Alzheimer's Disease
Easing the Pain

Preserving the Patient's Dignity

TWO days before Sally took her husband to see a neurologist, a new prime minister was elected in South Africa. When the neurologist asked Alfie about the outcome of the elections, he stared blankly and could not answer. Then, after taking a brain scan, the neurologist exclaimed rather insensitively: "This man can hardly add two and two together. His brain has gone!" He then advised Sally: "You must get your finances fixed up. This man can turn on you and get violent."

"Never!" responded Sally, "not my husband!" Sally's objection proved to be correct; Alfie never did become violent with her, even though some who have Alzheimer's disease (AD) do get aggressive. (Often this is because of feelings of frustration, which can sometimes be eased by the way an AD sufferer is handled.) Although the neurologist succeeded in diagnosing Alfie's problem, he was apparently unaware of the need to preserve a sufferer's dignity. Otherwise, he would have kindly explained Alfie's condition to Sally privately.

"The clearest need for those who suffer from one of the dementias is to be able to maintain their dignity, respect and self-esteem," says the book When I Grow Too Old to Dream. An important way to preserve the patient's dignity is explained in the advice sheet Communication, published by the Alzheimer's Disease Society of London: "Never discuss [AD sufferers] in front of other people as if they were not present. Even if they do not comprehend, they may sense that they are excluded in some way and feel humiliated."

The fact is that some AD sufferers do comprehend what others say about them. For example, a patient from Australia went with his wife to an Alzheimer's society meeting. Later he made this comment: "They were instructing carers on what to do and how to do it. I couldn't get over the fact that I was there and nobody was talking about the patient. . . . It is so frustrating. Because I have Alzheimer's, what I say is irrelevant: nobody will listen."

Be Positive

There are many positive ways of helping to preserve sufferers' dignity. They may need help to continue with daily tasks that they once found simple. For example, if they were formerly good correspondents, then perhaps you can sit down and help them reply to letters from concerned friends. In her book Alzheimer's—Caring for Your Loved One, Caring for Yourself, Sharon Fish gives other practical ways of assisting AD sufferers: "Find easy things to do together that are meaningful and productive: washing up and drying dishes, sweeping the floor, folding laundry, cooking dinner." Then she explains: "An Alzheimer's sufferer may not be able to clean the whole house or cook an entire meal, but the loss of these abilities is usually gradual. You can capitalize on the abilities that are still intact and help preserve them for as long as possible. When you do that, you also help preserve your loved one's self-esteem."

Assisting Alzheimer's patients with daily tasks helps to preserve their dignity

Some of the jobs performed by an AD sufferer will not be up to standard, so you may have to sweep the floor again or rewash the dishes. Nevertheless, by allowing the sufferer to continue feeling useful, you allow him to get satisfaction out of life. Commend him even if a job is below standard. Remember, he has done his best within his failing capabilities. AD sufferers need constant reassurance and commendation—even more so as they become less and less successful with various activities. "At any moment—quite unpredictably," says Kathy, whose 84-year-old husband has AD, "they can be overcome by feelings of uselessness. The caregiver needs to provide immediate relief by giving warm reassurance that the patient is 'doing all right.'" The book Failure-Free Activities for the Alzheimer's Patient agrees: "We all need to hear that we are doing a good job, and for people with dementia, this need is especially strong."

How to Handle Embarrassing Behavior

Caregivers have to learn how to handle embarrassing behavior on the part of their loved one. One of the worst fears is that a patient will become incontinent in public. "These acts," explains Dr. Gerry Bennett in his book Alzheimer's Disease and Other Confusional States, "do not occur often and can usually be prevented or minimised. A sense of proportion also has to be taken into account, as it is not the act itself or the audience that should cause concern but the loss of dignity for the person."

If such an embarrassing incident occurs, do not berate the sufferer. Instead, try to follow this advice: "Remain calm and matter of fact and remember that the person is not being deliberately aggravating. Moreover, they are more likely to cooperate if you are gentle and firm than if you are irritated and impatient. Do everything you can not to let the problem get in the way of your relationship."—The advice sheet Incontinence, from the Alzheimer's Disease Society of London.

Do They Really Need Correction?

AD sufferers often say things that are incorrect. For example, they may say that they are expecting a visit from a relative who has long been dead. Or they may hallucinate, seeing things that are only in their mind. Is it always necessary to correct an AD sufferer for expressing an inaccurate viewpoint?

"There are parents," explains Robert T. Woods in his book Alzheimer's Disease—Coping With a Living Death, "who cannot stop themselves correcting their children every time they mispronounce a word or make a grammatical error. . . . The result is often a resentful or withdrawn child who finds that efforts at self-expression are stifled, not rewarded. The same may happen to an AD sufferer who is constantly corrected." Interestingly, the Bible advises with regard to the treatment of children: "You fathers, do not be exasperating your children, so that they do not become downhearted." (Colossians 3:21) If children become exasperated through constant correction, how much more will an adult! "Remember that the patient is an adult who has known independence and achievement," cautions the ARDA Newsletter of South Africa. Constant correction may not only exasperate an AD victim but also cause him to become depressed or even aggressive.

A lesson can also be learned from Jesus Christ that will help those dealing with the limitations of AD sufferers. He did not immediately correct every mistaken viewpoint of his disciples. In fact, he sometimes withheld information from them because they were not yet in a position to grasp it. (John 16:12, 13) If Jesus showed consideration for the limitations of healthy humans, how much more should we be willing to adapt to strange, yet harmless, viewpoints of a severely sick adult! Trying to make a sufferer see the truth of a particular matter may be expecting—or demanding—more than he is capable of. Instead of having an argument, why not keep quiet or tactfully change the subject?—Philippians 4:5.

At times, the most loving thing may be to seem to go along with a sufferer's hallucinations instead of trying to convince him that they are not real. For example, an AD sufferer may become disturbed because of "seeing" a wild animal or an imaginary intruder behind the curtain. This is not the time to try to reason logically. Remember that what he "sees" in his mind is real to him, and his genuinely felt fears need to be quelled. You may need to check behind the curtain and then say, "If you 'see' him again, please tell me so that I can help." By acting according to the patient's view, explain Doctors Oliver and Bock in their book Coping With Alzheimer's: A Caregiver's Emotional Survival Guide, you give him "a sense of mastery over the frightful, and frightening, apparitions that his mind conjures up. . . . He knows that he can depend on you."

"We All Stumble Many Times"

Applying all the aforementioned suggestions may be difficult, especially for those who have a heavy work load and other family responsibilities to care for. A frustrated carer may occasionally lose self-control and fail to treat an AD sufferer with dignity. When this happens, it is important not to allow yourself to become overburdened with guilt. Remember, because of the nature of the disease, the sufferer will probably forget the incident very quickly.

Also, the Bible writer James states: "We all stumble many times. If anyone does not stumble in word, this one is a perfect man." (James 3:2) Since no human caregiver is perfect, mistakes can be expected in the difficult task of caring for an AD sufferer. In the next article, we will consider other things that have helped caregivers to cope with—and even enjoy—caring for an AD sufferer.