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Communicating
 
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How Alzheimer's Affects Communication

People with Alzheimer's disease often find it difficult to express themselves and understand others. The way that Alzheimer's affects communication will vary with each person. As the disease progressively impairs cognitive function, the person with dementia will increasingly have trouble communicating verbally and understanding what has been said.

Those who interact with the person may recognize some of the following changes:

  • Difficulty finding the right words
  • Repeating the same words or phrases again and again
  • Substituting words that sound similar
  • Inventing new words to describe familiar objects
  • Easily losing train of thought
  • Difficulty organizing words logically
  • Reverting to speaking in a native language
  • Using curse words (a strange quirk of diseases that sap language skills)
  • Speaking less often, or even not at all
  • Relying more on nonverbal gestures to compensate
  • Trouble understanding conversation, questions and instructions

The following sections offer tips for connecting with Alzheimer's patients whose neurodegenerative brain disease makes communication a constant struggle for them and a crucial challenge for caregivers.

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Tips for Communication with People Who Have Alzheimer's

Communicating with an Alzheimer's patient requires major adjustments. This section provides family caregivers with tips for helping the cognitively impaired continue to connect even as the disease progressively erodes the ability to think and communicate.

Click here to view: Article on Avoiding Arguments with Alzheimer's Patients

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General Guidelines for Enhancing Communication

Treat the person with dignity and respect.

Appreciate and acknowledge the Alzheimer's patient as a person through words and touch. Do everything you can to relate to the cognitively impaired individual as a valued human being with emotional and spiritual needs. Speak to the person as an adult, because people with dementia can usually tell when they're being treated like children. Even though you should use short words and sentences, never talk down to them. Never patronize or condescend. Never ignore or boss them around. The golden rule: convey to the person the same love, respect, dignity and sincerity that you want others to treat you with. Focus on the person, not the disease; don't let the person become the disease.

Focus on feelings, not facts.

The emotions being expressed are often more important than what is being said. Look for the feelings behind the words. At times, tone of voice and body language may help you understand how the person is really feeling. If you sense the person is anxious about something, it's best to offer comfort and reassurance rather than respond to the specifics of what the cognitively impaired individual is trying to say. Long after an Alzheimer's patient stops "making sense" or loses the ability to express feelings, it's important to keep in mind that there is still a person inside who experiences a full range of emotions (including joy, sadness, fear, pain, embarrassment, anger, jealousy and loneliness).

Offer comfort and reassurance through touch.

Use touch — along with eye contact, smiling, talking and body language — to comfort and reassure the person. Express affection through hugging, holding hands and putting your arms around your loved one. Because the sense of touch stands more chance of reaching an Alzheimer's brain than language, a simple hug or caress can vividly communicate that you are interested and really care. And since lack of touching is often interpreted as personal and social rejection, this means of connection helps reduce the patient's feelings of confusion and insecurity. The more advanced the disease, the more crucial this tip: What you convey emotionally means more than what you convey verbally.

Use a gentle tone to convey a calm and pleasant manner.

The tone of your voice and facial expressions are as important as what you say. In fact, the nature of Alzheimer's makes your tone of voice even more important than the content of your words. Speaking slowly and distinctly, project a relaxed, easygoing and friendly tone. Don't shout! Don't argue! Don't raise your voice! If you talk in a sharp tone, the person is likely to respond in a similar manner. A lower pitch is more calming. Be aware of your feelings and attitude, for they're often communicated unintentionally through tone of voice.

Be supportive and encouraging.

Carefully choosing simple adult words, accentuate positive feelings. If people with dementia are having difficulty expressing themselves, for example, let them know it's all right and encourage them to continue to explain their thoughts. And if they say something that is wrong or you don't agree with, reassure them rather than correct them, criticize them or reason with them. Be optimistic. Convey positive emotions, don't let your sadness over your loved one's memory loss and cognitive decline prevent you from focusing on who the person is. Just as people with Alzheimer's "live in the moment," so must family caregivers develop relationships with them in that shared moment.

Be patient and understanding.

Never rush persons with Alzheimer's. Give them time to think about and describe what they want and need. Give them time to process and absorb what you are telling them or asking them. Let them know that you are listening and trying to understand. Maintain eye contact, and show them that you care about what they are saying, thinking and feeling. No matter how advanced the disease, never presume what a cognitively impaired person may or may not be capable of understanding through the late stages of Alzheimer's.

Never treat people with dementia as if they're not there.

They're often hurt and humiliated when caregivers talk about them as if they are nonexistent or make comments about their behavior. So never say things like "She's giving us a lot of trouble," "Yesterday was a bad time for him," "She kept me up all night." Instead, assume they understand everything you are saying and everything going on around them, even when they appear to be unresponsive. Though it's easy to rationalize that it doesn't matter because they may not understand some of it and will quickly forget all of it, the feeling of being treated as if they're not there will linger. To avoid this common mistake by family and professional caregivers alike, stay mindful of how it feels.

Use nonverbal communication, starting with eye contact.

Since cognitively impaired individuals can remain sensitive to nonverbal messages even when they have difficulty understanding words, compensate for language deficits with eye contact, facial expressions and body language. Use pointing, gesturing and touching to get your messages across, and encourage people with dementia to likewise compensate with such nonverbal communication. As they become less and less verbal through the progression of Alzheimer's, touch and body language will become more and more important.

Be sensitive to the person's body language.

If people with dementia do not want to talk to you, they may avoid eye contact, fold their arms, fidget. If they wish to communicate, they will often smile, appear to be relaxed, lean closer to you, touch you. If possible, wait until the person seems more relaxed and focused before trying to communicate. Be sensitive to times of the day when the person may be more rested, or may be more tired such as at night when "sundowning" intensifies dementia symptoms of confusion and disorientation.

Limit distracting noises or activities.

People with dementia cannot concentrate or sort things out when there are environmental distractions such as other conversations, equipment noises or people walking by. As they lose cognitive ability, their sensitivity to their surroundings and the undercurrents of conversation become heightened, making it harder for them to focus on their thoughts. If they're disturbed or distracted by ambient sounds or hectic activity, find a quieter atmosphere in which to talk without interruption. Moreover, try to relate to the person one-on-one, because group conversations can be confusing and distracting to the cognitively impaired. Always be aware of the emotional climate in the room.

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Specific TIps for Helping Alzheimer's Patients Express Themselves

Listen patiently.

To help people with dementia communicate and alleviate their frustration in trying to make themselves understood, you must first and foremost be a good listener. Give them time to think about and describe what they want. Be careful not to interrupt. Be understanding. Listen with interest and head nods. Say things to validate that you are listening. It's important to validate not so much what they're saying, but that you care to listen and are interested.

Avoid criticizing or correcting.

Normally, if people say something outlandish, you correct them, or if they say something you don't agree with, you reason with them, but these "normal" ways of interacting don't work when communicating with a cognitively impaired individual. As the person loses their capacity for understanding , don't try to reason with them. Don't tell people with dementia that what they're saying is incorrect. Rather, listen and try to find meaning in what is being said. Repeat what was said if clarification is needed. Instead of correcting, be reassuring or noncommittal, then try distracting or redirecting the person. Like patience, flexibility is a caregiving virtue.

Don't argue.

If the person says something you don't agree with, let it be, or try changing the subject. Arguing often only makes things worse. Initiating or joining an argument will upset the person and likely precipitate what is clinically known as a "catastrophic reaction" in which the individual becomes disproportionately agitated. Keep in mind that the person is being moved beyond reason by the disease, not any conscious behavior to be argumentative or annoying. Instead of arguing, try agreeing or validating and then distracting or redirecting.

Click here to read the Article on Avoiding Arguments with Alzheimer's Patients , titled "You Can't Win an Argument with Alzheimer's Patients, But You Can Redirect Them."

Try to redirect the person.

That is, change the subject. Instead of arguing, agree first and then try to change the subject. The more pronounced the short-term memory loss, the easier it will be to handle tough questions and sticky situations by changing the focus or changing the subject. If the patient wants to go out right now, you might say, "Let's go out when we have finished folding the laundry." By the time you are done, chances are that the original request will have been forgotten. Try distracting the person with pleasant diversions, such as food, music or TV. .

Encourage the person to continue expressing thoughts.

Even if they are having difficulty making themselves understood, encourage people with dementia to continue to express themselves. Repeat the last few words of what has been said when they lose their train of thought. Reassure them by using expressions such as "Everything will be OK," "Don't worry," "We're doing great." Give praise for the simplest achievements and successes by making supportive comments like "That's great," "You're doing really well," "Oh, you did such a good job with that."

Offer a guess.

If people with dementia use the wrong word or cannot find a word, try helping them out. If you understand what they mean, it may not be necessary to provide the correct word. In either case, be careful not to cause unnecessary frustration. Be sensitive to how each individual reacts to your help. As a rule of thumb, offer assistance as needed.

Don't quiz in a confrontational way.

Avoid asking questions that may cause frustration because of the person's inability to answer or retrieve something from memory. Don't ask, "What did you do today?" Instead, shape the question to address current feelings: "Are you having a good day?" Avoid rhetorical questions like "You know what that is, don't you?" While some reminiscing can be healthy, never begin questions with the phrase "Do you remember..." Don't challenge memory by asking the person to name favorite foods, music and TV shows, or by asking what was for lunch (instead ask "How was lunch?"). It is however, important to help memory retrieval. You might say something like, "Let's name the foods we can eat."

Watch the patient's eyes for nonverbal expression.

The eyes can tell a great deal about whether the person is experiencing pain, fear or anger. This is yet another reason why eye contact is so important in connecting with the individual. It is very helpful to keep your eyes on the eyes of the patient. The more advanced the disease, the more significant the nonverbal communication through their eyes, facial expressions and body language. To help them compensate for language deficits, encourage nonverbal expression. If you don't understand what they are trying to say, ask persons with dementia to point, gesture or touch.

Acknowledge emotions and encourage the person to discuss feelings.

You can make comments like "You seem angry, "This must be really frustrating for you," however don't directly tell people how they are feeling. You can also encourage the person to talk about difficult and emotional subjects such as dying. Don't reject or dismiss feelings with comments like "Oh, you don't need to worry about that," or "That's not going to happen." Never dismiss the person's fears, concerns and worries. Always acknowledge the person's feelings, using words, tone and touch. Even though people with Alzheimer's may have trouble finding the words to express the meanings in their heads, keep in mind that their feelings matter and remain intact.

Don't dismiss seemingly nonsensical statements.

Even though people with Alzheimer's have difficulty communicating, it does not necessarily mean that they don't know what they want to say. As dementia increases, some may repeat phrases or series of rhyming words that appear to have no meaning (such as "who-who who-who"), but be aware that these types of nonsensical and incoherent mutterings may have meaning to the patient. Some persons with dementia may understand you but be unable to say the correct words to answer. Sometimes they cannot communicate a whole thought but can express a few words of it. Try to listen for key words, which might reveal the true message the person is trying to get across.

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Specific TIps for Helping Alzheimer's Patients Understand Others

Don't express your exasperation with a patient's inability to understand.

As the disease progresses, questions and instructions will increasingly lose their meaning to cognitively impaired people. Even if they still understand individual words or phrases, statements and questions may no longer have any meaning. It's not uncommon for people with memory loss to forget the first part of an explanation by the time you finish it. As a result, family members and caregivers may often misinterpret the actions as uncooperative or inattentive behavior. It's important to keep in mind that real deterioration of brain tissue is the cause of apparently irrational behavior, and that people with Alzheimer's are not behaving this way to annoy or irritate.

Start conversations with orienting information.

Identify yourself, and address the person by name. (Note that general names like "Grandpa" may have no meaning whereas the person's first name will often bring recognition.) This tip becomes even more important at night when Alzheimer's patients often become more confused and disoriented. To establish an atmosphere conducive for communicating, approach calmly from the front, make eye contact, smile and use touch. Make a connection by gaining the person's attention, and hold it by maintaining eye contact. Avoid startling the person by approaching quickly or from behind. Avoid appearing hurried or making any sudden movements which might be distracting.

Speak slowly and clearly, using short words in simple sentences.

Choose familiar words and use them carefully. Avoid complex sentences such as this: "Hello, how are you? It's time for your bath now." Instead, it would be better to simply say, "Time for a bath." Moreover, avoid using pronouns: Instead of saying, "Here it is," try saying, "Here is your hat. " Similarly, avoid using the third person: Identify people by their proper names rather than "he" or "she." In addition, try emphasizing key words: Stress words that are most important such as the subject of the sentence "Here is your coffee. " Finally, always try making negatives more positive: Instead of saying, "Don't go there," try saying, "Let's go here." And avoid controlling statements like "Stop that" or "Not now."

Break down tasks into simple steps and give clear instructions.

Give simple one-step directions, and give just one message at a time. The person with Alzheimer's can become confused by a long string of messages such as this: "Good morning. Let's get dressed and come down and eat our breakfast." Instead, divide the task into parts such as these: "Good morning. You need to get up now."... "OK, you're up. Now let's get dressed." ... "Now that you're dressed, we'll go downstairs." ... "It's time to eat breakfast."

Provide suggestions and structure.

Avoid asking, "Do you want to take a bath?" Instead say, "Time for a bath now." Avoid asking open-ended questions such as "What would you like to do now?" Instead, offer a suggestion such as "Would you like to take a walk now?" Try providing the solution, rather than the question. Turn questions into answers by saying, "The bathroom is right here," rather than asking, "Do you need to use the bathroom?" Also try making comments rather than asking questions: A simple observation can be a conversation-starter without putting the person on the spot. So avoid asking, "Is that a new haircut?" Instead, a comment like "Your hair looks great" could elicit anything from a smile to a conversation.

Prepare the person for what's about to happen.

Always inform people with dementia of what you're preparing to do, even if they seem to be unresponsive. Instead of pulling the person out of a chair, say something like "It's time to get up now." Only then should you begin to gently assist the person to get out of the chair. Then continue to give one-step preparations before each task (walking across the room, assisting the person to sit in a wheelchair, wheeling the chair to the kitchen, etc.).

Ask uncomplicated questions, one at a time, and listen for a response.

Don't confuse or overwhelm cognitively impaired individuals with too many questions at once. Be aware that they may need a lot of extra time to absorb information and process questions. Give them the time and encouragement they need to concentrate and respond. If they don't respond, wait a moment and repeat the question in the exact same words and same phrasing. If that still doesn't work, you might want to ask for feedback or try getting your message across a different way.

Try again later.

If persons with dementia are unresponsive, or if they look like they're not paying attention, wait and try to communicate again a few moments or minutes later when they may be more focused, more rested and less restless. If necessary, wait longer; go away and come back later for another try. Be sensitive to "windows" when an Alzheimer's brain may be more receptive to communication, and to times of the day when the person is less responsive especially when "sundowning" at night.

Limit choices.

Too many choices can be confusing, if not overwhelming. Don't offer choices if there are none. Always keep it simple. Similarly, give simple explanations. Avoid using logic and reason at great length. Provide thorough responses in a clear, concise way. Don't overwhelm the person with lengthy requests or stories. Speak concisely and keep it to the point.

Don't assume a person with dementia is oriented to time of day.

Because the cognitively impaired probably can't tell time, avoid saying, "John will be here at two o'clock." Instead say, "John will be here after your bath." Similarly, don't say, "Jane will visit in an hour." It would be clearer to say, "Jane will visit after lunch." By extension, this tip also applies to dates, days of the week, months, years.

Keep answering repetitive questions over and over.

If people with dementia keep asking the same question again and again, answer it as if it's as new to you as it is to them. Don't tell them that they already asked you the same question, and don't betray any exasperation. This tip also applies when they repeat the same story again and again. Remain interested and receptive each time, though you might try redirecting the conversation without letting on that you've heard it before. Keep in mind that such repetition stems from Alzheimer's symptoms of short-term memory loss.

Use nonverbal communication, from gesturing to writing.

Give visual cues and gestures to explain statements. Demonstrate your request by pointing, touching or beginning the task for the person. Be aware of your body language. Even though you might use kind and gentle words, the person with Alzheimer's disease will pick up tension in your face and your body language. Furthermore, you might want to write things down because a simple note can help compensate for short-term memory loss. Try using written explanations for reminders or when verbal messages seem too confusing. In general, bear in mind that the patient's sensitivity to nonverbal expression and emotions actually might be heightened to make up for language deficits.

Be aware that a variety of medical conditions and medications can also affect an older person's ability to communicate, especially one with Alzheimer's. Be sure to check with a physician when you notice significant changes.

Sources: the Alzheimer's Disease and Related Disorders Association website ( www.alz.org ) and Action Series brochure "Steps to Enhancing Communication"; the National Capital Area Chapter of the Alzheimer's Association website ( www.alz-nca.org ); Lin Noyes, Director of the Family Respite Center in Falls Church, Va.; Claudia J. Strauss's book Talking to Alzheimer's: Simple Ways to Connect When You Visit with a Family Member or Friend (2001, New Harbinger Publications, Inc.).

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Telling Alzheimer's Patients and Family about the Diagnosis

It is extremely distressing when you learn that a member of your family has Alzheimer's disease. Moreover, as you assume the role of caregiver, you may feel hesitant to reveal the diagnosis to the rest of the family, to friends and, most importantly, perhaps to the person with the disease, for fear their reactions will be difficult to manage. Below are some guidelines to help you discuss the disease with others.

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Should I tell the Person with Alzheimer's?

In deciding whether or not to tell the person about the diagnosis, respect the patient's right to know what's wrong, but also be sensitive to your loved one's feelings and emotional state, medical condition and ability to remember, reason and make decisions.Keep in mind that the person with Alzheimer's may suspect something is wrong long before a doctor reaches a diagnosis. If you fail to give any explanation, the person may assume the worst. On the other hand, if you discuss the problem openly, the person may feel relieved to learn that the symptoms are caused by a physical illness rather than a psychological condition. Also, the informed person may be able to participate in important medical, legal, financial and personal planning, depending on the progression of the disease symptoms.

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Tips for informing the Alzheimer's Patient

Rely on professional experience.

You may want to inform the person about the diagnosis through a "family conference" with the patient, other caregivers and a professional such as a social worker or physician who has experience working with cognitively impaired individuals.

Be sensitive to the person's reaction.

The cognitively impaired individual may not be able to understand all that the diagnosis means, or may deny your explanation. If this is the case, it's probably best to accept the person's reactions and avoid further detailed explanations of the disease.

Reassure the person.

Let your loved one know that you'll provide ongoing help and support, and do all you can to make your lives together fulfilling.

Provide the person with follow-up information when you sense the time is right.

Your loved one may benefit from an explanation of the symptoms and the need for continued care. You might say, "Mom, because of your memory and other problems, you may need to let people help you more than you have in the past."

Use the euphemism "memory loss" for the disease if you feel the term "Alzheimer's disease" will upset the person.

This tip also applies if the disease has progressed to the stage where the cognitively impaired individual quickly forgets the "Alzheimer's" diagnosis and would repeatedly become upset each time it is revealed anew. In either case, you might want to confer with your loved one's doctors (neurologist, family physician, geriatric psychiatrist) for opinions on how disclosing the "Alzheimer's" diagnosis may affect quality of life both medically and emotionally.

Treat the person as an adult and don't downplay the disease.

As Alzheimer's progresses, remain open to the patient's need to talk about the disease. The person may ask you about such activities as working, driving or managing finances. Or the person may want to express such feelings as anger, frustration and disappointment. Be aware of nonverbal signs of sadness, anger or anxiety, and respond with love and reassurance.

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Tips for informing Family and Friends

Provide others with adequate information on Alzheimer's disease.
The more that family and friends learn about the disease, the more comfortable they may feel around the person. Explain that Alzheimer's is a medical condition and not a psychological or emotional disorder or a contagious virus. Enlighten them with a description of common symptoms. Refer them to the About Alzheimer's section on this website, as well as the Day to Day Care and Caregiving Challenges sections. Also, consider encouraging family members to come to the New York City Chapter of the Alzheimer's Association for an Orientation Meeting or Educational Meeting .

Be honest about the person's condition.

You'll probably feel relieved after discussing the disease with other family members and close friends

Ask for family support.

Have several tasks in mind for people who say, "Please let me know if there's anything I can do to help you.

Ask people to come for short visits.

Schedule visits for times of the day when the person with dementia is usually most focused and rested. Keep in mind that the person may become anxious if too many people visit at one time, so it's wise to suggest that they call you before stopping by. Recommend specific activities when they visit, such as playing a simple game, taking a walk or looking through a book of photographs with the person.

Embrace the role of children and teenagers in the life of your family member with Alzheimer's.

Young children are often able to relate to a person who has limited verbal ability. Teenagers and young adults feel valued if they're offered an opportunity to spend time with the loved one or share some of your responsibilities.

Include yourself in the conversation.

Explain how the responsibility of caregiving has affected your life or may change your life in the future so that others will have a better sense of how they can help.

Inform your neighbors about the person's condition.

Your neighbors will appreciate knowing the truth about the person's condition, even if you've never socialized with them. More importantly, they will know to alert you if they see your family member wandering around the neighborhood or acting strangely.

Source: the Alzheimer's Disease and Related Disorders Association.

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Handling Tough Questions From Persons with Dementia

The more advanced the disease, the more important it is for you to accept that people with Alzheimer's have a different and changing sense of reality. As author Claudia J. Strauss writes in her book Talking to Alzheimer's: Don't deny their reality.

"If they think their parents are still alive, that their children are still small and have to be picked up from school, or that they are going back to work tomorrow, trying to persuade them of the year, their age, and their losses would be denying their reality," Strauss writes. "Don't argue the point with them. It's not a matter of their being right or wrong. Rather, it's a matter of their believing they are in a different place and in a different time. Insisting on something else will only confuse and upset them; it won't change their perception of time and space. And if it does, it will only be momentary; they will eventually come back to their own reality. Therefore, it's much kinder (and more respectful) to listen, show you are listening, and make either sympathetic or noncommittal comments as appropriate."

"Even if your loved ones understand everything you are saying on a mental level — and many times they won't — they are unlikely to remember it, so there's no point in putting them through it," Strauss adds. "But if you decide to put them right on something, and they get upset and cling to their reality, then back off. Provide reassurance." Strauss emphasizes that "it isn't necessary to lie." To the contrary, she advocates supporting their reality through techniques such as remaining reassuring; listening without comment or changing the subject.

Here are Strauss's tips for handling some of the most common of uncomfortable questions from people with dementia:

"Can you take me to my parents?"

"In most cases, people who have reached the age to suffer from Alzheimer's or a related disease no longer have parents who are living," Strauss writes. "What good would it do to tell them their parents have died and make them suffer the shock of grief and loss all over again?" Instead, the author suggests trying to steer the conversation to their parents (by saying things like "Tell me about your parents?") or to practical considerations such as the difficulty of traveling in the dark or in bad weather.

"Who are you?" or "Do I know you?"

"If a relative or someone you have known a long time asks you this, tell the truth," Strauss writes. "Just give your name. Say, "I'd like to visit, if it's a good time for you?" This puts the emphasis on spending time together, and also puts control of the visit in the other person's hands. You don't want them to dwell on not being able to recognize someone, which is painful and embarrassing."

"Why can't I remember anything?"

"Don't dismiss it," Strauss writes. "Acknowledge it. Say, ‘It's scary, isn't it?' Give them a chance to talk about it. Commiserate with them. Try to gauge whether it is helping them to vent or getting them more upset. ... If it seems to be upsetting them more than helping them, take control of the conversation. Be reassuring. Then change the subject or suggest doing something else or going somewhere else."

Source: Claudia J. Strauss's book Talking to Alzheimer's: Simple Ways to Connect When You Visit with a Family Member or Friend (2001, New Harbinger Publications, Inc.), www.newharbinger.com .

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