Dementia changes the way an individual can communicate their wants, needs, thoughts, and emotions. Typically, communication changes from verbal to more nonverbal, such as body language, facial expressions, and behavioral expressions.
Individuals with dementia often exhibit at least one challenging behavioral expression during their illness from agitation to wandering, delusions to hallucinations, verbal and/or physical aggression, depression to disinhibition. In all, there are over 36 different expressions, and this can be challenging for both the person with dementia and their caregiver.
Dementia is a very individualistic disease. Your loved one may experience one or more of these expressions, but you should not expect your loved one to experience all of them. Approximately 65 percent of challenging expressions happen during personal care when they receive assistance with bathing, toileting or dressing.
Understanding what is happening to the brain and possible causes for the challenging expressions can help caregivers respond appropriately and keep an expression from escalating.
Dealing with challenging expressions is just one of the many free education sessions the James L. West Center for Dementia Care’s education team offers to support dementia care partners.
Possible causes for unwanted expressions
As the disease progresses, the brain undergoes physical and chemical changes that inhibit communication and understanding and cause a variety of symptoms.
A person with dementia may not be able to understand what is being said or how to follow through with instructions or requests. They may be overstimulated by noise or other commotion, and easily startled by loud noises. It’s difficult for the person to express their confusion and needs, leading to frustration.
Another cause for challenging expressions is misinterpreting a situation. For example, a caregiver may be smiling and encouraging while assisting with a shower, but the person with dementia may misunderstand the actions as sexual advances.
Several other reasons and risk factors contribute to possible challenging expressions.
- Being in a new environment or changes in the environment
- Undiagnosed pain
- Desire to meet former obligations like a job or to go home
- Physical problems or medication side effects
- Boredom or loneliness
- A negative approach from a caregiver
- Sundowning
- The task is too complex
- Being treated like a child or feeling useless or without purpose
It takes time for a person with dementia to adjust to a change in environment. It can take anywhere from 72 hours to 30 days or longer for someone with dementia to adjust to a new room or place. The further along they are in the disease process, the longer the adjustment period will be, and challenging expressions during this time should be seen as a form of communication from the individual telling us they are confused, unsure, or nervous. They are doing the best they can.
“Pain and discomfort can be major causes of negative expressions in persons with dementia,” said Jaime Cobb Tinsley, vice president of dementia and caregiver education for James L. West.
Caregivers should be alert to signs their loved one is in pain:
- Verbal cues like moaning or crying
- Rubbing or protecting that part of the boy
- Trouble sleeping
- Stiffened upper or lower body that is held rigidly or moving slower
- Decreased activity level
- Increased agitation, aggressive behavior, pacing or rocking
- Mental status changes
- Becoming aggressive for the first time
These signs can point toward a medical issue for your loved one with dementia.
Changes through the stages of dementia
Each stage of dementia poses different challenges.
Most often, in the early stages of the disease, your loved one may not recognize the cognitive and functional changes in themselves. This can be challenging for care partners because the person with dementia is resistant to accepting help because they don’t see a need for it.
The lack of self-awareness can lead to denial of a problem and deflecting the issues onto the care partner. They may experience depression and grief over a loss of independence and self.
The challenge for the care partner is to keep things as normal as possible. Develop and maintain structure. Simplify the environment by eliminating clutter and making changes for safety concerns, such as overseeing medications and storing them in safe places, setting up password protection apps, and signing up for the Medic Alert® and Alzheimer’s Association® Safe Return Program.
Positive reinforcement throughout the day and responding rather than reacting can prevent frustration from triggering unwanted expressions.
As the disease progresses and their abilities change, the person living with dementia may exhibit new expressions such as wandering, arguing, sleep disturbances, agitation and fighting back, and difficulty finding the right words.
These difficult expressions will start to occur or occur more frequently. When their communication and language skills decline, the person living with dementia finds other ways to interact.
“A consistent routine with equal stimulation and rest may reduce the occurrence and severity of difficult or challenging expressions,” Tinsley said. “A familiar routine can provide feelings of security and normalcy that can help both the care partner and care receiver do better for a longer period of time.”
Persons with dementia have the right to say no to doing things. How we respond to their reactions can make or break the interaction. A care partner may have to take a break and return to an important care task.
Breaking tasks into smaller steps and providing verbal and visual reminders can help prevent difficult expressions.
Be reassuring and offer simple answers. Let go of the little things. Does it matter if your loved one’s shirt is tucked in? It may be more important to make sure their teeth are brushed.
This is an excellent time to seek home and community-based services to give yourself a break.
As your loved one enters the late stages of dementia, you and they will experience a lot more changes. Communication will be primarily non-verbal in this stage, so it’s essential to be in tune with what they tell us through their expressions and how they interact with others and the environment.
Distractions and gentle touch are other techniques that can help prevent challenging expressions by communicating safety, compassion and understanding.
When considering how to respond, look at the emotion behind their actions. Refocus and make a connection with your loved one.
The ABCs of decoding expressions
The A-B-C method helps identify triggers that may upset your loved one. The ABC method stands for antecedent-behavior-consequence.
If you know a trigger, you can avoid it in the future to prevent the behavioral expression. As the disease progresses and changes, so will your loved one’s expressions and what triggers them.
Questions to ask to help decode difficult expressions are:
1. What happens just before your loved one exhibits a challenging expression? Look at what happened right before it, during the day or all week.
2. Where does it happen? What is happening around your loved one when they have the challenging expression?
3. When does it happen? Is it a particular time of day? Who was involved? What makes it worse? Why?
James L. West offers a 6-item checklist to help further identify triggers.
1. Who are they as a person? This includes preferences and pet peeves, life patterns, history and personality. Try to see the situation from their point of view.
2. Level of dementia. Are they in the early, middle or late stages? What’s their level of confusion and ability to understand the situation? Do they have sensory awareness?
3. How are they feeling? Do they have health issues that could be contributing? Are they tired?
4. What are you communicating? What is your approach? Are you validating their feelings or challenging them? Are you exhausted, frustrated or angry?
5. Environment. What are the noise and light levels? How does it look or feel? What is going on around you?
6. Time/Patterns/Routines. Does this fit in with the day? Has anything changed in the usual routine?
Often, we can identify what’s going on when we take a step back and really look at the situation from their perspective.
Managing and Preventing Challenging Expressions
There are several things we can do to manage and prevent challenging expressions.
First, avoid the word “remember.” Our loved one would remember if they could. Prompting them to remember can frustrate them because they aren’t able to recall something you think is important.
Second, use the word “OK” to acknowledge that they spoke, and we heard them. When we say “OK,” we validate what our loved one is feeling and what is happening to them.
Next, fix the situation with a therapeutic story. As the care partner, it is our job to fix the problem without getting emotional. For example, if you are being accused of stealing all their money, then “call the bank” and have your name taken off the account.
Distractions are another great tactic. One of the best distractions is food; the sweeter, the better. Music is another powerful tool, especially music from their past. Children and animals are also good distractions. You can find lots of fun and engaging videos on YouTube featuring cute children and animals to take their mind off the current situation.
As a caregiver, there are many tools available to help manage challenging expressions. Taking the time to understand the emotions behind the expressions and viewing the situation from your loved one’s perspective can reframe the situation and help you avoid future incidents.
The James L. West Center offers regular classes on dementia caregiving for care partners at no cost. The James L. West training library contains more about dealing with specific challenging expressions. The James L. West Education Calendar lists upcoming in-person and virtual sessions.
