A required skill for quality dementia care is to be able to prevent and safely de-escalate distress behaviors such as pacing, cursing, threatening, and hitting. None of us want to get hurt on the job or verbally abused, and unfortunately it happens. The key to reducing this risk (and to provide high quality care for those living with dementia), is to make the necessary shift to empowerment, driven by informed and compassionate understandings. This will enable us to prevent and de-escalate behaviors safely, avoiding a crisis situation for all involved. Let’s explore this particularly important aspect of caring for a person with dementia.

About Behavioral and Psychological Symptoms of Dementia (BPSD)

I’m not particularly fussy about the words we use, although I know some people are steadfast about their desire to replace the word “behavior” with something else such as “reaction,” or “communication,” etc. That’s certainly fine. The more common term used in research and literature is Behavioral and Psychological Symptoms of Dementia (BPSD).

I will use some terms interchangeably throughout this blog. But no matter what we call “behaviors”, what I care most about is assuring we all understand and agree upon core beliefs and concepts that shape our perceptions and how we address the “behaviors” we commonly see in those living with dementia.

Research suggests BPSD are quite common, doesn’t have one single cause, and caregiver training can help.  According to a July 21, 2022, published article entitled Behavioral and Psychological Symptoms in Dementia, authored by Nancy Cloak and Yasir Al Khalili:

 “The majority of patients with dementia will experience BPSD at some point and studies found, up to 97% of community-dwelling patients with dementia will experience up to one symptom and will have a significant impact on prognosis, institutionalization, and caregiver well-being. Symptom severity increases with time and correlates with institutional placement. Biology, prior experiences (e.g., PTSD) and the current environment all contribute.

Some examples of non-biological causes are:

• Problematic caregiver communication styles
• Environmental factors (e.g., sensory over-or under-stimulation, or surroundings that are too hot, cold, or loud) also contribute to BPSD.
• From a theoretical perspective, three main categories of environmental contributions have been described: unmet needs (e.g., for food, fluid, companionship), behavioral/learning (e.g., when unwanted behavior is unwittingly reinforced, such as by providing attention when a patient calls out) and patient-environment mismatch (e.g., when a caregiver’s expectations exceed a patient’s capability).”

Understanding How to Deescalate Behaviors: At the Heart of Best Practice is Caregiver Training

Research and my own professional experience demonstrate how valuable it is for caregivers to be trained to reduce or eliminate many of the common causes of distress behaviors named above.

Cloak and Al Khalili reported caregiver training to be effective in both reducing a range of BPSD as well as improving caregiver well-being. They stated, “Caregiver training typically focuses on:

• Understanding behavioral disturbances as responses to discomfort, unmet needs, or attempts to communicate.
• Creating soothing environments with optimal levels of stimulation.
• Responding to patients in ways that de-escalate problematic behaviors (e.g., distraction, giving patients clear instructions and simple choices, not rewarding the behaviors).”

Our Dementia Capable Care (DCC) training program is built upon proven models and empowers the learner with all the above knowledge and skills. DCC training (a) prioritizes use of personhood, (b) teaches specific techniques to prevent and safely de-escalate distress behaviors, and (c) focuses on understanding the stages of dementia so the capacity of the person in care is anticipated and supported appropriately by the caregiver.

But before a caregiver is ready to learn these important skills, I believe we must prime the learner for learning by addressing some barriers that shouldn’t be ignored.

1. We must reframe and normalize the word “behavior.” Behavior often seems to insinuate something negative, but it’s not, really. “Behavior” is a neutral term. Rethink the perspective you hold about this word because it matters. Begin to think of it simply as meaning “human behavior” and not a symptom of dementia, and not something that just happens.

• Behavior refers to our actions and non-verbal expressions. We all communicate through behavior.  This is absolutely no different for a person with dementia. They too will communicate non-verbally, through their behaviors. And as dementia advances, the ability to use words declines, creating more reliance on non-verbal communication to tell us what they want, need, and how they feel.

2. We must see any “problem behavior” through the lens of a “normal response to the condition or circumstance,” leading us to always ask “what and why?”

• Distress behaviors, like resistance, agitation, or tearfulness, when expressed by a person with dementia, are often their way of telling you something is wrong. In fact, they may be suffering due to pain, discomfort, fear, anxiety, loneliness etc.
• That’s why it is always important to take a reasonable, compassionate approach and perspective when someone exhibits a distress behavior. Ask yourself, “Why could this person be in distress?” and, “How can I do something different to help them feel better?”
• Afterall this is what we do in childcare. We anticipate their stressors and try to avoid them. We are understanding of a child’s behavioral releases and reactions because we know they are limited cognitively, emotionally, and verbally, due to their developmental age. They become easily overwhelmed and tell us through behavior. In childcare we are understanding and proactive.
• As an example, if we took a toddler out for the day and a few hours into the outing they become cranky and have a “tantrum,” what would you think could be the trigger for this distress behavior reaction? Maybe they are hungry or over-tired? The same is often true in dementia care. A person has a progressively lowered stress threshold due to dementia, and this can cause stress reactions. Just as we do in childcare, we must think ahead to be sure basic needs are met and stress due to fatigue, overstimulation, and other unmet needs, don’t mount.
• And, when we see distress behavior this way, and think reasonably, we know we shouldn’t turn to drugs to “control” the behavior, as a first course of action. Compassionate dementia care can be achieved through this lens of reason, helping to reduce the harmful impacts of unnecessary antipsychotic pharmaceuticals.

Bottom line is we must humanize, and compassionately care for every aspect of every “distress behavior.” That means, realizing that “distress” is a synonym for suffering. So, the person in care, who is exhibiting distress behaviors, is telling you they are suffering. Leaving them to suffer is certainly not ok. Knowing this helps us all want to learn how to help.

Using Dementia Capable Care (DCC) for Distress Behavior Management

 As I shared, it’s important to use non-pharmacological intervention first (unless in an emergency). Non-pharmacological approaches require us to understand the impact and influence of the caregiver and the physical surroundings on a person with dementia. Therapeutic use of self and adapting the environment to minimize stressors are core components of successful non-pharmacological intervention to prevent and reduce distress behaviors.

Below are a few basic recommendations all caregivers can use to reduce distress behaviors.

 Don’ts:

• Don’t ignore communications of distress.
• Don’t push through to get the task done.

If you do one of these things, it is like throwing an accelerant/fuel on an ember. A minor problem can quickly  develop into a crisis.

 Do’s:

• PREVENTION: Take what you know about the person in care and the care situation and plan how to prevent a distress reaction. Think about what could create discomfort, fear, loneliness, becoming overwhelmed, agitated, or anxious, for this person. Put plans into action helping the person to not experience these feelings.
• INTERVENTION: Always, observe, stop, and respond. As soon as you see behavior changing, do what you can to make the person feel better and try to discover and alleviate the trigger. The best response to calm/deescalate will be determined by personhood, cognitive level, and behavior level strategies.

All “behaviors” are not equal. Skilled care means we match our response to the behavior level.

Ok…full disclosure…I didn’t get this for years and it was a huge handicap for a successful dementia care practice. I literally lumped most behaviors in one giant box and called them behaviors. But in actuality, behaviors occur on a continuum of severity.

In our DCC training, we describe behavior levels using the Crisis Development Model ℠. Behaviors typically escalate in a predictable way and there are specific approaches to use, meeting the person where they are in the behavior levels, to effectively deescalate the situation.

When we learn the different behavior severity levels, we can categorize the behavior we see and then deploy the corresponding approach to deescalate. The goal is to intervene at the earliest point to keep the severity to a minimum.

Also, caregivers are asked to describe, document, monitor, and reduce “behavior” frequency and severity. Frequency is straightforward but severity can leave most of us scratching our heads as to how to define. That’s one great reason we must know how to place the behaviors into levels of escalation. We can then monitor and measure the results of our interventions. For example, we can see the behavior level drop with the right approaches, and that is a win.

Why Preventing and Managing Distress Behaviors (Nonpharmacologically) Matters so Much

Instead of writing this blog, I could literally author a book about why it is so critical for professionals and all caregivers to have the basic knowledge and skills to prevent and de-escalate distress behaviors. Because distress behaviors impact so many people (individual in care, staff, community at large), we can’t afford NOT to put a training solution in place that will impact ALL of these individuals in a positive and meaningful way. Let’s briefly summarize some specific reasons why it matters so much:

• Distress behaviors gravely impact the person in care: They interfere with quality of life, decrease level of function, and put them at risk for accidents and injuries. And if antipsychotic medications are used to “control” behaviors, it should be known that these come with an FDA issued black box warning label. Antipsychotics earned a black box warning because they are associated with increased rates of stroke and death in older adults with dementia. These meds were developed for other diagnosis like schizophrenia and are being used off-label for dementia related distress behaviors.
• Distress behaviors impact others: There is a high risk of injury to caregivers and others in the area when a crisis situation happens. Resident on resident aggression is common. And, one study showed 7 out of 10 nurses working in long-term care said they expected to go to work and get injured on the job (due to resident aggression). It doesn’t have to be this way and I suspect this plays a role in high staff turnover rates.

Possessing this new knowledge and understandings, and holding it in our heart opens channels for learning and provision of better dementia care. Now that you know that most distress behaviors are a communication that the person is suffering, telling us something is wrong, the reasonable thing is to do something skilled and compassionate about it. And that’s good for everyone involved! And it’s one more way we work together to create a dementia capable society.

Want to hear Kim talk a bit more on this important topic? Check out Kim’s newly released 2-part installment of the “Let’s Talk about Dementia” series called: Distress Behavior: Understanding “Behavior” in a New and Empowering Way Part 1 and Part 2.  

Want to learn how to prevent and safely de-escalate distress behaviors seen in dementia?  To learn more or to register for one of our Dementia Capable Care training programs go to our solutions page, or contact us:          Call: 866.954.1910 or Email: dcssolutions@crisisprevention.com for more information.

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Posted: May 2024

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