May 07, 2021
Excerpt from Hilltop Heights:
Lew raised his hand to knock, but before he could do so a middle aged woman hollered at him from down the hall, "Lew! That's not your room! That's the wrong room, Lew!"
Lew smiled tolerantly and reminded himself that she was just trying to help.
"Well, you see," he explained, "I made a grave error earlier today, and I believed the phone was broken. The phone is not in fact broken, and I will be on call tonight, as I always am. The mistake was mine, I apologize."
"Well, this isn't your room. You can't go in there."
Lew sighed inwardly. He always tried to show respect to the workers, but it wasn't always easy. The aide directed him to sit down, and Lew obliged.
To be fair, we dementia caregivers are doing our best, but we don’t always realize how much easier we could make it for our folks with dementia if we did a few things differently!
Like other behavioral communication, catastrophic reactions don’t come from “out of nowhere”, although we may not see everything leading up to one.
Catastrophic reactions communicate the message: This is all too much for me right now!
Many of us know the feeling of being so overwhelmed that we react disproportionately with the situation. Every day, people with dementia handle so much more than we can imagine! What can we do to reduce their burden?
A single mom sighs heavily. She’s beyond exhausted from working two jobs and battling the perpetual feeling that she lacks the time, money and energy to do what she wants. She leafs through the mail in irritation. A note from the school reports that her son has been acting up – they need to meet. The final notice from the electric company threatens to shut off the power. She takes a breath and tosses out the junk mail. She places the “important” envelopes on top of a tower of similarly stressful situations demanding energy she can’t afford.
Meanwhile, her three young children clamor around her. They fight over scraps of her attention, starving for it. She takes another breath and tries to respond, but every answer is interrupted by another rapid-fire question before she can finish. “Mom, can I have those? Can I do this? Will you do that for me?!”
Her eyes widen ever so slightly as she breathes deeply again, summoning more patience from who-knows-where. She can’t really hear what the kids are saying at this point. Her brain is over saturated and running on empty. She hasn’t slept more than five hours a night in as long as she can remember, and she feels lucky if she can sneak in more than two showers a week.
Her son, at seven years old her eldest child, hollers suddenly. “Mom! She pushed me!”
“I did NOT! He pushed ME!”
And it’s too much. The last straw. It's more than her exhausted brain and body can take. She screams at the children, “Shut up! Leave me ALONE!”
She’s had a catastrophic reaction, so to speak, and she feels worse than ever about everything.
We don’t usually use the term “catastrophic reaction” when someone without brain impairment lashes out when they’re feeling overwhelmed and unable to cope. (Although, I’m not sure why not. Going without sleep or self-care for long enough certainly does result in functional brain “impairment”, even if we don’t necessarily think of it in those terms. Wouldn’t it be nice if we could all function at our highest potential at all times? How much better off would we, and our society, be? But, I digress...)
According to the APA Dictionary of Psychology, a catastrophic reaction is defined as:
1. a breakdown in the ability to cope with a threatening or traumatic situation. The individual experiences acute feelings of inadequacy, anxiety, frustration, and helplessness.
2. highly emotional behavior (extreme anxiety, sudden crying, aggressive or hostile behavior, etc.) sometimes observed in individuals who have brain damage, including those with aphasia. The origin of this behavior remains unclear, although U.S. neurologist D. Frank Benson (1928–1996) ascribed such reactions to individuals’ frustration, embarrassment, or agitation at their struggle to communicate or perform tasks they had previously performed with ease.
When a person with dementia experiences a catastrophic reaction, it’s often described as coming from out of “nowhere”. However, although the factors may not be obvious, they do exist!
How easy would it be to judge the single mom in the example for yelling at the kids when all you see is a single snapshot of the situation? Knowing a little more of the context of what is going on behind the scenes – she’s exhausted, neglecting her self-care, stressed on multiple fronts and completely overwhelmed – makes the situation seem much more relatable.
Not that yelling at kids is okay, but many of us can relate to reacting “catastrophically” — inappropriately, or out of proportion with the situation — when under intense pressure and stress.
We’d do well to remember that those with dementia often have an enormous amount of exhaustion and stress just from the effort of making it through the day with their limitations and challenges.
A person with heart failure can’t pump blood and oxygen as efficiently through their body. A person with kidney failure can’t filter toxins from their blood as efficiently. And a person with brain failure – dementia – can’t process information, stimulation or thoughts as efficiently.
This alone can lead to a bottleneck of brain processing – not unlike a slow or virused computer. Add in disorientation, misperceptions, delusional beliefs and inability to recognize or communicate unmet needs, and even a good day is difficult almost beyond comprehension for a person with dementia. The bad days can be off the charts.
Research has shown that when a person has to exert effort to understand what someone is saying, whether due to hearing loss or dementia, the result is often persistent, significant fatigue due to a phenomenon known as cognitive load.
Cognitive load theory holds that even the sharpest minds can process only so much information at a time. Far from unique to dementia, it applies to all people in all stages of their lives. College students in their prime often experience this limit when they are overburdened with classes and stressors.
When the brain is given too much to handle, it struggles. Thinking becomes clouded, judgment impaired, and abilities reduce. There are three prominent contributors to cognitive overload:
- Splitting attention
- Trying to keep up with someone who thinks you have more information than you actually do
If these can cause cognitive overload in healthy college students, imagine their effect on a brain whose processing ability is already damaged by dementia!
Our coping ability waxes and wanes with various factors. Sometimes we can handle more than we can other times. When we are stressed, run down or ill, our coping skills deteriorate. When a trigger is too much to cope with in the moment, a catastrophic reaction results.
Almost any stressful, frustrating or frightening situation can become the last straw.
- Unmet needs (fatigue, hunger, infection, illness, pain)
- Poor physical, mental, emotional, social or spiritual health
- Stress, anxiety, depression, grief or loneliness
- Feeling rushed
- Feeling frustrated
- Feeling pressured
- Feeling unable to complete a task (too many steps)
- Feeling desperate (to find a bathroom, to take care of something important)
- Others’ emotions
- Too much noise
- Too many conversations in the room
- Talking over the person, or talking about them as if they aren’t there
- Inability to understand instructions or requests
- Delusional thoughts or hallucinations
- Unfamiliar locations / feeling disorientated to place
- Misperceiving environmental stimulation (for example, thinking that what’s happening on television is happening here and now, or believing that the people whispering down the hall are plotting harm)
Simply put, there are conditions that affect our coping ability, and there are situations which require us to cope. If we can preserve and buffer coping skills – by meeting needs and supporting holistic health – we have more capacity to handle the triggers which arise. When we reduce the number of potentially triggering situations, we put less strain on our ability to cope.
With all of the challenges in the life of a person with dementia, sometimes our behavior is the straw that breaks the camel’s back. There are a few things we caregivers are prone to do that can trigger a catastrophic reaction.
We tend to talk too much, or at the wrong times. They’re trying to focus on one thing and we’re chattering incessantly about something else. Talking too much is a common trigger for frustration in people with dementia – if we can figure out how to stop talking so much, it helps a lot.
Speaking too quickly, or not allowing time to formulate responses, can quickly overload the brain. Instead, slow down, speak clearly, enunciate well, and maintain a normal, if somewhat slowed, rhythm of speech.
Allow plenty of time for the person to process and formulate an answer. A full 60-90 seconds is necessary in some cases.
Asking questions can be a great way to give someone with dementia choice and control – and it should absolutely be used for that purpose – but we need to be aware that answering questions demands a great deal of brain power. We must be judicious about which questions we ask, and when, and we need to allow plenty of time to answer when we do.
Multiple choice questions, or those that require a simple yes or no, tend to be less demanding of brain power.
If we push someone with dementia to do something that makes them feel fearful, painful or anxious, it can easily trigger a defensive response.
Because their abilities may vary from day to day, or moment to moment due to a number of factors, it’s not safe to assume that someone can do something today that they could do yesterday.
We need to constantly tune in to where they are in each moment so we don’t expect too much from them.
It can be very stressful to have a big problem, and not get the response or help we need from someone else.
As caregivers, it’s easy to think we’re being reassuring when we’re actually making the person feel we’re dismissing their concerns. Telling someone that “everything’s okay” won’t generally help them feel that everything is okay. We need to enter their reality and help them feel we understand their concerns and are taking them seriously.
The environment often puts a lot of strain on a person with dementia. It takes brain energy to process every noise, every movement, and every single thing that happens around us: conversations, television chatter, telephone rings and alerts, dishes clinking, dishwashers and microwaves whirring… It all contributes to the overall din, and every bit must be processed by every brain in the room.
Fully functioning brains have enough bandwidth that we don’t usually notice the energy drain to process all this stimulation. (Although, some do notice feeling fatigued after spending time in a crowded mall or a noisy restaurant.)
Healthy brains automatically filter out background noise and stimulation, categorizing which warrant our attention without our conscious attention. This makes it easy to forget how much stimulation there is unless we make a special point to do so.
Brains with limited processing capacity, however, use a lot of their available energy with this task.
When we make a point to pay attention to background noise, and minimize it when possible, we help preserve the brain energy and coping ability of the person with dementia.
The above are just a few examples of what we can do to increase or decrease the likelihood of a catastrophic reaction in someone with dementia. It may not really be our “fault”, but when we remember and employ these points, we can make a profound difference in the lives of the people we are supporting.
It’s the difference between not doing anything “wrong” and becoming the “perfectly behaved children” that could have made a difference for the mom in the example.
The children in the example weren’t really doing anything wrong – they’re just being kids. After all, kids are supposed to want and need their mom’s attention. They are supposed to rely on Mom to set boundaries and communicate limits. But in that moment, their behavior was the straw that broke the camel’s back.
Do you think that Mom would have snapped if they were waiting patiently for her attention, playing quietly in the corner, or helping pick up around the house? Probably not! It might have even sparked appreciation and good will in Mom’s heart that could have made some of her other stresses more bearable.
Just like the children in the example, caregivers aren’t necessarily doing anything wrong when we inadvertently ask too much from our people with dementia. We may expect them to be able to do what they usually do, because we’re not privy to what is going on inside their mind and body.
As much as we can be the “perfect” children who pick up after ourselves, and play quietly and kindly with our siblings, the more we can enable our “mom” – our people with dementia – to live at their best.
If you find yourself in the midst of a catastrophic reaction, focus primarily on reducing stimulation and helping the person feel heard and validated.
Turn off the television, relocate others. Turning down the lights may help as well. Allow time and space for the person to settle down, assuring their safety as unobtrusively as possible.
If talking is necessary, keep words to a minimum. It’s usually helpful to keep your voice calm and reassuring. Sometimes it’s necessary to validate their emotions or beliefs with a strong voice – always in their defense, and aimed at what they perceive to be the threat.
Mirror their facial expression, and show them that their concerns are important because they are important.
Address any unmet needs, if possible, without asking for any more brain energy from them. ie: don’t ask them for answers or decisions. If you suspect they are hungry, don’t ask what they want. Just get something you know they like and place it within reach.
After the person has calmed down, try to determine what caused the reaction. Look for signs of illness, discomfort or unmet needs, and develop a plan to reduce the likelihood it will occur again.
We can’t know for sure what is happening in their mind or body. They may be having pain, anxiety, disturbing thoughts or a down day. We can, however, look for clues... in their behavior, their non-verbal communication and in what we know about what’s going on in their lives.
- How have they been sleeping?
- How have they been eating?
- Is their elimination regular, or have they shown signs of constipation, infection or other troubles?
- What have they been talking about recently?
- What’s on the television, or going on around them?
- Are there signs of potential pain?
When we can identify some of the many factors at play, we gain better context as to what might have triggered the catastrophic reaction – and, ideally, how to prevent another one from being triggered in the future.
How can we caregivers move from “not doing anything wrong” towards “being perfect”? While some of the stressors and triggers are beyond our control, many of them are not.
- We can have a powerful influence over the calm or chaos of the surroundings, limiting noise and stimulation to a therapeutic level.
- We can take care to speak to the person, not around them.
- We can simplify tasks into manageable steps.
- We can pay attention to when they are concentrating on a task, and not ask for their attention in those moments.
- We can do our best to anticipate their needs and meet them proactively.
- We can pay attention in each moment to determine where they are in this one, and then meet them there.
- We can offer them more stimulation, choice or control when they need it, and reduce demand when they need less.
When a catastrophic reaction does happen, don’t feel too bad. Understand that we’re all just humans, trying our best. We are, and they are too. They just got overwhelmed with everything on their plate at that moment.
Do try to learn from the experience, and try to figure out if there is anything we can do to maximize their coping capacity and minimize any triggers.