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 former President Obama—this is a new article about the weather back east.”
Caregiver, Orange, MA
While memory problems are the most characteristic symptom of Alzheimer’s disease, most individuals with dementia also experience progressive problems with communication. The deterioration of a person’s ability to communicate contributes substantially to the stress and burden of caregivers and is often classified among the most serious stressors that caregivers face.
Communication changes are related to the area of the brain affected by the disease. One of the first symptoms of Alzheimer’s is loss of short-term memory. This means a person does not remember the “what, where, and when” of recent events—what they ate for breakfast, where they went yesterday, and when their daughter is returning home. Alzheimer’s also affects emotional control relatively early in the disease process, which can affect communication.
In frontotemporal dementia, because damage begins in the front part of the brain, memory is less affected, at least at first. But the front part of the brain controls judgment, moral reasoning, logical thinking, and social behavior. A person with frontotemporal dementia, because they are gradually losing some of their social control, might make inappropriate sexual comments, make socially inappropriate remarks, and be frustrated when trying to make decisions.
In vascular dementia, because damage can be widespread and not necessarily associated with a specific part of the brain, communication problems are usually less specific. There may be a slowness of thought, problems with attention and concentration, and difficulties with language. Complex, fast-paced conversations or quick changes in topic may become difficult (this is true for all types of dementia).
A person with Lewy Body dementia can experience paranoia, delusions, and hallucinations (usually visual), which are very real for the person experiencing them. Arguing, explaining, agreeing, or validating the paranoia or delusion is usually not an effective way to communicate with a person with this type of dementia. Emotional support, quiet touch, and redirection may be more effective than verbal communication.
Improving Verbal Communication
Think about the last conversation you had with a 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 had no trouble talking even with noise in the background.
A person with dementia has trouble with these communication skills. They have to work hard to say what they want to say. They might not remember what was said a few moments ago. They have trouble talking and doing something else at the same time. Background noise is confusing and irritating.
Verbal communication is communication with words. It is an important part of daily life. Verbal communication creates positive relationships and lets us know that someone cares. It allows us to express our feelings and gives the caregiver an opportunity to assess the well-being of the person they are caring for.
A successful conversation with a resident who has dementia begins with eye contact* and an introduction. You can put a person at ease by starting with something light and conversational such as the weather or what’s happening in the news. Nonverbal gestures such as head nods, a light touch on the arm, and a warm expression create trust.
*Keep in mind that some cultures view eye contact as aggressive or rude. Also, some patients may not make eye contact with you as a sign of respect for authority.
No matter how severe the dementia, effective communication is very important. Practice these habits, even when you are busy or in a hurry:
- Approach from the front, slowly. Avoid standing to the front or crowding the person, which may appear threatening.
- Move to the side and crouch down.
- Take a deep breath and relax.
- Greet the person by name, then introduce yourself.
- Use short, 1- or 2-part questions and wait for a reply.
- Use a calm voice, be attentive and sympathetic.
- Continue the conversation by asking a followup question.
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. You can begin a general conversation by asking for an opinion or giving an opinion. You can make a suggestion or ask for an explanation.
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? Where did they work? Where did they travel? What were their interests and hobbies?
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.
A general conversation can be about yourself, about your workday, your commute, or your family. It can include positive comments about other people you work with or other residents. If someone else is in the room, include that person in the conversation.
People with dementia—especially moderate or severe 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
When you want to complete a specific task, use what is called a closed question. This shows interest and invites a person to respond. Say, for example, “Are you hungry?” or “Are you ready to get dressed?” Closed questions limit the conversation and keep the conversation focused on the task at hand.
Talk slowly and don’t argue. Use gentle persuasion and be positive when giving directions. Share your goals with the resident. Be respectful and relaxed. Keep in mind that the person you are caring for may not share your goal. Or 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. He is a resident in a nursing home. 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 nursing aide, 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 dining room.” 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 really busy!” 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 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—when 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 really busy. Two nursing aides called in sick so she was assigned six additional patients. She was way behind and needed to get George to the dining room 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, 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, squatting next to him, 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.
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 verbal conversation.
How you dress, your posture, how you approach a person with dementia, and how close you stand to a person are also examples of nonverbal communication. Even silence is a form of nonverbal communication.
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 can reveal calmness or impatience, affection or disapproval, confidence or fear. When you are talking, the loudness of your voice and its tone and rhythm are communicating 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 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. Some studies have shown that people say they don’t like people when they see them in unattractive rooms.
Communicating When a Person Is Nonresponsive
People in late-stage 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.
Communicating with a person who is unresponsive can be a challenge for family and caregivers. It’s 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 the person 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, and 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 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.
No matter how unresponsive a resident is, practice these habits:
- Approach 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 touch to communicate your intentions.
- Avoid a condescending tone.
Communicating with a Person in Hospice Care
The purpose of hospice is to ease a person’s pain and reduce suffering at the end of life. However, if a person can no longer communicate due to dementia, assessing their needs can be difficult.
Although you will use many of the same communications techniques you have already learned, a person in hospice who has dementia will probably be more challenging. Non-verbal communication skills are critical—especially if the person’s dementia is severe. This means you must develop good non-verbal communication skills but must also be able to understand and interpret your client’s non-verbal cues. All the things we take for granted and all the things we do to keep ourselves comfortable now depend on the skill and compassion of caregivers.
Pain management is an important daily consideration and involves much more than medications. All sorts of things can cause pain: heat, cold, staying in one position for too long, lack of support in bed or in a chair, constipation, pressure on skin, lack of movement, and old injuries.
People with dementia can be experiencing just as much pain at the end of life as someone with cancer. Because pain is so difficult to assess in non-communicative patients, they often receive less pain medication than they need.
To complicate things, some people with dementia may refuse to take medications. Some may have problems swallowing a pill. Symptoms can change from day-to-day and a treatment that worked one day may not work the next day.
Because it is so hard to decide objectively how much pain medication is needed, care providers must rely on their ability to read non-verbal cues such as facial expressions, withdrawal, breathing patterns, and even anger and aggressiveness. Family members can be a big help in interpreting when their loved one is in pain although they often lack information and training, and fear making a wrong decision.
In a study of caregivers who were caring for a person with dementia who was also on hospice, researchers found that caregivers:
- Had difficulty communicating with patients
- Experienced a lack of consistent guidance from healthcare professionals
- Were uncertain about the cause and source of patients’ pain
- Experienced a great deal of secondary suffering (Tarter et al., 2016)