Communication: The Difficult, Two-Way Street

So much depends on understanding. If caregivers misinterpret signals from the patient and act on those misinterpretations, it can result in excessive frustration for all concerned. For example: a patient asks the same question over and over again. The patient's family might think the patient "isn't trying" to understand - he wants to annoy them, he's lazy, or he could control his behavior if he wanted to. The simple truth is that the patient cannot help himself. Most often, the family gets upset and reacts harshly to the patient, but this only increases the frustrations felt by family and patient alike. It also resolves nothing.

If families are led to understand that loss of memory and other mental functions - symptoms of the disease - are at the root of Alzheimer's disease, they can also be shown that empathy is the key to supportive behavior. In other words, you don't try to reason with them ("You just asked that question and got an answer."). You calm them by being soothing or openly sympathizing with their problems ("It's not important -don't worry about it.").

Of course, you must always bear in mind that Alzheimer's patients often use words in inappropriate or strange ways. An example of the mildest form of this would be the wife who tells her husband she is "worried about a bank account," even though it was one they closed out years earlier. He may misinterpret that as a criticism of his money management and responds angrily - which only escalates her fear and insecurity. The more appropriate response for him is to reassure her that they have sufficient money to live.' She is not questioning his competence or any specific details of the bank account; she is merely expressing her fear that they might not have enough money.

Caregivers must be taught specific problem-solving skills in order to deal with dilemmas brought on by these unpredictable behaviors. Here are just a few suggestions for dealing with problems of communication at each stage of the patient's disease. (There are a number of ways of defining the "stages" of Alzheimer's disease; the descriptions below are not necessarily the best in all cases.)

Early to Early-Middle Stage

The patient may hesitate or delay responses in the course of a conversation. He is struggling to find a word or phrase, but you must give him the time he needs to find it. Help him if he seems frustrated. Do it gently and reassuringly.

The patient may talk in circumlocutions - instead of asking for the butter, he may say "Can I have that stuff you spread on bread?" Since this will be a long-term coping mechanism in the progress of the disease, he should be encouraged to use circumlocutions, rather than being "corrected" with the specific word.

The patient's conversation will be punctuated with digressions, brief and mild at first. Usually at this stage, the patient will bring the conversation around himself to the topic at hand; if not, a gentle reminder is appropriate.

Finally, the patient will very often correct his own communications slips in the early stage. He will try to mask his embarrassment or distress by joking about it, glossing over it, or correcting the mistake quickly and going on. Never challenge him when he tries to hide mistakes!

It is very important in communicating with Alzheimer's patients to maintain eye contact with them throughout the conversation, to speak slowly and simply (without resorting to baby talk!), to try different ways of saying the same thing when comprehension seems particularly difficult, and to respond with warmth and empathy to the patient's expressed feelings.

Middle Stage

The patient's store of factual knowledge is severely reduced. His ability to perform complex daily tasks (shopping, reading, driving) is drastically impaired.

Linguistically, this translates, first, into what is called semantic paraphrasia, or the substitution of a closely related word for the forgotten word. You should work hard to interpret these misnomers within the context of the conversation and your surroundings - these will frequently yield the clues which the patient cannot give you. If you still cannot understand the sense, ask simple, direct questions of the patient, such as offering choices, listing possible words, asking the patient to describe the object or to use gestures to express his meaning.

Patients at this stage also cover up their lack of understanding by using clichés. A patient may say he has "never felt better" to a question about his health, which may not reflect his actual condition at all. It is pointless to make the patient aware of the deception or hypocrisy, but you must guard against being taken in. Ask more questions, or be more specific about your concerns.

Digressions become more frequent, and the patient is no longer able to regain the thread of a conversation by himself. Gently, politely guide him back into the mainstream, in such a way that you do not compromise his self-respect. The patient has begun to experience motor and coordination problems and will probably withdraw socially more and more. He will not initiate conversation very often. These difficulties can be softened by helping the patient remember his skills and abilities through the use of props and mementos. At this stage, the best questions are those that evoke reminiscences, solicit opinions, or inspire happy memories. Through these gambits, you stand the best chance of "breaking into" the shell that seems to be developing around the patient.

The patient will show severe difficulty in understanding simple phrases such as "how are you today?" and may ask you to repeat them several times. Be patient, speak slowly, and enunciate words broadly. Use expressive gestures where possible.

You must also make no assumptions and leave no connections unspoken when you speak to the patient. For example, when you tell him you are going to the store, give him simple, concrete details of what you are going to buy, how long you will be gone, and who will be in the house while you're away.

Likewise, when you instruct the patient to do something, you must be concrete and methodical. Since the patient can now follow only one direction at a time, break tasks and daily routines down into discrete, short steps. An example would be dressing in the morning, which should involve at least six or seven steps. Each piece of clothing needs to become its own task, so that the clothing is put on in the correct order.

At this stage of the patient's illness, when you speak to him you will need to address him by name, avoid all abstractions, communicate simply and in single thoughts, never change the subject abruptly, try to use a basic vocabulary over and over again, provide encouragement and praise, and reinforce your messages or directions as often as possible by writing them down.

Late-Middle Stage

When the illness has progressed to this stage, few of the patient's communication skills are intact. He is able to understand and speak only on the most basic levels. He will need help bathing, dressing, and eating, and he will have great difficulty expressing even the most basic needs. The patient will use general, not precise, words. For example, he might say "food" whenever he wants a particular kind of food, and you must play an elimination game with him to determine exactly what kind of food he wants.

The patient has now lost most of his expressive vocabulary and cannot talk about his thoughts and feelings other than in crude, partial terms. By singing familiar children's songs with him, you may help jog his memory for certain words. At the same time, you help him exercise his vocal cords and swallowing muscles.

Even simple words like "cup," " sink," or "comb" are no longer recognized. You will often have to resort to describing these objects and their functions in order to make yourself understood - e.g., a cup is "the round thing you hold in your hand and juice goes into it and you drink from it."

The patient might withdraw from conversation completely or chatter interminably in this stage of Alzheimer's disease. For either extreme, you may need to ask frequent questions to get him back on track and into a two-way conversation with you.

Some patients at this stage babble the same words or sounds over and over again. It may be impossible to get them to stop. They will lapse in and out of this habit. If it gets too annoying, simply leave the room for awhile and return when the patient has quieted down.

Although the temptation may be great to talk about the patient while he is present, avoid it! We don't know how much a patient at this stage still comprehends, but it is critical not to run the risk of demeaning or otherwise stripping the patient of his dignity.

You must be crystal-clear, simple and direct in your speaking with the patient. Announce your intentions, stick to tried-and-true meaningful words, and pay close attention to his silent language (facial expressions, gestures, body postures, movements) for clues as to what he may want or need.

Late Stage

The patient is now very disoriented in space and time. He probably no longer recognizes family members or close friends. Your most important communicating method at this stage is touch. It reassures, comforts, and communicates affection.

With incontinence and disturbed sleep patterns added to his previous inabilities, the patient is now incapable of doing anything without assistance. And his communication is now minimal - he will babble, talk nonsense, or repeat back what you say to them (echolalia). Even his "yes" and "no" responses to your questions are unreliable and should be tested. If you ask the patient whether he wants to eat, he may say "no" only because he can no longer connect the feeling of hunger with the idea of eating. In some cases, a one- or two-word message written down can help the patient recall that he wants "food" or needs to go to the "bathroom." This technique can be particularly effective in dealing with the patient's basic needs.

Foreign-born patients who learned another language in their early years will frequently revert back to that tongue in this stage. If you know the basic words in that language, you may gain a distinct advantage in communicating with your late stage relative.

Gradually, at the point where you will most likely be calling on hospice care, all of the patient's cognitive functions break down: You cannot make yourself understood at all, and he can no longer express anything meaningful to you. Gesture and mime will be your last, most precious resource. Do a pantomime of what you want the patient to do - and you'll find the results surprisingly good!

These may sound like simple prescriptions, but they are extremely difficult to put into practice. The emotional wear-and-tear to the caregiver may make these "practical" measures seem callous or superfluous, but they are quite literally the only means left of communicating with the patient.

Caregivers must learn to constantly shift their expectations, to scale them back as the disease progresses, and never to forget that the patient is not deliberately being stubborn or mean. These key strategies will make it possible to sustain a fruitful, meaningful relationship with your loved one throughout the course of the disease.