoon of comfort. Now he is disoriented, confused, and cold. “Hey, stop that! What do you think you’re doing?” he exclaims, grabbing the covers and pulling them up to his chin. The second figure is now on the other side of the bed. “Please calm down, Roger,” he says, “It’s time to get up. Don’t you want breakfast?” The caregivers, both Certified Nursing Assistants, are frustrated. They are just trying to help. But Roger does this to them every morning. When they try to pry his strong hands away from the blankets, Roger shouts, “Get out of here, damn you!” and swings a balled-up fist that narrowly misses one of the caregivers. With that, the senior caregiver decides it is time to get a nurse involved because Roger is having behaviors. This is so Roger.
The nurse decides an antipsychotic is needed and administers the medication in some chocolate pudding. Roger is reluctant at first, but this particular nurse knows just how to sweet- talk him into compliance. This is so Roger.
The nursing assistants return 30 minutes later after successfully moving five other residents from bed to breakfast. Roger is resting with his eyes open. He resists again but is far less physical this time around. At breakfast, Roger sits withdrawn and disconnected from his surroundings. At 9:00 am, he receives his regularly scheduled medications, which include additional antipsychotics, and then spends the rest of the morning sitting alone in a community room, withdrawn and sleepy. The Activities Coordinator stops by to ask if he wants to play bingo, to which he just shakes his head. This is so Roger.
•••
The scenario above is not unique or dramatic. Early in my career, I worked for several years as a nursing assistant in a reputable memory care facility. I observed and partook in this repetitive cycle with many of my patients. Back then, I thought that residents acting this way was just an unfortunate part of dementia. I was wrong.
Nurses and caregivers working in memory care are very familiar with clients like Roger. Disordered cognitive processing and limited communication ability can result in conduct that interfere with their attempts to provide care. In response, most care providers over-prescribe sedative drugs. This definitely improves caregiver efficiency. It is amazing how many call lights can be answered when everyone is tranquilized! But is this best for the person living with dementia? Is it necessary? Is it even humane?
Zach Parlier
English Rose Administrator
The answer to all these questions is “no”. At English Rose, where I currently serve as Administrator, we have spent the last 27 years proving that a pharmacological approach to care is unnecessary and unhelpful. We have found that an overreliance on medication not only compromises a person’s wellbeing but speeds the progression of their disease. The purpose of this article is to share an alternative approach to dealing with challenging client situations, one that sees the individual behind the behavior, optimizes their wellbeing, slows the progression of the disease, and eases the stress experienced by their caregivers and loved ones.
Behaviors vs. Expression: What’s Really Going on?
“Behaviors” is a term used universally throughout the care industry to describe personal expression that interferes with a caregiver’s ability to provide cares or disturbs the wellbeing of other residents. Not limited to senior care environments, the term is also common in daycare centers and special education programs to describe individual expression that is noncompliant or challenging. This creates a binary paradigm whereby a person is either compliant with caregiver expectations (i.e., behaving) or noncompliant (i.e., exhibiting behaviors).
This overly simplistic categorization fails to recognize that a person living with dementia experiences the same full range of emotions as everyone else, they just struggle in the areas of cognition and communication. It fails to recognize that every so called “behavior” is actually an expression of an underlying emotion and an attempt to communicate. Sadly, most clinical environments simply aim to eliminate the problematic conduct by finding a way to comfort the individual back into a state of calm. When that as a goal, it is no wonder they turn so quickly to medication. Sedatives are an efficient way to guarantee passivity.
But every expressive communication has a purpose. A person, for example, may be feeling overwhelmed or overstimulated, experiencing pain or discomfort, feeling rushed, disrespected, ignored, under-stimulated, or bored. Rather than try to simply eliminate the challenging expression, caregivers should try and figure out what is really going on so that they can address the underlying problem, eliminate the nuisance, or identify a creative path forward that allows their client to find a sense of safety and calm.
This approach is what we mean at English Rose when we coach our caregivers to meet their clients “where they are” and figure out “what is really going on.” Our job as caregivers is not to calibrate people so they better tolerate less-than-ideal circumstances. Our job is to figure out how we can adjust circumstances to better accommodate their needs and preferences.
All human beings experience a full range of emotions. That does not change when someone is living with dementia. An inspired caregiver looks beyond the superficial expression so that they can identify the “why” behind the communication.
Did Roger sleep well last night? Did we give him an appropriate amount of time to understand what is going on? Is he in pain? Did my lack of patience escalate the situation?
Roger is never the problem. Roger is limited in his cognitive faculties and ability to communication. His frustration is not even hard to understand — Roger is simply not ready to get out of bed. Rarely is someone living with dementia intentionally trying to hurt a caregiver when they become physically aggressive. Roger is trying to communicate, albeit in a primal way, the notion that these caregivers need to “Stop it!” That is the underlying meaning of his communication. If his caregivers would have taken a moment to consider what is really going on with Roger, they could have charted a much more compassionate forward, one that didn’t dope him up with sedative medication.
Anticipation vs. Reaction: The Appropriate Role of Antipsychotic Medications
As with any health issue, the most effective approach is to address the source of the underlying problem rather than just treat the symptoms. Recognizing expressive communication as symptoms transforms them into a call to action to figure out what is going on and explore compassionate options that mitigate a person’s distress and agitation.
Sometimes, however, expressive communications can’t be tied back to an obvious underlying cause or environmental trigger that can be easily avoided or abated. In these circumstances, keeping a journal can help identify patterns that offer insights not otherwise available when considering only a single incident. When journaling, the attending caregiver writes down contextual variables whenever their client experiences agitation or anxiety. Examples include the time of day, environmental circumstances, proceeding events, as well as attempted responses and their outcomes. Journal records are shared with the entire caregiving team and family members to help identify possible underlying causes, potential preemptive interventions, and appropriate responses.
When all efforts to identify and address the root cause of expressive communication have been exhausted, there certainly can be a role for antipsychotic medications. Psychosis and unexplained anxiety are hallmark features of many dementias and prolonged distress is harmful to a person’s wellbeing. In these circumstances, antipsychotics can be introduced in low doses to anticipate and take the edge off moments of high anxiety or debilitating confusion.
But this proactive approach, although far more effective and humane than using medication as a response to expressive communication, is only the beginning of the solution. Once an individual’s agitation has lessened and they are settled back into their surroundings, the use of medication should be tapered down so that the journey towards a more holistic approach to wellbeing continues. Unfortunately, this rarely happens in a typical care environment where most people living with dementia will live the entirety of their remaining days doped up on sedative medications, disassociated from the world around them and the people who love them. The reason for this goes back to a fundamental failure in the all-too-common approach to care that labels expressive communication as “behaviors” and classifies them as problems. In that model, if the “behavior” can be eliminated, the problem is solved.
In reality, the problem is exasperated. Consider the side effects of Quetiapine, one of the most common antipsychotics used in memory care: confusion, dizziness, faintness, loss of
balance, lightheadedness, sleepiness, changes in patterns and rhythms of speech, inability to sit still or the need to keep moving, an expressionless face, shuffling walk, and slurred speech. If you think that sounds a lot like symptoms of Alzheimer’s, you are correct. These symptoms force someone with dementia to disassociate from their environment, withdrawing deeper into themselves and away from the interpersonal connections and sensory stimulation. Yet active engagement in the world is critical to brain health, whereby social isolation and withdrawal from the world speeds the progress of cognitive decline!
Unfortunately, people staring into space zonked out on sedative drugs is a common sight in most memory care environments. This overreliance on tranquilizers to “treat” people living with dementia is a direct result of care professionals defining expressive communication as the problem rather than a symptom. This crude construct fails to recognize that people living with dementia, are real human beings who, despite cognitive and communication challenges, live with a full pallet of authentic emotions which naturally evolve as their circumstances change.
Could Roger’s response to being woken up in the morning change if his caregivers, who take the time to build trusting relationships with him, do a better job understanding his preferences? May he one day greet them with open arms rather than clenched fists?
Care providers should always watch for opportunities to taper medications and experiment with dialing back dosages. Sedatives should be regarded as band-aid solution, used as a supplemental intervention to more holistic approaches rooted in interpersonal relationships and environmental factors.
Beyond Bingo: A Better Approach to Minimizing Expressive Communication
The source of expressive communication is not always a specific trigger or a cyclical pattern. In most care settings, it is too often a product of sheer boredom. Long-term care facilities have an “Activities” department that schedules things to do throughout the day. While this is better than nothing, these rarely drum up much interest amongst residents because they are usually designed as entertainment rather than meaningful engagement.
If you polled residents in a typical memory care facility, the majority would tell you that they wish they were home. Where this (cruel) experiment gets interesting, is if you follow up the
first question by asking to which home they are referring. Most would not be able to answer, or they would describe a home they lived in long ago, often one from their childhood. The nature of memory loss is such that short-term memory usually goes first. Long-term memory often remains relatively strong throughout the disease’s progression. When someone living with dementia says that they wish they were home, they are usually referring to the feeling of being home, that sense of security, belonging, and contentedness that comes with being in a well-known environment. They long for a time in life when their days were filled with meaning and purpose. They long for familiarity and normalcy. It is our job as caregivers to help them fill that void.
The best care for people living with dementia does not just thoughtfully respond to moments of expressive communication but addresses its underlying cause by filling a person’s days with meaningful engagement and a sense of purpose, helping them expend energy and experience a full range of emotions. Doing so allays the anxiety, boredom and disorientation that give rise to expressive behaviors.
The goal of a caregiver is to help their clients replicate, as near as possible, normal life. Because what this looks like is different for each person, this approach requires a high degree of personalization. The caregiver must first know an individual’s life story, unique history, and personal preferences before they can fill their days with experiences that reflect aspects of life they cherish and with which they are most familiar. The goal is not to objective entertain residents or keep them busy to pass time. The goal is for the caregiver to serve as a conduit to what their clients love through experiences that provide meaning and purpose.
Energy expenditure is another way to avoid the boredom and purposelessness that gives rise to expressive communication. Studies show that maintaining healthy circadian rhythms is important for brain balance and mental health. If people sit around all day and do nothing, they are not exerting the normal amount of energy that helps foster physical and psychological equilibrium. Pent-up energy can often manifest itself as anxiety by evening.
It’s late in the day. I have all this energy inside of me. I’m disoriented. I’m restless. I need to get home.
Thus, the phenomenon known as ‘sundowning’. It happens every day for some people living with dementia but occurs quantifiably less often in those who are engaged in meaningful experiences and exert a reasonable amount of energy throughout the day.
What about people whose disease has progressed to such a degree that they are completely disoriented in place and time, confined to a wheelchair, and no longer verbal? From across the room, it looks like they have little joy left inside. But cognition and communication are not what give life meaning. Relationships do that. Many of these people, who in a typical care environment are written off as ‘too far gone’ to enjoy life, will light up when they see a caregiver with whom they have a special interpersonal connection. They may not be able to remember the caregiver’s name, or the context in which they are associated, but they feel connected to that person on a deeper level and know that they care. The sadness and the bleakness of life with dementia can be remarkably reduced by caregivers who have taken the time to build relationships.
Authentically connecting with someone who has advanced dementia is not magic, but it does take a certain level of empathy and presence. It involves watching for cues as to what a person is thinking or feeling. It is about meeting them where they are at and being fully present with them in every moment. It can often be expressed through the simplest of things, like knowing if someone takes one or two lumps of sugar in their coffee or putting together a Spotify playlist of their favorite songs. It might sound hyperbolic, even a bit melodramatic, but relationships are at the heart of great caregiving. Relationships are what determine a person’s wellbeing regardless of their health. Relationships may not be a cure for dementia, but they are the closest thing we have.
•••
It’s 6:15 am at English Rose. Roger is deep at rest under warm covers. Knowing that Roger is historically an early riser, a caregiver quietly enters his room and opens the blinds before the sun rises. She fills aromatherapy diffuser with essential oils, and the pleasant scent of lavender fills his room. Ten minutes later, as the sun begins to rise in the east, she gently places a hand on Roger’s shoulder and says in a soft voice, “Good morning, Roger. It’s 6:30 on a Wednesday morning. I’ve just brewed a fresh pot of coffee and am starting breakfast. One egg, over easy, the way you like it. I’ll come back in about fifteen minutes, and then we can start getting ready for the day.” Roger stirs and nods but is not yet ready to open his eyes. Before leaving the room, she taps her iPad so that the Bluetooth speaker in Roger’s room plays the album Stardust by Willie Nelson, one of his favorites.
She returns to find Roger more alert as the sunrise has made its presence known. She reminds Roger of her name, even though he knows her well, and then introduces her partner, a new caregiver training in that morning. “Nice to meet you, Roger,” the trainee says with a smile, “I’m looking forward to speaking with you later about your time in the Navy. My father spent his entire career in the army and my brother just finished a 3-year tour. I’d love to hear some stories.” Roger smiles because reminiscing about his years at sea is a favorite pastime.
The caregivers ask Roger simple questions, “Would you like to wear this shirt or that one?” Roger chooses his outfit, as he does every morning. During his personal cares, they explain clearly and slowly what they are doing so that nothing is a surprise. When helping Roger dress, they know he appreciates a sense of control, so they have Roger hold the next article of clothing and asks him to hand each item to them as needed. Throughout the morning routine, they pay close attention to his body language and facial expressions so they can notice early if he is becoming frustrated or overwhelmed. If he starts to resist, they will take a break and try again in 15 or 20 minutes.
Today is a good day. Roger has been given an opportunity to gradually transition from rest to alertness. He has maintained a sense of control. He trusts his caregivers. As he prepares to leave his room, the caregivers hand Roger, a wannabe cowboy, his trusty cowboy hat. He places it on his head and is told he looks like John Wayne. Roger looks at his caregivers and gives them a subtle wink before making his way to breakfast. This is so Roger.