[4] Horizons: Distress Responses
- Team Writer
- 7 minutes ago
- 5 min read
Video Module 4 Transcript
What do we mean by distress? Distress in people living with Dementia can manifest as anger, yelling, swearing, hitting, agitation, pacing, and uncooperative behavior. Yet this distress is not universal. Not everyone living with Dementia will show these behaviors. Understanding these behaviors, sometimes termed challenging behaviors, is crucial to prevent or de-escalate.
Let's start with ourselves. Take a moment and think, have you ever sworn at someone? Have you ever, in a fit of anger, had physical contact with someone in your lifetime, or at least contemplated it? What might have been behind this behavior? Were you desperate, over-the-top, frustrated, or acting in self-defense? Perhaps you felt the person was not listening to you; you were feeling ignored. Maybe you felt your emotions were not believed or recognized, or worse, you felt under attack. In other words, you had an unmet need. I am hoping that you are seeing that these unmet needs occur even in people without cognitive impairment or Dementia.
Your advantage is that you can more clearly communicate your frustration and argue your point. People with Dementia often struggle with language, reasoning, and rational thinking. They communicate their frustration or unmet needs through their behaviors. Please repeat this mantra: all behavior has meaning. People living with Dementia who feel comfortable, respected, and safe do not moan, rock, yell, punch, and scream. It is critical not to blame the distressed behavior on the individual, as if they are in total control of their actions. Most often, they are not. Importantly, not all people living with Dementia exhibit these behaviors, but when distressed behaviors occur, step back, take a deep breath and consider what the person might be trying to communicate.
Distress Triggers
The triggers for these behaviors typically fall within one or more categories.
One: your approach or the way you communicate.
Two: physical discomfort.
Three: the environment.
Four: emotional discomfort.
Five: an underlying mental illness.
Your job is to be a detective. If possible, figure out the trigger and work toward eliminating or diminishing the trigger.
Trigger One: Your approach or the way you interact. Imagine that you are watching from above. Look and listen to how you come across. Do you look resentful, crabby, angry, or uninterested? If so, it is essential to shift your body language to appear kind, safe, friendly and loving. Avoid arguing or trying to rationalize. Use words and a tone of voice that is encouraging and positive. Then pay attention, if the yelling and lack of cooperation fade away.
Trigger Two: physical distress. The brain diseases and disorders that may result in developing Dementia do not generally cause pain. People often receive their Dementia diagnosis while having had preexisting painful conditions such as arthritis, lower back troubles, poor oral health, pressure sores, and discomfort from prolonged sitting. The challenge is that people living with Dementia feel pain similar to others but may have difficulty expressing it. The next step is to determine or call on healthcare providers to help reduce or better manage the pain. Other triggers for physical distress include hunger, fatigue, dehydration, a full bladder, loose bowels, constipation, and infection. Your role is to review this list and find ways to correct them.
Trigger Three: environmental factors. People with Dementia also react negatively to loud noises from sources such as the TV and radio, clutter in the room, and too hot or too cold temperatures. If you identify one of these culprits, lower or turn off the TV, declutter the space, and adjust the temperature or clothing items.
Trigger Four: emotional triggers. Sometimes a memory may arise, or a person will be reminded of a sad or traumatic event. These may include the death of a spouse, an assault or domestic abuse, or even living through war, famine, or dislocation of one's family. In these situations, you must take special care to create a sense of safety through your words and actions. Start by acknowledging their sadness or fear: "I'm so sorry you feel this way. You are safe with me." There are times like these when you cannot fix it. Acknowledging the underlying emotion and sitting quietly and supportively near their side can be the most soothing.
Trigger Five: mental illness. Some people develop Dementia along with a previous history of mental illness, such as depression, schizophrenia, or bipolar disease, but Dementia itself is not considered a mental illness. The underlying mental illness must be managed regularly and consistently; otherwise spikes in anxiety, depression and agitation may occur. It will require the assistance of a mental health specialist to monitor and adjust medications along the way.
How to De-Escalate
Sometimes, even with your best attempts, a person living with Dementia can become highly distressed. A way to help calm people down is to remember the acronym ACE. This stands for Acknowledging the feeling and their reality, staying Calm, and Empathizing and engaging appropriately.
Acknowledge the feeling: "I can see that you are angry. I'm so sorry. I hope it won't happen again."
Remain calm. Use a soothing tone of voice. Stay nearby and give them personal space. Do not hover over, or look threatening. You may need to leave the room for a few minutes, or stop what you are doing. Breathe slowly.
Empathize and engage. After a while, see if you can distract by offering a favorite snack, changing the subject, or talking about something pleasant.
If the person becomes a danger to you or themselves, leave the immediate vicinity. Call 911 and inform the police that this is a person with a history of Dementia, and that they send an officer who is good at de-escalation skills. Often, people living with Dementia will calm down if they see an officer in uniform. Stay available to answer questions from law enforcement. Under all circumstances, should law enforcement intervene, work with them to ensure that your care partner is not arrested or hauled off to jail without exhaustive attempts to rectify the situation. Often they need hospitalization rather than incarceration. There's no shortage of possible tragic outcomes when someone living with Dementia is put into police custody.
After any episode of distress, reflect on triggers and solutions. Share experiences with others and seek their support. Caregiving for individuals with Dementia means practicing patience and bringing a proactive approach to preventing distress. Remember, you are human too, and learning to navigate this information requires you to take good care of yourself over the long haul.
Lastly, please consider these suggested next steps.
One, keep a log of potential triggers for distress and identify preventive measures.
When possible, share this information with others to prevent further distress, and request one or more Aware and Share cards from the Dementia Society of America® to hand out. They are wallet-sized cards with tips and guidelines to help avoid misunderstandings, and to lower anxiety when communicating with someone living with Dementia.
Three, contact the local police or sheriff's department and see if they can enter a note into the 911 system that a person living with Dementia resides at a particular address, advising that any call from the property or the neighbors that involves your loved one should be approached with added caution and understanding. You may have to fill out a form or meet with an officer to verify the information, but it can be well worth the extra effort.
Thank you for your love and devotion to your care partner. It was my honor to join you today. Thank you so very much.