My mom gets pretty confused—especially in the early morning and late evening. She struggles for words—often trying to explain something by saying “you know, that thing” and then gets frustrated because I don’t understand. When I read the newspaper to her, all the articles get jumbled up in her head and she doesn’t know when one article ends and another starts. So I just read short articles, Miss Manners, that sort of thing. I tell her “that’s the end of the article about the election—this is a new article about the weather back east.”
Caregiver, West Palm Beach, Florida
How Dementia Affects Communication
Think about the last conversation you had a with friend or family member. You said what you wanted to say. You remembered what was said and understood the conversation. You probably had the conversation while doing something else—fixing breakfast or getting ready for work. You have no trouble talking even if there was a lot of noise in the background.
People with dementia have difficulty initiating and understanding communication. They have to work hard to say what they want to say. Depending on the severity of the dementia, they might not remember what was said a few moments ago. They will often have trouble carrying on a conversation and doing something else at the same time. Background noise is often confusing and irritating.
My mom has dementia but still listens intently to our conversations. She followed the 2016 election with a great deal of interest even though when asked, she couldn’t remember the names of the presidential candidates. When we said to her “are you are Democrat or a Republican” she responds immediately and fiercely “I’m a Democrat!”
Family Caregiver, Pensacola, Florida
General conversations are friendly and informal. They are not usually related to a specific task or goal. General conversations are social, a way to greet people and find out how they are doing. General conversations usually begin with a greeting or a comment, suggestion or explanation.
A general conversation can be about yourself, your hobbies, your workday, your commute, or your family. It can include positive comments about other people you work with or other residents. General conversations can include other people who are close by.
A general conversation with a person with dementia is no different than a conversation you would have with a friend or coworker. You can connect with people by learning about what they liked when they were younger. What music was popular? Who was president? What major events happened in their younger years? Did they serve in the military? How many children do they have? Where did they work? Where did they travel? What were their interests and hobbies?
A person with dementia may not remember what you talked about yesterday, but they still want to hear what you have to say, even if you are repeating something said earlier.
Conversations Related to a Task or Goal
Dementia affects goal-directed conversations just as much as it affects general conversations, maybe more. However, when trying to complete a specific task, communication must be more direct. Conversations about a specific task are more successful when “closed questions” are used. A closed question shows interest and invites a person to respond. For example, “Are you hungry?” or “Are you ready to get dressed?” limits the scope of the conversation and keeps the person with dementia focused on the task at hand.
Task-related conversations involve gentle persuasion and positive feedback. Speak in a slow, clear voice, be respectful and relaxed, and explain the goal of the task at hand. The person you are caring for may not share your goal or agree with what you are asking. Or, more likely, they may not understand what you want. The following story featuring George and Ann illustrates this point. Think about what you would do in this situation.
George in the Morning
George has moderate dementia and lives at home in Sarasota with his daughter and an agency caregiver. He can still get up and dress himself without help. This morning George got dressed and is resting in a chair next to his bed. Ann, a new caregiver, enters his room and calls out to him, “Come on George. Are you hungry? Did you sleep well? Time for breakfast! Stand up. Let’s get you to the kitchen for breakfast.” George doesn’t move, so Ann tries again, “Come on, George, get up! You don’t want your breakfast to get cold, do you? I don’t think so. Come on George, I’m kind of busy! I have to do the laundry and make your bed.” Ann takes his arm and helps him stand up. George pulls away and sits back in his chair.
What Is George Thinking?
George is comfortable, warm, and a little sleepy. He’s not sure what time of day it is. He isn’t hungry. A young woman he doesn’t know has barged into his room and is saying something to him in a loud voice. He is trying to figure out what she is saying–and then she says something else. Her voice is loud and he grimaces a little. He is not sure what she wants. She grabs his arm and he supposes he should go with her but she is being too pushy and this makes him mad. So he pulls away and sits back in his chair. He turns his head and tries to ignore her, hoping she will go away.
What Is Ann Thinking?
Ann is a new caregiver and needs to get George up and fed before his daughter gets back from shopping. The regular home health aide called in sick and Ann is covering for her today. She wants to get George to the kitchen for breakfast. When she enters his room she is relieved to see that George is already dressed and up in a chair. She tells him it’s time for breakfast, takes his arm, and tries to help him stand up. George seems confused and he pulls away. Ann repeats what she had just said, only more loudly. She reaches for him again but he turns away, crosses his arms, and refuses to budge.
What Could Ann Have Done?
Ann should enter George’s room quietly and respectfully after knocking on the door to get George’s attention. She should ask “May I come in?” and wait for George’s reply. Approaching George more slowly to his right side, squatting beside him, offering her upturned hand, and introducing herself gives George a chance to understand who she is. A pause at the end of each sentence gives George time to respond. “Hi, George.” Pause. “How are you?” Pause. “It’s 9 a.m.” Pause. “Time for breakfast.” Pause. If George doesn’t respond, Ann can repeat what she just said in a calm voice or ask another short, closed question: “George, are you hungry?” Pause. Now George only has one simple statement to think about and he is more likely to understand and respond. Ann must remember that George doesn’t have to do what she asks. It’s okay for George to have his breakfast in his room or even skip breakfast and eat when he is hungry.
Strategies and Guidelines for Verbal and Nonverbal Communication
When communicating with a person with dementia, there are several things to keep in mind. What is the level of the person’s dementia? Is there a hearing loss? Are there underlying conditions that affect mobility or cause pain? Are you having a social conversation or do you have a specific goal in mind?
Improving Verbal Communication
Verbal communication is communication with words. It is an important part of daily life, creates positive relationships, and lets us know that someone cares. It allows us to express our feelings and gives caregivers an opportunity to assess the well-being of the person they are caring for.
A successful conversation with a person who has dementia begins with eye contact and an introduction. Starting with something light and conversational, such as the weather or what’s happening in the news, will put the person at ease. Nonverbal gestures such as head nods, a light, appropriate touch* on the arm, and a warm expression create trust.
*Appropriate touch refers to professional and ethical behavior while considering the individual’s religious, cultural, and personal preferences.
When communicating with a person with dementia, practice these habits:
- Approach from the front, then kneel down to the person’s right side
- Take a deep breath, relax, and take a moment to look at the person
- Offer your upturned hand
- Greet the person using their name, then introduce yourself
- Check your body language—if you remain standing, you may appear aggressive or threatening
- Use short, 1- or 2-step questions and await a reply
- Be attentive and sympathetic
- Continue the conversation by asking a follow-up question
Improving Nonverbal Communication
Nonverbal communication is communication without words. Facial expressions, eye movements, hand gestures, body language, and movements of the arms and legs are examples of nonverbal communication. Tone of voice and how well you listen and pay attention are nonverbal skills that matter just as much as words.
How you dress, your posture, how you approach a person with dementia, and how close you get to a person are also examples of nonverbal communication. Even silence is a form of nonverbal communication.
Appropriate touch is a powerful form of nonverbal communication. Touch can be friendly, frightening, soothing, dominant, or supportive. Touch has different meanings depending upon your culture, gender, age, and situation.
The way you speak carries nonverbal information. Your tone reveals calmness or impatience, affection or disapproval, confidence or fear. The loudness of your voice and its tone and rhythm communicate additional information. If you are hurried, frustrated, or angry, a person will pick up on your mood and body language more quickly than your verbal communication.
How the environment looks is a powerful form of nonverbal communication. A clean, nicely decorated room with good lighting is supportive. It encourages people to interact. A drab room with harsh lighting and little decoration has the opposite effect—it shows a lack of support and respect. Studies have shown that participants say they don’t like people when they see them in unattractive rooms.
Nonverbal communication using hand gestures and unhurried movement reinforces your words. If the person does not answer right away, be patient and wait a bit. It’s okay to be silent, which is calming and reassuring—especially in social conversations.
Communicating When a Person Is Not Responsive
People in the late stage of dementia may become unresponsive. This means they do not respond to what is happening around them. It means that they can no longer communicate their wishes. It does not mean they don’t feel or understand, at least on some level, what is happening around them.
Communicating with a person who is unresponsive can be a challenge for family members and caregivers. It is difficult to know what the person is thinking or feeling. Fortunately, many of the techniques that work in the earlier stages of dementia are useful in this stage as well.
Assume that people can hear and possibly understand even if they don’t respond. Use gestures and facial expressions to support what you’re trying to say. Give the person time to understand why you are there. Use a calm, slow manner and a respectful attitude.
You can communicate concern and caring by using pillows for neck, arm, and leg support, a warm blanket, and gentle repositioning. Mild range-of-motion exercises, gentle, appropriate touching, and massage are reassuring.
Keep the environment peaceful and avoid loud or sudden noises; the person has no way to tell you when a sound is annoying. Reduce discomfort and confusion by keeping the area around the bed or chair free of clutter.
When working with a person who is unresponsive, practice these habits:
- Approach on the person’s right side in a calm and relaxed manner
- Slow your own movements
- Re-introduce yourself at each encounter
- Address the person by a preferred name or title
- Use short, simple sentences
- Use hand gestures and light, appropriate touch to communicate your intentions
- Avoid a condescending tone
Detecting and Assessing Pain
It is important to recognize when a person who is has impaired communication is experiencing pain. There is good agreement in both large and small studies that about 50% of the people with dementia regularly experience pain (van Kooten et al., 2015).
Healthcare providers and caregivers are often uncertain about identifying and assessing pain in clients with dementia, especially if the client is unable to communicate when they are in pain. Clients, especially those with advanced dementia will not be able to respond to pain scales, so careful observation and proxy reports will be needed in up to about half of clients. Many clients (>50%) with advanced dementia experience pain in the last week of life that is not satisfactorily managed (Volicer and van der Steen, 2014).
Both physiologic and behavioral responses can indicate the presence of pain. Physiologic responses include tachycardia, increased respiratory rate, and hypertension. Behavioral responses include splinting, grimacing, moaning or grunting, distorted posture, and reluctance to move. A lack of physiologic responses or an absence of behaviors indicating pain does not mean there is an absence of pain.
Observational pain assessment tools have been published by the American Geriatrics Society, which describes six domains for pain assessment in older adults:
- Facial expression
- Negative vocalization
- Body language
- Changes in activity patterns
- Changes in interpersonal interactions
- Mental status changes (Lichtner et al., 2014)
For non-communicative patients, the Pain Assessment in Advanced Dementia (PAINAD) is a commonly used observational scale. This tool, developed by a team of clinicians at the E.N. Rogers Memorial VA Hospital in Bedford, Massachusetts, assesses breathing, negative vocalization, facial expression, body language, and consolability.
Pain Assessment in Advanced Dementia (PAINAD)
Smiling or inexpressive
No need to console
Distracted or reassured by voice or touch
Unable to console,
distract, or reassure
PAINAD Scoring: 1-3 = Mild; 4-6 = Moderate; 7-10 = Severe