My mom struggles for words—she tries to explain something by saying “you know—that thing” and then gets frustrated when I don’t understand. When I read the newspaper to her, 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 on the east coast.”
Caregiver, Pensacola, Florida, 2020
How Dementia Affects Communication
Think about the last conversation you had with a friend or family member. You said what you wanted to say. You understood the conversation and remember what was said. You probably had the conversation while doing something else—fixing breakfast or getting ready for work. You had no trouble understanding the conversation even if there was a lot of noise in the background.
When communicating with a person who has dementia, there are several things to keep in mind. What is the level of the person’s dementia? Is there a hearing loss? What is the setting? Are you having a general, social conversation or do you have a specific goal or task in mind?
A person with dementia has to work harder than you do to say what they want to say. They might not remember what was said a few moments ago and they have trouble talking and doing something else at the same time. Background noise can be confusing and irritating.
The 1st person with dementia I ever worked with was an older man who was also hard of hearing. We were doing some exercises that I hoped would improve his balance. I introduced myself, saying, “Hi, my name is Lauren”. He responded with a smile, saying “Hi moron.” I was shocked at his rudeness and didn’t like being called a moron. He also didn’t seem to understand that he had insulted me. It happened again with another person and I finally realized that “L” is a difficult letter to hear and my 1st client was trying his best to fill in a gap in his understanding. My sister (an ER nurse) thought it was hilarious.
Physical Therapy Aide, Ft. Lauderdale, 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. You can begin a general conversation by offering a greeting and asking for an opinion or giving an opinion. You can make a suggestion or ask for an explanation.
A general conversation can be about yourself, about your workday, your hobbies, or your family. It can include positive comments about people you work with or other family members or caregivers. If there is another person nearby you can include that person in the conversation.
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?
People with dementia—especially moderate or severe dementia—may have difficulty with general conversations. They have difficulty understanding complex questions or statements. For example, instead of stringing together several thoughts or statements it is better to break down your greetings, statements, or questions into short, simple sentences. Listen carefully and use your judgment to determine if the person understood you. Although they may not remember what you talked about yesterday 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. When you want to complete a specific task, use what is called a “closed question.” This shows interest and invites a person to respond. Ask, 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 agree with what you are asking. Or they may not understand what you want. It is very common for caregivers to mistake a response for understanding. At times, we all fake our understanding of a conversation—even those of us without dementia. The following story featuring Randy and Ann illustrates this point. Think about what you would do in this situation.
Randy in the Morning
Randy has moderate dementia. He lives in an assisted living facility with 24-hour care and participates in an adult daycare program each week on Monday, Wednesday, and Friday. This morning, Randy arrived a little early and is waiting for breakfast in the activities room. Ann, a personal care assistant, enters his room and calls out to him, “Come on Randy. Are you hungry? Did you sleep well? Time for breakfast! Stand up. Let’s go.” Randy doesn’t move, so Ann tries again, “Come on, Randy, get up! You don’t want your breakfast to get cold, do you? I don’t think so. Come on Randy, I’m really busy!” Ann takes his arm and helps him stand up. Randy pulls away and sits back in his chair.
What Is Randy Thinking?
Randy 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 is saying something to him in a loud voice. He is trying to figure out what she is saying—when she says something further. 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 from the young woman and turns away. He tries to ignore her, hoping she will go away.
What Is Ann Thinking?
Ann is really busy. Her co-worker called in sick so she was asked to cover at the last minute despite having just completed a night shift at the local nursing home. She is tired and wants to get Randy to the dining room for breakfast. After breakfast she wants Randy to go back to the activities room. She tells him it’s time for breakfast, takes his arm, and tries to help him stand up. Randy 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 approach Randy quietly and respectfully. She should ask “Good morning Randy”, and wait for Randy’s reply. Approaching Randy more slowly, squatting next to him, introducing herself, and offering her upturned hand gives Randy a chance to understand who she is. A pause at the end of each sentence gives Randy time to respond. “Hi, Randy.” Pause. “I’m Ann—I’ll be helping you today.” Pause. “How are you?” Pause. “It’s 9 a.m.” Pause. “Time for breakfast.” Pause. If Randy doesn’t respond, Ann can repeat what she just said in a calm voice or ask another short, closed question: “Randy, would you like to join me for breakfast?” Pause. Now Randy only has one simple statement to think about and he is more likely to understand and respond. Ann must remember that Randy doesn’t have to do what she asks. It’s okay for Randy to have his breakfast in his room or even skip breakfast and eat when he is hungry.
Strategies and Guidelines for Verbal Communication
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 us the opportunity to assess the well-being of the person we are caring for.
A 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 puts people at ease. Nonverbal gestures such as head nods, a light touch on the arm, and a warm expression create trust.
No matter how severe the dementia, practice these habits:
- Approach from the front, then kneel down to the side.
- Take a deep breath, relax, and offer your hand.
- Take a moment to really look at the person.
- Greet the person using their name, then introduce yourself.
- Avoid standing over the person, which may appear threatening.
- Ask a short, 1- or 2-step question and wait for a reply.
- Be attentive and sympathetic.
- Continue the conversation by asking a followup 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 verbal conversation. Some residents may understand gestures better than the spoken word.
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.
National Institute on Aging. Public domain.
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 other 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.
Develop good communication skills by:
- Listen respectfully, giving your full attention.
- Understand cultural and generational differences.
- Provide comfort using gentle, appropriate touch* and reassurance.
- Redirect to a pleasant activity if the person is feeling anxious or upset.
- Avoid arguments.
*Appropriate touch refers to professional and ethical behavior while considering the individual’s religious, cultural, and personal preferences.
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 appropriate touch to communicate your intentions.
- Avoid a condescending tone.
Communicating with Residents Who are Non-Communicative or Non-Responsive
As dementia progresses, verbal communication becomes increasingly challenging. Toward the later stages, verbal language may disappear altogether. People living with dementia may make nonverbal attempts to communicate, but these are often ignored, misinterpreted as “challenging” or judged incomprehensible. Communication difficulties are not only misinterpreted as signifying that people with dementia have nothing to contribute, but that they have lost the desire to participate in the social world (Ellis and Astell, 2017).
A lack of social interaction leads people with dementia to withdraw from social life and has a negative impact on caregivers as well. When faced with someone who has lost the ability to speak, caregivers often withdraw from those they care for. This may be due to discomfort on the part of caregivers who distance themselves as a method of coping with the demands of the situation. Finding alternative methods of communication has the potential to improve not only the quality of life of people with advanced dementia, but also the job satisfaction of care staff (Ellis and Astell, 2017).
Using nonverbal communication, such as soothing music, sounds, movements, appropriate touch, and facial expressions, has the potential to keep people with advanced dementia in the social world. Examples include:
- Encouraging participation in art: drawing, scribbling, painting
- Using scents and smells to evoke memories
- Holding hands
- Using photos and pictures
- Playing favorite music or tunes
- Movement and dancing
Validation therapy is a type of interactive cognitive therapy developed by Naomi Feil for use in older adults with cognitive disorders and dementia. It arose from Feil’s experience as a young adult watching what she felt was the failure of reality therapy in this patient population. She developed validation therapy as a method of working with patients she described as severely disoriented.
Validation therapy focuses on accepting the reality of the person living with dementia by focusing on the emotional content of a person’s words or expressions. The aim is to reduce negative feelings and enhance positive feelings. Validation therapy is implemented through the use of certain communication techniques, including using nonthreatening words to establish understanding; rephrasing the person’s words; maintaining eye contact and a gentle tone of voice; responding in general terms when meanings are unclear; and using appropriate touch (Scales et al., 2018).
Validation theory explains that many (very) old, disoriented people, who are often diagnosed as having Alzheimer type dementia, are in the final stage of life, trying to resolve unfinished issues in order to die in peace. Their final struggle is important, and caregivers can help them. Validation techniques offer disoriented older adults an opportunity to express what they wish to express, whether it is verbal or non-verbal communication. When disoriented older adults can express the things that may have been suppressed for many years, the intensity of the feelings lessen, people communicate more, and are less likely to withdraw into further stages of disorientation (VTI, 2021).
Validation therapy states that:
- Very old people struggle to resolve unfinished life issues before death.
- Caregivers should use a basic, empathetic attitude that respects and values very old people without judgment.
- Caregivers should use specific techniques for individual as well as group work, based on the needs of the individual and his or her phase of resolution (VTI, 2021).
Situations in Which Validation Therapy Is Useful
The use of validation in dementia care is a way of demonstrating to the client that their feelings, thoughts, and opinions are acknowledged and respected by the caregiver. A combination of validation and reminiscence helps confused clients experience joy from their earlier life and contributes to their overall quality of life (Zeman, 2015).
Validation therapy is useful in any situation in which a caregiver, family member, or professional must interact with a person who has dementia. Because validation therapy provides techniques for approaching and communicating with a person with dementia, it is particularly helpful in preventing a reaction that might escalate into an unwanted behavior. It is also useful for calming and diffusing challenging behaviors.
Charles Lashes Out at Frances
Frances, a physical therapist working in an assisted living facility, was wheeling her client Charles to the activities room. Charles was quiet and relaxed as they moved down the hall. About fifty feet from the activities room, Frances was stopped by two co-workers who engaged her in a conversation about another client. All three were standing behind Charles, talking animatedly. Frances placed her hand on Charles’s shoulder to reassure him and he angrily pushed it away, yelling in a loud voice “Stop that!” When one of Frances’s co-workers tried to calm him down, Charles yelled again and tried to hit the woman.
If Frances and her co-workers were familiar with validation therapy or another dementia-specific communication technique, they could have prevented this incident entirely. Instead of ignoring Charles and talking over him, the physical therapist might have stopped, kneeled down beside Charles, offered her hand, and introduced her colleagues. She might have asked Charles if she could talk for a moment with her co-workers or included him in the conversation, while reminding her colleagues that nobody likes having people stand over them. If Charles seemed uncomfortable, she could have asked her colleagues to wait until she and Charles finished what they were doing and continued the conversation after Charles was seated at the activities table.
This is a situation that didn’t need to cause Charles discomfort. If Frances and her co-workers had been respectful of Charles and validated his needs and preferences, they could have avoided upsetting him and modeled good practice for their colleagues.
Reality Orientation Therapy
Mostly, I think the desire to “reorient” a person with dementia is that of the caregiver, not the resident. It can be really irritating when someone doesn’t share your reality—it seems obvious what the date is, what town you’re in, and who your daughter is. I think sometimes caregivers feel they’re doing something positive when they constantly correct and remind a person experiencing memory problems. They don’t understand how frustrating it is to be scolded and corrected all the time.
Physical therapist, West Palm Beach, Florida, 2021
Reality therapy or reality orientation is based upon the idea that a person who has lost contact with reality can be guided back to reality and that this process will help a person accept and deal with the reality of their situation. First proposed for use in confused, older adults, reality therapy is intended to support a client’s own insights into the truthfulness of their situation.
For people who are confused or disoriented, reality therapy is designed to improve cognitive and psychomotor function. It is often employed to help clients focus on their immediate surroundings. With this technique, caregivers actively and repetitively present information needed to orient clients to the time and day, as well as their environment and the people around them. This process is most helpful for the person in early stages of dementia (Zeman, 2015).
For most of us, being oriented to reality is essential. But reality orientation isn’t helpful if the person is in mid- to late-stage dementia. Short-term memory loss and cognitive deficits make it impossible to remember or even understand much of this information. Trying to get the individual to focus on reality when significant confusion and cognitive loss are present can increase confusion and cause agitation (Zeman, 2015).
Joining Residents in Their Own Reality
When a person with dementia has a delusion or hallucination, or another type of challenging behavior, “getting into their reality” may allay fears, address a problem behavior, or help the caregiver figure out its cause. This often leads to simple, commonsense solutions. It also helps improve the quality of life for the individual by fostering trust in the caregiver and reducing dependence on medications to manage negative behaviors.
Validation Therapy vs. Reality Orientation
Validation therapy and reality therapy differ in a number of ways. Validation therapy deals with a person’s feelings. It is not intended to improve a person’s cognition or to delay cognitive decline. It is intended to draw people out, encourage communication, and validate a client’s personal truth. When used consistently, validation therapy can reduce the number and intensity of challenging behaviors, decrease the use of drugs used to treat these behaviors, and provide comfort to the person with dementia.
Reality orientation, on the other hand, is intended to reduce cognitive decline using repetitive activities that reinforce name, date, place, and time. It is based on the belief that continually and repeatedly telling or showing certain reminders to people with mild to moderate memory loss will result in an increase in interaction with others and improved orientation. This in turn can improve self-esteem and reduce problem behaviors (Takeda et al., 2012).
Getting into Polly’s Reality
Note: In this scenario, caregivers decided to use a “white lie” to encourage Polly’s participation in daycare activities. Lying to a resident is acceptable only as a last resort and if the truth leads to a poor outcome.
Introduction: For older adults, participation in activities provides respite for family caregivers while offering socialization for residents with dementia. Sometimes, success requires a little creativity.
Client Information: Polly is 75 years old and lives in an assisted living facility with her husband, Mel, who still works fulltime as a lawyer. She has moderate dementia, is independent in all basic activities of daily living but is no longer able to drive, shop, or manage complex tasks without the help of her husband. Polly had worked as a secretary in a law office for almost twenty years. When she retired, still wanting to keep busy, she took a part-time job at a nursery school and volunteered at the local animal shelter. Polly described herself as a “people person.”
Timeline: The activity director did her part to help Mel when he called and asked about his wife participating in the facility’s activities program. Mel believed Polly would do well there. Visiting the next day, he was impressed. Polly could participate in activities for the whole time he was at work, and professionals would make sure she was safe, had a good lunch, a nap if she needed one, and activities she would enjoy. It seemed like the ideal solution, and Mel thought it would allow him to continue working for another year or two.
Polly, however, had other plans. She did not like the idea of a “daycare center," and especially the people she imagined were participating. She told Mel she was “not one of them.” She refused to consider it and decided she wanted to go back to work instead. She told Mel she needed to be around people, enjoy her job, and have things “like they used to be.”
Intervention: Not knowing what else to do, Mel called the activities director for suggestions. That evening, Mel explained to Polly that her previous employer had hired another person. Her old job was gone, but if she was interested, he found another job for her. He told her he thought she would like it because she could be around a lot of other people.
The following day he and Polly walked over to the activities center. Mel explained that it was a place for people who had problems with their memory, and they were looking for help. The director greeted them and told Polly they wanted to hire her because they needed someone to help the staff keep the people happy and engaged in activities. Her job would include talking to them, helping to set the table for lunch, handing out snacks, accompanying others to activities, and helping with pet therapy. Polly was given a tour of the activities room and was treated as if she were a prospective employee. On the tour she saw the attendees in various activities including group exercise, a reminiscence circle, and flower arranging. She also met the pet therapist, who was bringing in two beautiful dogs that Polly admired.
Discussion: Mel was pleased that the activities center had recognized Polly’s need to “work” and their willingness to use that to encourage her participation. Of course, they knew that no real demands or expectations would be placed on Polly and that she would be encouraged to make friends and enjoy the activities. They waited to see what Polly’s decision would be.
Client Perspective: Polly did decide to take the “job” at the center. For a few weeks, she managed to hang on to the idea that she was there to work with the other people who had dementia. But gradually, Polly just enjoyed going to the center to see her “friends.”
Source: Adapted with permission from Kisses for Elizabeth: A Common Sense Approach to Alzheimer’s and Dementia (2012), by Stephanie Zeman, RN, MSN.
An individual’s physical and mental condition is only part of what makes them tick. The roles they fill in contemporary life as well as their culture, ethics, spiritual beliefs, education, and the choices they made in earlier life are unique to each person. Commonsense dementia care addresses the needs of the person with dementia, not just the dementia in the person we care for (Zeman, 2015).
For healthcare providers working with a client who has dementia, Stephanie Zeman, in her book Kisses for Elizabeth: A Common Sense Approach to Alzheimer’s and Dementia (2012), recommends the following guidelines when working with a person with dementia:
- Imagine yourself in the person’s place.
- Avoid reality orientation except for early-stage dementia.
- Validate the person’s feelings.
- Practice good communication skills and encourage independence.
- Avoid judgement, arguing or saying no.
- Consider the whole person, not just the dementia.
- Learn to use “feel goods” such as a hot bath, a cup of coffee, going to a movie, or even offering a piece of chocolate.
- Arrange for meaningful and important activities each day.
- Keep your sense of humor and use it wisely.
- Remember that religion can be a comfort.
- Expect the unexpected.