The Alzheimer’s Caregiver®

Guidelines for Improving Communication

Welcome to the educational program Guidelines for Improving Communication. This program will help you to understand the changes in communication associated with Alzheimer’s disease, why good communication skills are critical for good caregiving, how to use these principles and strategies for improving communication with someone with dementia, and how to create environments that help communication.

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This is Lesson 11 of The Alzheimer’s Caregiver. You may view the topics in order as presented, or click on any topic listed in the main menu to be taken to that section.

We hope that you enjoy this program and find it useful in helping both yourself and those you care for. There are no easy answers when it comes to the care of another, as every situation and person is different. In addition, every caregiver comes with different experiences, skills and attitudes about caregiving. Our hope is to offer you useful information and guidelines for caring for someone with dementia, but these guidelines will need to be adjusted to suit your own individual needs. Remember that your life experiences, your compassion and your inventiveness will go a long way toward enabling you to provide quality care.

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Communication Changes

For those with Alzheimer’s disease, the capacity to understand language and to express thoughts, emotions and needs becomes more difficult as the disease progresses. They may not be able to understand what you are saying or only be able to grasp part of it. They may have difficulty finding a word and say a related word instead of the one that is forgotten. They may even talk fluently but not make any sense, or repeat the same phrase or word without meaning or purpose. They also lose their reading and writing skills.

Because of memory loss, those with dementia may not be able to talk about recent events or people they have recently met. Distant memories typically remain intact until the later stages, but eventually, even old memories and family members may be forgotten. Therefore it may be difficult for them to respond to questions such as, who is this, where are you, or what did you do last week?

Memory loss also shortens the attention span, so they may forget the purpose of an interaction or lose interest while it is happening.

Lastly, they lose conversational social skills and so may respond inappropriately by interrupting or ignoring other speakers.

Goals of Communication

Let’s discuss why good communication skills are important by reviewing the goals of communicating with those with dementia.

One goal is to assist the individuals with functioning and performing activities of daily living, such as bathing, dressing, and eating.

A second goal is to gather information about their needs or wants. Caregivers must know the individuals well and be very perceptive and patient with their attempts to communicate.

It is also important to monitor how they are feeling and check for any pain or discomfort.

Caregivers should also try to protect those with dementia and provide them with support. When someone feels confused or overwhelmed, the caregiver may have to help that person to understand what’s going on. This can be done by simplifying things and providing information so that the individual can respond appropriately. Or some situations may require that the caregiver speak on someone’s behalf based on what that person most likely would have wanted to say.

Another important job for caregivers is to help people with dementia remain connected to the world. Without caregivers who can provide links to the world, those with dementia can eventually lose connections to their environment, their past, their friends and family, and even their own sense of self.

An additional goal of communication and caregiving is to prevent problems and difficult behaviors by observing and listening to those with dementia, making sure that they are comfortable, and addressing their needs and wants.

The final goal is to build a caring, trusting relationship between the caregiver and care recipient. A good relationship makes caregiving easier and more rewarding. Learning good communication skills can help to achieve all of these goals.

Principles of Good Communication

Good communication skills are based upon some basic principles of communication. The first principle is to show respect. You can do this by addressing individuals by their preferred names and/or titles and by using good manners. People learn about good versus bad manners in early childhood and those memories tend to persist into the later stages of dementia. Therefore people with dementia can usually appreciate good manners, so try to say please and thank you, as you would when speaking to anyone else. Do not talk down to those with dementia or treat them like children. Instead, keep the conversation simple, but at an adult level. Avoid using eldertalk, which is similar to baby talk or the use of a high pitched, sing-song tone of voice. inviting individuals to participate in something rather than demanding that they do it. In addition, if individuals with dementia are in the room, do not discuss them with others as if they are not present, even if you think they do not understand. In conversation, it’s best to avoid topics that you know can trigger difficult behaviors. If the topic is unavoidable, try approaching it in different ways or in different settings that may be more relaxing. Be sensitive to the early signs of agitation and difficult behaviors. This includes paying attention to people’s feelings and emotions rather than their words. There may be signs in their body language or mannerisms that may immediately precede problem behaviors. If you see the early signs, try to back off or divert their attention onto another subject. Keep in mind that words are not the only form of communication. It is very important to effectively use non-verbal forms of communication, such as facial expressions, tone of voice and body language to convey how you feel. This is especially important when someone is having difficulty understanding the conversation. A smile, a gentle touch and a kind voice can express so much more than words.

Caregiver’s Attitude and Approach

The caregiver’s attitude and approach to communicating with someone with dementia affects the quality of caregiving. Here are some tips for maintaining a positive approach to caregiving.

First, have a good sense of humor. Laughter is a great way to overcome a difficult situation or distract someone from negative thoughts or behaviors. Smiling and laughing will also help everyone feel better.

Keep and show a positive attitude. Try to focus on the positives, and pose things in a positive way. Show a positive attitude in your facial expressions, body language, and tone of voice, as your emotional tone can convey more meaning than the actual words you use.

Approach caregiving as a collaborative effort between the caregiver and the care recipient. Communicate as if everyone is an important member of a team. Everyone likes to feel important and needed. So treat those with dementia as if they can make valued contributions. Let them know that their remaining abilities are useful and appreciated. Try to encourage and help them to contribute. For example, if you ask someone to participate in an activity, such as folding laundry, communicate the request in such a way that the person’s participation is of value. “ I could really use your help with the laundry. You always do such a nice job with folding the clothes!”

When challenges arise, try to find productive solutions that involve the whole team, including the person with dementia.

Use a non-judgmental approach. Try not to judge or blame the person for negative behaviors and challenging situations. Remember that the disease is causing the change in personality and loss of abilities.

Remain open-minded and learn about cultural differences that may affect communication, such as language, symbols, and physical contact.

Lastly, give priority to the person’s wants or needs.

Case Study 1

Let’s begin with a case study about communication issues between Robert and Sally, Robert’s caregiver during the day when his wife is not home.

Why did Robert fail to follow Sally’s instructions?

A. Sally did not get Robert’s attention before starting to speak.
B. Sally assumed that Robert knew where the bathroom was.
C. Sally gave too many instructions at once.
D. Sally left without seeing if Robert understood the instructions or needed assistance.
E. All of the above.

Case Study 1 Answers:

Choice A: “Sally did not get Robert’s attention before starting to speak” is an excellent choice.

Although the Sally addressed Robert politely and used his proper name, she should not have assumed that the person was paying attention and listening. Communication requires that the individuals pay attention to one another. The caregiver should always make a conscious effort to get the person’s attention. Aging can also reduce the sense of hearing, so getting someone’s attention before speaking is very important.

Choice B: “Sally assumed that Robert knew where the bathroom was” is also a great choice.

Dementia can affect people’s navigating abilities and their orientation. Even if Robert has been to the bathroom a thousand times, he may not be able to remember where it is. Do not assume that someone with dementia remembers things, as memory can fluctuate from day to day.

Choice C: “Sally gave too many instructions at once” is a very good answer.

Dementia can limit the ability to process information, so handling multiple instructions or trying to decide among multiple choices can be very confusing. Giving multiple instructions at one time can reduce the chances of having any of them followed. To help prevent this from happening, give instructions using simple sentences with no more than one or two directions at a time. Choice D: “Sally left without seeing if Robert understood the instructions or needed assistance” is another excellent answer.

Part of good communication includes checking to make sure that the person understands what you say and is able to follow your instructions.

Choice E: Because Choices A through D are all good answers, Choice E, “all of the above,” is the best answer.

Guidelines for Better Communication

Here are some guidelines and tips for improving communication. First, make sure that the person is paying attention to you. To get someone’s full attention, face the person and maintain eye contact while speaking and when listening. When communicating, always try to be at eye level with the other person rather than standing above them. If the person is standing, you should be standing. If they are sitting, you should be sitting. And stay in one place, so that the person is not distracted by trying to follow your movements. Watch as well as listen. People with dementia sometimes pretend to understand in order to hide their confusion. Even if they say that they understand what is being said, watch to see if what they do demonstrates understanding. Remember that good communication is a two-way exchange. Speak slowly and clearly with a pleasant tone of voice. Your tone of voice and emotional tone can convey more than words, particularly during the later stages of the disease when verbal understanding may be limited. Use body language such as facial expressions, pictures, and gestures to convey your message. If people are having difficulty holding up their part of the conversation, try to help them to participate. Try to help find the words that they may be having a hard time remembering. Or ask them to explain in a different way. Offer clues about how they can answer questions if necessary. Demonstrating, pointing, showing, and touching objects and pictures may help with memory and understanding. Orient the person by combining both verbal and physical cues about who, what, when, where, and why into your conversation. Show the person where to find things, such as the bathroom or household objects. Use body language and verbal cues to help the person focus on the conversation. You can make this into a fun, shared activity.

Guidelines for Better Communication (Continued)

Try to avoid topics or phrases that point out the person’s memory problems, such as, “remember when?” Remember that memory can fluctuate from day to day and even moment to moment. Try talking about events that are likely to be remembered, such as more distant memories, or everyday things like the weather. Another way to help the person remember things is not to rush while communicating. Allow plenty of time for the other person to comprehend and respond. You should also avoid pointing out errors, arguing, criticizing, scolding, or embarrassing the person. Trying to reason with someone with dementia is often frustrating and pointless, especially in the later stages of the disease. Offer reassurance rather than correcting them. Another good idea is to focus on one topic at a time by providing continuity. This is achieved by staying on the same topic without changing focus too often. If the topic needs to be changed, provide direction to the new topic. In general, keep sentences short, simple and direct. If the person is having trouble understanding you, try using easier words and concepts. Use nouns and names rather than using “he “ or “she.” For example say, ‘Your daughter, Nancy, is coming for a visit,’ rather than, ‘She is coming for a visit.’ You should use the most important word last when speaking since people tend to remember the last word best. Lastly, use empathy and validation to focus on the person’s feelings. If the person is frustrated, upset, or sad, use phrases such as, “I understand you are upset,” or, “I’m sorry you are feeling sad,” to provide comfort rather than criticizing or dismissing the feelings. Carefully observe the emotions, behaviors, and the environment to reflect back to the person what you believe is going on. This lets others know that you care about their feelings.

Case Study 2

Here is an example of Sally, Robert’s caregiver, communicating with him using empathy and validation. Today Robert prefers to be called Dr. Jones.

Effective Communication Skills

Let’s look at some of the effective communication skills that Sally, used.

First, she slowly approached Robert and called him by his preferred name, Dr. Jones. Caregivers should know how individuals prefer to be addressed.

Next, she stated what she believed Robert was trying to communicate. She saw that Robert wanted to go out and heard that he needed to go to the office. Sally tried to make it clear that she understood by saying: “I understand that you want to go to your office to work.”

This is called rephrasing, which lets others know that you have understood what you have heard and seen, and validates the speaker and the message. Knowing about the person’s personal history can help the caregiver better understand what the person is trying to express.

Asking questions such as “who, what, where, when, or how” are good in appropriate situations. It is best to avoid using “why” questions, as they can come across as being critical of the person’s behavior. Be aware that in the middle and late stages of dementia, people may have difficulty answering too many questions.

Sally then restated Robert’s words back to him by saying, “But the door is locked.” This strategy is called reflecting, which lets the person know that you are paying attention and acknowledging their words.

Sally also acknowledged the emotional expressions on Robert’s face and his body language by stating that he looked worried. This is called matching the emotions with words.

Additionally, she displayed reinforcing behaviors with her smiles and gentle touch.

Lastly, she used a strategy called reminiscing, which redirected or distracted Robert and helped to reduce his distress by asking questions about something that he would remember from his past, such as his office.

Giving Instructions

In order to increase the likelihood of successfully completing an activity, it is important to give clear, easy instructions and to simplify tasks. When giving instructions, break down the activity into one or two simple steps at a time. As the disease progresses, you should break down activities into smaller, simpler parts. Focus first on familiar tasks and then encourage the person to practice new skills by giving specific, simple instructions in a pleasant voice. For example, rather than telling someone to get dressed, ask the person to put on a shirt. After that is done, ask the person to put on pants, and so on with each article of clothing. Be positive and supportive by paying attention and being there to help when needed.

You may have to demonstrate steps for people, or assist them in what steps you need them to do, but don’t ever force a step. A good way to keep steps moving along is through the use of chaining, or linking activities together so that one action prompts the next action. One way to chain is to break tasks into a sequence of actions that lead to task completion, treating each action in the sequence as an independent activity and assisting the person in performing each activity. For example breaking down getting dressed by each article of clothing. Another way to chain is to put sets of related tasks together to provide a regular, consistent situation. For example, washing hands before a meal.

If coaching is needed, try gentle hand-over-hand guidance, which involves putting your hand over the person’s hand to guide them as you complete an activity together.

You can also use cuing and prompting to help the person recall the needed behavior. Cuing involves giving a verbal or non-verbal clue for doing an activity. An example of cueing would be to place a spoon in the person’s hand to cue that person to eat.

Asking Questions

When asking questions, keep in mind that some types of questions are easier to manage for persons with dementia than others. First, try to ask easy questions that require yes or no responses. If there are choices involved, limit the number of choices to two or three if possible, presenting one option at a time.

If the person has significant memory loss, try to provide information rather than asking for it, as asking too many questions may set them up for failure.

It is also best to avoid using why questions, because they often come across as being critical of the person’s behavior.

When asking about the person’s well-being, whether it be physical, mental, or emotional, try using the unfolding technique. To use the unfolding technique, start by asking the person whether they have a particular symptom or feeling. If the person answers “no,” then ask about another symptom or feeling. If the person answers “yes,” then ask about the frequency and severity of the symptom. For example, first ask the person, “Have you been feeling anxious? If the answer is “yes,” then ask the person to estimate how intense the anxiousness feels. Then ask how often the person feels anxious. After you have “unfolded” a clear picture about a particular symptom, move onto another symptom, such as pain. This manner of asking questions allows you to gather information in an efficient manner.

Creating a Communication-Friendly Environment

Visual changes can impair communication. The visual changes associated with aging can cause difficulty with seeing details, such as facial expressions, reading small print, distinguishing colors, accommodating to lighting changes, and seeing in glare or backlighting. These difficulties often lead to the misinterpretation of the visual environment.

Some strategies for improving communication with those with visual problems include reducing the glare from lights and providing extra light on detailed tasks. Try to use stark color contrasts. Also, try to avoid standing in backlighting or in shadows when you are talking to someone, making sure that your face is easy to see and that you are directly facing the person. Provide handheld magnification and eyeglasses if necessary, and make sure that they are clean and free of smudges. Eyeglasses should have a proper fit and be placed on the face correctly.

Remember that following instructions may take longer, so allow for plenty of time with everything. The visually impaired also need extra time to adjust to changes in lighting, so if you are going to turn a light on or off, tell the person before you do so, and provide time to adjust to the change.

Communicating with the Hearing-Impaired

Hearing changes associated with aging often occur gradually and can cause difficulties with communication. Hearing loss can also reduce a person’s physical, functional, emotional, and social well-being.

Some strategies for communicating with the hearing-impaired include making sure that you have the person’s full attention before speaking. A gentle touch to the arm works nicely. Also, make sure that you are directly facing the person and not standing behind them, or covering your mouth when speaking. Make sure to lower your voice pitch and speak slowly and distinctly. Never shout at the person, as it does not help them to understand and may even cause them to become agitated. In addition, shouting increases the pitch of the voice, which actually makes it more difficult to understand. Reduce or remove any background noises and distractions and make sure that any hearing aids are properly working. This includes checking the batteries and the sound level. Make use of non-verbal body language like gestures and facial expressions to help convey meaning.

Lastly, match the content of your message to the environment in which you deliver the message. For example, you should ask whether the person has had a bowel movement while you are both in the bathroom, but not while in the dining room.

Summary

Good communication is the building block of a caring and trusting relationship between a person suffering from dementia and the caregiver, but as you know, communicating with someone suffering from Alzheimer’s can be very challenging. As a caregiver, it is important for you to help the person stay protected, comforted and connected to the world, as well as perform the activities of daily living and improve quality of life.

To do this you must start with a positive attitude and some key strategies that include showing respect, being flexible and patient, avoiding topics that trigger agitation or point out memory problems, and being sensitive to non-verbal behavior. In addition, you should approach caregiving as a collaborative team effort in which the person can make valued contributions.

It is important not to assume that the person with dementia remembers things, or understands what you are saying, as memory can fluctuate from day to day. Because of this, you may need to modify activities and instructions on a daily basis. Some strategies to help ensure your successful communication include making sure that the person is paying attention to you focusing on one idea at a time; speaking clearly, making sure to use simple, direct instructions and the important words last; using body language that match your words, including facial expressions and gestures; using cues, prompts, questioning techniques such as unfolding and limiting the number of options available; creating a pleasant environment that promotes communication by reducing distractions and sources of stress; and trying not to point out errors, argue, criticize, scold, or embarrass the person. These strategies will help establish a caring, and trusting relationship. By using these strategies and having an open-mind, you can prevent problems and difficult behaviors before they arise.

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Written by: Linda R. Phillips, R.N., Ph.D., F.A.A.N. (UCLA School of Nursing)

Edited by: Mindy J. Kim-Miller, MD, PhD (University of Chicago School of Medicine)

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