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Understanding Behaviors as a Form of Communication
in Individuals With Dementia
By Molly Fogel, LCSW

Communication is key. We often hear this expression, but nowhere is it as impactful as in caring for an individual with dementia. Both the individual living with the illness and we, the care partners, can benefit from learning new communication techniques and strategies. Dementia, including Alzheimer's disease, takes away not just memories, but in many cases, the way an individual communicates. It is important for care professionals to understand the illness, the difference between dementia and normal aging, and how it impacts the way in which individuals with the disease engage with their environment.

When certain behaviors, such as agitation, are exacerbated, care partners can become frustrated. The mind often assumes someone is "just being difficult," when, in fact, the individual may be unable to express what he or she is trying to say, which can be upsetting. When training other social workers in dementia-specific care, I often ask them to imagine what it would be like to unable to express themselves as they had been doing for 30, 40, or 50 years. This is what happens when the ability to fully express oneself verbally is taken by dementia.

As we age, changes occur throughout our bodies, including in the brain. Some of these changes can result in memory concerns—minor forgetfulness, such as misplacing one's keys. Changes that impair daily functioning may indicate a condition called mild cognitive impairment, an intermediate stage between normal aging and the more serious decline found with dementia. It presents as a slight but noticeable decline in memory and thinking ability.

Dementia is term to describe a group of symptoms including loss of memory, impaired judgment, language challenges, and difficulty with complex motor skills, which results from damage to or death of the brain's neurons. Alzheimer's is one of several diseases that can cause dementia. Each person's presentation of dementia can vary, depending on the type of dementia and location of the damaged neurons.

Currently, more than 5 million Americans are living with Alzheimer's disease, and that figure is expected to nearly triple by the midcentury as the number of older Americans continues to rise. Symptoms of Alzheimer's disease include loss of memory, thinking, and language skills, as well as behavioral changes.

In examining how communication and engagement is impacted by Alzheimer's disease, it is important to take a look at the "four As" often associated with Alzheimer's disease:

• amnesia impacts ability to retain memories;
• apraxia causes difficulty with movement;
• agnosia refers to an inability to interpret data from the five senses; and
• aphasia challenges both speaking and understanding language.

Personality changes—including some psychiatric symptoms such as delusions, hallucinations, and depression—will also occur as Alzheimer's disease progresses, and these can precipitate a variety of different behaviors.

With all of these factors at play, one can see how communication can become increasingly impaired as Alzheimer's disease progresses. This is one reason why dementia-specific training is so critical to providing the best possible care. It is important to recognize these changes and their impact on behavior and functioning, and to assess how we, as care partners, can engage with individuals in our care and truly understand and meet their needs.

As we learn in the first few days of social work school, building a relationship is the core to a majority of the work we will do in our careers, and sets the stage for the success of the interaction. Building a relationship involves exploring a person's identity and knowing each individual in our care in his or her own unique context. What this looks like in best practice for dementia is the recognition that this is not just Mr. Smith, the new resident in the facility, but Mr. Smith, the former accountant and huge football fan with three children and five grandchildren. It is important that we understand the whole person. Mr. Smith is an individual with a rich history that we, as care partners, want to know about and will take steps to learn. By doing this, we can help better identify changes, patterns, and themes in Mr. Smith's communication and behaviors.

Ultimately, in relationship-building and partnering in care, we are nothing without our therapeutic alliance and our ability to utilize empathy—truly putting ourselves in the other person's shoes—to gain an understanding of how they may be feeling and to create a space where a person feels trusted and safe.

So, how can we best help the people with whom we work recognize and understand the challenges that arise and find solutions to help that person live in a more meaningful way? First, we must acknowledge the individual as the expert; he or she knows him- or herself better than anyone does.

Once we've learned more about the illness and the individual, we can then turn our focus to communication—how to best communicate with individuals living with dementia, understanding their needs, and mitigating behaviors that can be misunderstood as problematic.

Nonverbal Communication

It's no secret that 80% to 90% of our communication is nonverbal. Body language and tone speak louder than our words ever could. So think, if we could no longer use our words, how we express ourselves through body and tone would be the main mode of communicating. When language is impacted, as it is with dementia, as care partners, we need to be curious and get a sense as to what the individual with dementia is trying to communicate. It is also important to identify exactly what we are communicating to others nonverbally. Often we emphasize the talking aspect of communication, and in doing so exclude other elements of communication. When we only focus on talking we run the risk of being reactive (i.e., knee-jerk response) instead of responsive (i.e., thoughtful) in our communication.

When communicating in dementia care, it is important be mindful of the following:
• Tone of voice. Remain cool, calm and collected.
• Voice volume. We don't need to yell to be heard, and we don't need to match someone else's aggression. Speak calmly and at a volume that allows us to be heard, but not that escalates the other person's behavior.
• Facial expression. Calm, neutral, and open facial expressions are best. Know what your face does when you are talking.
• Body positioning. Meet the person at his or her level. With dementia, depth perception and spatial awareness can be impacted. The person may not see you if you come from the side or back.
• Check yourself. Check in with your own stress. If you are stressed, it will show.

Without words, how can you communicate with an individual living with dementia? As a care partner, you should remain engaged with the person, carrying on conversations and seeking engagement through a smile or nodding. A great deal can be communicated through touch. Extending a hand for a handshake can give a person the opportunity to choose whether to connect with you through touch; this can be especially helpful if the person does not know who you are and what you are there to do. Gentle touch can calm a person who is beginning to feel anxious or distressed. For those with little or no verbal ability, this can be a way to connect with another person (e.g., rubbing their back, massaging their feet, and holding their hands, which are valuable suggestions for communication with their family members). Be mindful in your use of touch and sensitive to whether the person enjoys touch, or if it ends up triggering other symptoms such as pain or anxiety.

It is important to keep in mind that when an individual with Alzheimer's cannot express concepts verbally, he or she will do so through actions. As care partners, we need to notice signs of distress and figure out the source. Understanding the where and why will direct you to solutions.

For example, if I'm frustrated with something—like I know what I am trying to say, and the words aren't coming out right—I might have more of an edge to my speech, or I might push you away. I'm not trying to be difficult; I'm just expressing my frustration. Similarly, if a person is in pain and can't express it, he or she may present with more agitation than usual each time a care professional comes in to check his vital signs. He or she is not trying to be difficult, but for someone who is not tuned in to the individual reactions it may be perceived as just that.

To best work through behaviors as communication, care partners should be socially perceptive—noticing reactions and understanding what is really going on. Be able to bend. In this work, we need to adapt, to "ride that wave" and go with it. Each day can be a different experience with each of the individuals in our care, and there is little we can do to change that other than to go with it. It can be so easy, in the fast-paced environments in which we work, to fly through the day on autopilot. Instead, slow down for a moment, take a look at what is going on, think outside your normal box, and find solutions that way. Most importantly, know yourself and be curious. Know your triggers, your strengths, challenges, and what you are working with today.

So what now? Use those good social work skills, build relationships, and gain insight into what is at the root of the behavior and what is being communicated. Stay calm, be patient, try to understand what is going on, make an assessment, ask the person what is wrong, listen to the response, and make changes as needed. Recognize his or her concern, feelings, or struggle, whatever it may be, and validate as best you can. Assist in maintaining or help to regain a safe space—express comfort and reassure that you are there to assist, to partner in care, to help meet the individual's needs and ensure a life that is meaningful. Redirecting can also be useful when a person may be in distress, such as asking for a partner who passed some time ago. Ask the individual to tell you about the relationship—where did the spouse work, what activities did they like to do together? Then, redirect their attention to an activity or something that could further relieve their distress.

It is important to recognize where these behaviors are coming from and what the person is actually trying to communicate. Don't forget to use your team—to share what you learn with them and to ensure consistency in interventions with each individual.
For more information about dementia-specific training for social workers, visit www.careprofessionals.org.

— Molly Fogel, LCSW, is director of educational and social services at the Alzheimer's Foundation of America.