7

Connecting

Communicating with “Knack”

At a support group meeting, one man expressed frustration that the notes he was leaving on the refrigerator door for his wife with Alzheimer’s disease were not working. He had hoped the notes could serve as important reminders whenever he left her alone in their mobile home to run a brief errand. A typical note might be “Take your medicine at noon” or “Don’t leave the house!”

He might as well have been leaving the notes in an ancient language. Why? Because his wife might read the notes and not understand them; might read the notes, but then, due to her poor memory, almost immediately forget the message; or might not even remember to read them at all! Refrigerator notes, even with lots of cute magnets drawing attention to them, normally don’t work or become ineffective over time.

The loss of communication takes its toll on the relationship between the person and his or her care partner. It makes it much harder to get the person dressed or to discuss everyday problems and concerns. If something wonderful happens—a new grandchild, a successful fund-raiser you have chaired, a published poem in an anthology—you may not be able to fully communicate these experiences to the person with dementia. Husbands and wives may no longer be able to talk over problems and concerns or share in important decisions. Adult children may no longer be able to count on a parent for helpful advice. Two brothers may no longer be able to talk at length about their favorite sports team. Day-to-day communication becomes increasingly difficult. All of this adds to the challenges of caregiving.

The Best Friends approach has many powerful elements that will enhance communication with people with even advanced stages of dementia. Again, we look to the elements of friendship for inspiration. Good friends communicate in many ways, including verbally and nonverbally. Good friends also make an effort to communicate. Good friends come to understand each other well.

Individuals with Alzheimer’s disease or other dementia retain the need to communicate long after their vocabulary and language skills diminish. They want to understand and be understood. However, you as the care partner must also have a desire to communicate with and be present for the person.

BEST FRIENDS PHILOSOPHY OF COMMUNICATION

In good dementia care, it takes a Best Friend to reach out and make a meaningful connection. Here is how it is done.

Remember the Basics of Good Communication

The principles of good communication still apply in dementia care. Communication is enhanced by good eye contact; specific, descriptive language; appropriate volume and tone; and appropriate gestures and body language. However strange it may feel to you, an important first step in approaching a person is to introduce yourself and explain your relationship to him or her, even if you are a family member. When you help out by saying, “Hi Lorraine, it’s me, your sister, Mary,” you are setting the stage for a positive interaction. Even if she says that she knows who you are and expresses irritation that you have introduced yourself to her, it’s possible she didn’t really know. Use common sense in these situations but err on the side of better communication.

Nonverbal Communication Paints a Picture

People with dementia are particularly attuned to the care partner’s tone of voice, facial expression, volume, and hand gestures. Body language counts! It is as if you are speaking to someone who doesn’t speak the same language as you—he or she is looking for cues and clues from the encounter and not relying completely on your spoken words. Examples of positive body language include smiles, offering a handshake, hugs, and standing tall with enthusiasm! Just as important is looking at the person’s body language to judge his or her mood. Is she looking worried or anxious, pacing, rubbing her hands, or is she sitting calmly, smiling, and watching the world go by?

The Importance of Positive Body Language

If we need help or are lost and need directions, most of us intuitively look for someone friendly and approachable. A stranger’s smile or scowl when you first approach him will determine whether you ask for assistance. The language skills of the person with dementia are diminishing, but he or she can still “read” your face and body language. The person may not understand your words and may not always recognize you, but he or she still recognizes the positive intent of a smile, a handshake, or even an inviting and open posture.

Create an Environment That Facilitates Good Communication

Remember to always consider the environment from the point of view of the person with dementia and how it might inhibit communication. Individuals with memory loss receive messages from everything in their surroundings. Therefore, to aid communication, the environment should be well lit, uncluttered, and pleasant. Be sure it is free of distractions and ambient noise. Try to facilitate interactions in whichever room in the house is most suited to conversation.

Treat the Person as an Adult

Use simple language but keep it adult in nature. “Baby talk” is almost always a bad idea. Likewise, you do not need to speak so slowly that it becomes ridiculous. Also, be aware of and try to avoid the tendency to use the “royal we.” To say to the person, “Let’s take our medicine” when he or she is the only one taking a pill can be confusing. If you say, “Let’s put on our pants,” the person might genuinely wonder who will be wearing the pants!

Treating the person as an adult is an important part of maintaining good communication. Adults want to talk about meaningful subjects, engage in activities that are meaningful, and have choices about their lives. For example, one care partner we know wakes his mother up with a nice cup of coffee, discusses the schedule for the day, offers her a simple choice about her clothes for the day, and tries to engage her in a conversation about something in the day’s news (“Mom, today is Mark Twain’s birthday”). He says he strives for a sense of normalcy that it is calming for both of them.

Maintain Integrity

It is best to start from a position of truth whenever possible when being asked questions by the person or in discussing various situations. People with dementia are often more resilient and flexible than you would imagine. However, if truth telling creates great stress or prevents important tasks from happening, we believe it is ethically permissible to withhold information or to deal with situations with finesse. For example, if the person has lost a set of dentures and refuses to replace them due to the cost (even if he or she has plenty of savings; perhaps the person has a delusion of being broke), you may stretch the truth by saying that “insurance will pay for them.” You are doing this for the person’s health and best interests, not your own convenience.

Use the Person’s Life Story Often

People with dementia can recognize things from their Life Story even when they cannot retrieve the memories on their own. Using the Life Story can enhance communication in all kinds of ways, including providing cues during personal care, enhancing conversations, and helping you prevent challenging behaviors. For example, if your father is refusing to take a shower, you might find that talking about his favorite baseball team and love of old cars might create a better mood and foster cooperation. If your loved one is in a residential care community or day center, it is vitally important that staff know his or her Life Story well if they are to give the best possible care. See Chapter 5 for more on the Life Story.

Respond to Emotional Needs

If the person can articulate concerns or feelings about his or her illness, you should empathize and validate them. (“It must be difficult when you forget things. That happens to me sometimes, too.”) It is also important to try to understand the emotion behind unintelligible words. If the person seems upset, you can say, “I’m sorry about that.” When he or she seems happy, you can say, “That must have been great!” Touch and hugs can make an emotional connection and provide reassurance.

Remember That Behaviors Communicate a Message

Early in the disease, the person probably can communicate feelings and problems in words; later, his or her behavior articulates what words cannot. If he is yelling or striking out, this can signify that he is in pain or has an infection and needs medical attention. Wandering can suggest boredom. Tears can suggest loneliness and the need for more activity and interaction with other people. When you stop, look, and listen, the person’s behaviors communicate many things.

The Best Friends Philosophy of Communication

Do Not Take the Person Too Literally

Have patience, and recognize that the disease process affects the person’s ability to remember and use words. For example, the person may think he or she is being clear but may be using the wrong word. He or she may say, “Hand me that glass” while really meaning, “Hand me that toothbrush.” The person may know who you are but not be able to get the name out correctly. With dementia’s attack on the brain’s language centers, words, sentence structure, and language are failing.

Employ Good Timing

Good timing is an art. It is always helpful to observe the person’s patterns and habits. Is he or she a morning person or a night owl? Knowing this can help you strategize about the best time of day to approach him or her for a bath or other tasks. Good timing also involves patience in speaking and listening. If the person is trying to say something, give him or her time to speak, but do not let the struggle for words go on so long that frustration sets in. If you try to start up a conversation and strike out, don’t completely give up. Try again later in the day; you may then find success.

Use Repetition to Facilitate Better Communication

Asking a question twice, with additional descriptive cues for greater emphasis, can help the person better understand what you are saying: “Uncle Matt, hand me that rake [pointing]. Please, Uncle Matt, hand me that green rake over there with the wooden handle [pointing].” In this case, the repetition involves more descriptive language and specific nouns instead of nondescript pronouns (“the rake” versus “it”).

Do Not Argue or Confront

It is virtually impossible to win an argument with an individual with dementia. For example, if your mother says President Clinton is doing a good job, ask her to tell you more about that instead of telling her that he is no longer president. Trying to present an argument or to convince the person of a particular point of view will lead to frustration and failure. Also, confrontation will only cause the person to be more defensive, further harming communication. This means curbing your own defensive reactions when the person makes unjustified accusations or complaints against you. Letting go of the little things and not arguing is one of the most important lessons for successful care.

Screen Out Troubling Messages or News

Individuals with dementia have difficulty sorting information; therefore, it is important to screen out sad, violent, ominous, or controversial messages when possible. Be careful not to listen to television news excessively or talk about negative headlines from the newspaper or websites. Even distressing stories with a happy ending can cause the person to worry. For example, if a neighbor tells him that her dog ran away but was later found, he may still dwell on the first part of the message.

Use Positive Language

People with Alzheimer’s disease are often still proud and may resent being told what to do. Whenever possible, speak to the person using positive language. It is better to say, “Let’s go this way,” than to say, “Don’t go that way.” Remember that one element of knack is having empathy for the person, to walk a mile in his or her shoes. When we do that, we realize that we would not want to be talked down to or bossed around if we had dementia.

Use Humor in Communication

Sharing humorous moments is communication at its finest. It involves bonding and an emotional release. Consider telling a funny story to the person. While hearing the story, she laughs, smiles, and has a welcoming posture. Her face is animated. She picks up feelings of happiness and the spirit of fun. Also, laughter is infectious; we tend to laugh at a joke whether we “get it” or not.

Do Most of the Work

Because the disease process has an impact on language, you cannot expect the person to do an equal share of the work in conversations. You must keep working to be an effective communicator. Sometimes this is easy and sometimes it is hard, but even a few words and small efforts may trigger remaining skills. A simple phrase that helps is “Tell me more.” You can also restate what the person has said and fill in some gaps in conversation to keep things flowing.

LET’S PRACTICE COMMUNICATING WITH KNACK

Care partners with the knack for communicating have empathy and patience, focus on the present, use humor, and attempt to lighten up on life even when things are tough. You can get the knack by using the above techniques to avoid common communication dead ends.

Following are some sample situations to demonstrate the knack of communication in action.

Avoid Arguments

A man with Alzheimer’s disease thinks he has a Rotary club meeting today, when in fact he went the day before.

SPOUSE: “Honey, I think you’ve already been to Rotary this week. Let’s check the calendar together. Oh, here it is; you went yesterday. I’ve been all mixed up myself this week since Monday was a holiday.”

It is tempting to want to say to him, “What’s wrong with you? Why don’t you try harder? You know that lunch was yesterday. You’ve already gone. You won’t go again till next week.” However, it’s never a good idea to argue, put someone down, or push him or her to do better. Like the wife in the above story, sometimes it is good to “take the blame” or “fall on the sword.” She didn’t overreact and instead said that she had problems keeping appointments straight as well. They looked at the calendar together, which gently cued him about the correct dates and allayed his concerns. Once again, you can never win an argument with a person with dementia!

Friendly Give and Take

Make Directions Clear

In this example, you can see how an in-home worker encourages his client Lance to enjoy a bowl of soup.

IN-HOME WORKER: [Making eye contact] “Lance, come on. We don’t want the tasty chicken soup to get cold.”

LANCE: “Where?”

IN-HOME WORKER: [Gestures with hands and speaks in pleasant tone] “Sit with me here in the dining room. Here, sit in the brown chair. [Pats hand on dining room chair, smiling broadly] Come on, we don’t want this delicious chicken soup to get cold.”

LANCE: “Soup, that sounds good to me.”

IN-HOME WORKER: [As Lance sits down] “I’m glad you’re here beside me.”

Note that the home worker speaks in short, direct sentences. She calls her client by name, repeats key phrases, and uses gestures and body language effectively. Also, she adds emphasis by mentioning the dining room, the brown chair, and the delicious soup awaiting him.

Cope with a Mother’s Accusations

It can be quite hurtful when a person makes a false accusation. In this case, the son handles it with calmness and skill.

MOTHER: [Angrily] “You took my purse! Where’s my money?”

SON: [Keeps some distance, speaks in a calm voice, looking directly in his mother’s eyes] “Mom, it’s me, Jeff, your son. You are such a teaser. [Smiles] Let me help you. I bet if we look together for a few minutes we’ll find that purse.”

MOTHER: “Jeff, someone took my purse.”

SON: “Mom, tell me about that purse.”

MOTHER: “It’s my purse.”

SON: “I think I remember that you had the red purse out today. Was it the red purse?”

MOTHER: “Yes.”

SON: “Here it is, Mom. You know, I put it in the drawer for safekeeping. I’m very sorry if I upset you. I won’t do it again.”

MOTHER: “Well, okay. Don’t touch it again.”

Jeff handles this challenging situation well by keeping his distance initially and letting his mother vent. He introduces himself and then teases his mother a bit, attempting to provide a small distraction. The son says that he had put the purse away for his mother. He has the knack of taking the blame for his mother, smoothing over a difficult situation and helping her “save face.”

Understanding Seemingly Incomprehensible Words

Sometimes language abilities are profoundly damaged and the person’s words and self-expression don’t make much sense. Here is an example of a sister working hard to make the communication connection with her brother who has dementia.

BROTHER: [Looking agitated] “Um, that’s out. Cold.”

SISTER: [Studies her brother’s face, sees concern] “Greg, is something wrong?”

BROTHER: “It’s cold. Noise. Cold.”

SISTER: “It is cold outside. Let’s look out the door. Will you help me take a look? [Takes Greg by the hand and gently leads him to the sliding glass door] Brrr, it is cold out there! Show me what you see.”

BROTHER: “Linda, there was noise.”

SISTER: “Oh, are you looking at that cat out there? How did Mouser get out? Shall we let him in? He’s looking for a warm lap to sit in. I think he likes you best, Greg. Let’s call him in and go sit by the fire.”

Linda demonstrated effective communication by being patient, treating her brother’s concerns as real, and piecing together the clues to discover that the cat had indeed gotten out in cold weather. By studying Greg’s body language (his face and pacing), she determined that there was a problem and appropriately responded by asking, “Is something wrong?” Perhaps in this case she may also recall that Greg uses the word “noise” when he refers to the cat’s “meow.” Greg’s beloved Mouser is back in the house safe and sound.

Even if there had been no cat at all, Linda’s technique would help Greg feel validated and provide calming reassurance.

Encouraging a Bathroom Stop

Here is a good example of turning a “no” into a “yes.” Bathroom behavior is always a bit delicate to discuss, but this son is both specific and sensitive. He employs good timing by repeating the request until he is successful.

SON: [Leaving a restaurant, softly asks] “Dad, do you have to go to the bathroom to pee?”

FATHER: “No.”

SON: [Whispers to him] “Let’s stop at the bathroom before we go home.”

FATHER: “I’m okay.”

SON: “Okay, let’s leave. [Pats his father on the shoulder, smiling, making a hand gesture toward the front door; as they pass by the men’s bathroom door, he says] Dad, let’s both go in here for a minute. It’s a long way home. I need to go to the bathroom.” [Successfully leads him into the men’s room]

Often people with dementia will automatically say no to something when they do not quite understand what is being asked of them, or in this case, may not know where the bathroom is. The son showed knack by not embarrassing his father or treating him like a child (he whispered his initial request). Rather than argue, he went ahead and gently coaxed his father again, saying “Let’s both go.” He turned a “no” into a “yes” by using finesse.

Dealing with Loss

With dementia, the person may forget that a favorite relative or friend has died. Here is one way to manage that situation.

MOTHER: [Maria, looking for her husband, who died two years ago] “Manuel. Where’s Manuel? Manuel.”

DAUGHTER: “Mom, Dad isn’t here. Come with me. Let’s have a cup of tea and talk about Dad. I remember the time he restored that Ford Mustang in the garage. You got to pick out the cherry red color!”

Maria and her husband were very close, and she still calls for him occasionally. The daughter knows that it is very upsetting when someone reminds her mother of Manuel’s death. Mother forgets being told, but the sadness and distress linger. The daughter does not deny her mother’s feelings and instead invites her to spend time talking about her husband.

Earlier in the disease process, Maria probably could have understood, if reminded, that Manuel had died. Later in the illness, care partners must use their own best judgment about whether telling the truth will be helpful and healing or be confusing and overly upsetting.

CONCLUSION

One son we knew decided that one of the best times to practice communicating as a Best Friend was over mealtimes with his mother. He had moved back into the family home to help his frail elderly father and his mother with dementia. Here are some of the “new family traditions” he instituted with great success. With his mother he:

Heartfelt communication done the Best Friends way supports interactions that can rise above the losses of dementia.

Best Friends Pointers