Do you know someone living with dementia who becomes anxious, agitated, or resistive? My guess is you do. Behaviors are the number one reason for long-term care admission and many with dementia experience behaviors that can overwhelm loved ones—such as anxiety, verbal or physical aggression, apathy, depression, or paranoia.  

Because these behaviors are common there tends to be a pervasive belief that these types of “behaviors” are just a symptom of dementia. We must dispel this myth, because it often leads to unnecessary suffering and an overreliance on pharmacological approaches to control behavior.

Let’s explore.

Behavior is something every human being has. Behavior is the way we communicate our wants and needs through actions, words and activities. “Distress” behavior is a communication that something is wrong, with distress meaning “extreme anxiety, sorrow, or pain,” and synonymous with suffering. No wonder individuals with dementia are often described as “suffering from dementia.” They likely are indeed suffering if we hold restrictive beliefs, and if they are enveloped by feelings of severe distress in day-to-day life.

Distress behaviors are NOT inevitable just because someone has dementia.

Those living with dementia have the capacity to live in emotional well-being all or much of the time. And the truth is we as care partners are not powerless when it comes to distress behaviors.  We likely can prevent or alleviate the frequency and severity of most distress behaviors with empathetic, compassionate, and skilled care.

What are distress triggers?

Anticipating or identifying the source of distress is a key behavior management strategy. Let’s start by considering the very normal concept of cause and effect. We all have stress behavior. Think about it: What makes you stressed, anxious, uncomfortable, or agitated?

I’ll jump in here and say that I can identify two things that cause my stress: being cold and in small, enclosed spaces. One more: I MUST start my day with a cup of coffee. Being put in a cold, small space WITHOUT COFFEE would definitely trigger my distress.

If cold, I will be uncomfortable and agitated. If in a small, enclosed place, I will feel claustrophobic and frightened, wanting to get out. If my day starts without a nice warm cup of coffee in my hand, I will feel out of sorts and anxious. What about you? What triggers your stress and distress behaviors?

Taking a moment to diagnose distress behavior.

Our goal then as care providers is to understand behavior is a very normal form of communication. Distress behavior is being used to express a problem or an unmet want or need. We must stop, determine, and alleviate the cause of stress. When looking for triggers of stress and distress, consider what is happening both inside and outside the person.

Inside: Are they hungry and want something to eat? Are they feeling uncomfortable because they need to use the bathroom? Are they in pain because they have arthritis and need their pain med, which they didn’t get because it is PRN and they couldn’t tell the nurse, through their words, that they were in pain?

Outside: Is the room full of stimulation that they can’t get away from and they want and need some peace and quiet? The staff is talking to one another loudly across the room, families are visiting with grandchildren, the TV is on in the corner of the room, etc. Wow. That would be enough for anyone to need a quiet break. But those with dementia are unfortunately dependent on us to control their environment, meaning we make sure it isn’t so busy, noisy, or distracting that it creates stress. We must anticipate and meet their needs. If we don’t, they will communicate their distress through behaviors.

To understand how normal this concept is, think about a 2-year old. How do they tell us they are feeling uncomfortable, hungry, overtired, or scared? Their cognitive and communication abilities haven’t developed enough for them to express their wants, needs, or feelings through words, so they tell us through behavior. They may cry, hit, run away, or resist when these feelings of stress emerge and overwhelm them. Parents get it. Parents perceive these behaviors as a communication that something is wrong, then they try to address the problem and put plans in place to reduce the likelihood of it occurring again.

This is very similar to dementia care. While we must NEVER treat an adult with dementia like a child, taking a page out of the human development support manual can inform our approach and foster critical understanding and empathy, while empowering us to more effectively prevent distress behavior.

Common distress behaviors and triggers in persons with dementia.

Sundowning: becoming more agitated or anxious later in the day
Common triggers: From experience I primarily aspire to the Progressively Lowered Stress Threshold Theory which tells us persons with dementia can reach their stress threshold sooner than most and then they have a meltdown.

TIP: To minimize sundowning we have plans in place to ensure the person is well rested and not overstimulated. This has worked wonders as a prevention strategy.

Resistance to care or participation
Common triggers: Fear, feeling violated or threatened, or not finding the experience (leisure activity, social activity, or ADL) of value.

TIP: To alleviate resistance we have found it very helpful to prepare for success by developing trust and therapeutic rapport each time you begin your interaction. Don’t count on the person remembering you because, due to their dementia, they may not. Create that trusting relationship before each interaction. Develop conversation and relationships around something the person in care finds meaningful. Also, be sure to ALWAYS show respect because if we take control away or ignore needs for privacy (such as during a shower) it can rightfully trigger resistance. And for those who don’t value what you are asking them to do, tap into their preferences.

Anxiety: pacing, crying, looking for home
Common triggers: Fear, loneliness, loss of sense of self.

TIP: To alleviate signs of anxiety, we have found success by going overboard to meet those basic needs of feeling safe and loved. And be sure to build a relationship between you and the client (and between residents if you work in a senior living community) as friendships matter to help the person feel at home. I have never seen anyone looking for the bricks and mortar of home. They are looking for what home represents: safety, love, belonging, familiarity. When those feelings are absent, they seek home. Finally, we have found it very helpful to use person-centered care in which all activities and daily routines represent lifelong habits, routines, and preferences. Otherwise, it can leave the person feeling as if identity theft has occurred. Sadly, I heard one person cry out, “Help! I am looking for my friends and myself!” If that doesn’t represent the deepest level of fear and anxiety, I don’t know what does.

To summarize, a person with dementia isn’t behaving badly just “because.” They have lost much of their cognitive and communication ability, and because of changes to their brain, they are vulnerable to stress and have difficulty regulating those emotions.

They will communicate feelings of distress more through behavior than words. They need those around them to see it this way, and to NOT perceive behaviors as an inevitable symptom of dementia that needs medicating or something they are doing purposely to make your life miserable. They need your empathy and your skilled response to meet their needs, solve their problem, and help them feel better. They are dependent upon others to anticipate and meet their needs. When they feel good, their distress behaviors reduce. When you provide compassionate support, their anxiety should subside.

5 ways to make distress behavior better for all.

  1. Don’t take their distress behavior personally. Understand it is the disease talking and not the person. They are doing the best they can given the pathology and atrophy to their brain and the circumstance.
  2. Behavior influences behavior. If you escalate, they escalate. Conversely, if you remain calm and positive, you can have a positive impact on de-escalating their distress and restoring calm, safety, and security for all.
  3. Don’t ignore the early signs of distress behavior. Ignoring the early communications that something is wrong is like letting a spark burn in the dry brush.
  4. Don’t push through to complete a task. This is akin to throwing gasoline on a fire. You are inadvertently escalating a situation to a crisis. If I ignore the anxiety and keep pushing, they may feel threatened or controlled and strike. But if I can help them feel less anxious, they many never escalate and become agitated or aggressive. If we recognize and address the early signs of distress—anxious behaviors such as pacing, crying, or wringing their hands—we can prevent the escalation to a crisis situation.
  5. What we do (or don’t do) matters. When we observe signs of stress/distress, we want to STOP and evaluate what is happening. Consider what could be causing these feelings, then address it. If we address the trigger, we can prevent severe distress behaviors that put the person and others at risk for harm. And we can reduce the use of psychotropic medications, which is a very important goal, as these meds come with a black box warning label that says they may cause pre-mature death or harm when given to the elderly with dementia.

Addressing hallucinations and delusions.

I would be remiss if I didn’t touch on the fact that around 30% of people living with dementia may experience psychosis, which are hallucinations or delusions.

Hallucinations are related to seeing or hearing something that isn’t there. For example, those with dementia, especially Lewy body dementia, may see small animals or people that aren’t there.

Delusions are fixed, false beliefs, such as believing that their food was poisoned, or that they had a visit from deceased friends or relatives.

Both can be frightening for staff and families and for the person with dementia. But here are three tips for addressing hallucinations or delusions:

  1. If they come on suddenly, rule out medical causes such as infections, low oxygen, or dehydration first. They may be a result of the progression of dementia, but I’d highly suggest we investigate potential medical and treatable reasons first.
  2. Never argue or try to convince the person they are wrong. To calm the situation, it is best to enter their reality and then move them to someone or something meaningful, trying to successfully take their attention away from the delusion or hallucination. But if it does cause them distress or safety implications, work as a medical team to try to identify triggers. We can’t always find the trigger but on occasion we do. Take this example:

    A resident of an assisted living facility where I worked was having very disturbing hallucinations and delusions. She was convinced she heard men talking, gunshots, and that she was being robbed. After a few days of investigating, we determined this was happening to her almost exclusively at night. We soon found the source: a new resident had moved into the adjoining apartment and watched TV at night. The person with dementia was mistaking the TV for reality. When we kept the neighbor’s TV volume down, the hallucinations and delusions subsided.
  3. Attend to their emotional needs. If someone becomes bored, lonely, scared, anxious or depressed, the risk of hallucinations or delusions goes up. Helping to keep those with dementia in emotional well-being can have some protective effect.

Many people living with dementia will experience distress behaviors at some point throughout the dementia journey. Most of the time, the behavior can be prevented or reduced when we understand behaviors simply as a form of communication, and we successfully identify internal or external triggers of distress. Occasionally, we have little control, but don’t give up. Know all of the potential causes of stress for the person in care and put plans in place to prevent, and skillfully and compassionately respond when they occur.

Elders living with dementia don’t have to suffer from distress behaviors or be loaded up on psychotropic medications. Let’s use this nonpharmacological approach to enable every person with dementia to be free of chemical restraints and to live well with dementia.

Author Bio: Kim Warchol, OTR/L
President and Founder of Dementia Care Specialists at Crisis Prevention Institute