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.”

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.

Should You Tell the Patient?

MANY caregivers wonder if they should tell their loved one that he or she has Alzheimer’s disease (AD). If you decide to do so, how and when should it be done? A newsletter of the South African Alzheimer’s and Related Disorders Association contained these interesting comments from a reader:

“My husband has had Alzheimer’s for about seven years. He is now 81, and his deterioration is thankfully very slow . . . For a long time it seemed to me that it would be cruel to tell him he had Alzheimer’s and so we went along with his own ‘cover-up’ expression: ‘What do you expect of an 80-year-old!’”

The reader then referred to a book that recommended that a patient be told in a kind and simple way about the disease he has. But she held back out of fear that following this advice would devastate her husband.

“Then one day,” she continued, “my husband expressed a fear of making a fool of himself when in the midst of a group of friends. This was my opportunity! So (coming out in a cold sweat) I knelt down beside him and told him he had Alzheimer’s. He, of course, could not grasp what that was, but I explained it is a disease that was making things difficult for him to do [what] he had always found easy, and was also making him forget things. I showed him just two sentences in your brochure Alzheimer’s: We Can’t Ignore It Anymore: ‘Alzheimer’s disease is a disorder of the brain causing loss of memory and serious mental deterioration . . . It is a disease and NOT A NORMAL PART OF AGEING.’ I also assured him that his friends knew he had the disease and therefore understood. He thought this over for a bit, and then exclaimed: ‘What a revelation! It sure helps!’ You can imagine how I felt at seeing what a tremendous relief this knowledge brought him!

“And so, now, whenever he seems to be getting agitated about something, I can put my arms around him and say ‘Remember, it’s not you. It’s that awful Alzheimer’s that’s making things difficult for you,’ and he calms down immediately.”

Of course, each case of AD is different. Also, relationships between caregivers and patients differ. So whether or not you decide to tell your loved one that he or she has AD is a personal matter.

Is It Really Alzheimer’s Disease?

IF AN elderly person experiences acute confusion, do not jump to the conclusion that it is due to Alzheimer’s disease (AD). Many things, such as a bereavement, a sudden move to a new home, or an infection, can cause an elderly person to become disoriented. In many cases acute confusion in older people is reversible.

Even with AD patients, a sudden decline in the person’s condition, such as the onset of incontinence, is not necessarily caused by AD dementia. AD progresses slowly. “A sudden deterioration,” explains the book Alzheimer’s Disease and Other Confusional States, “usually means that an acute condition (such as a chest or urine infection) has occurred. A small group of [AD] sufferers do seem to have a more rapid downwards course . . . For most, however, the decline is quite slow, especially if the person is well cared for and any other medical problems are tackled early and effectively.” Incontinence in an AD patient may be due to some other treatable health problem. “The first step is always to consult the [doctor],” explains the advice sheet Incontinence, produced by the Alzheimer’s Disease Society of London.

What Caregivers Can Do

“I HAVE always been amazed at how different [people] are in their ability to cope,” says Margaret, a medical professional from Australia who has dealt with Alzheimer’s patients and their carers for many years. “Some families are able to manage with the most incredible demands placed on them,” she continues, “while others are rendered almost incapable of dealing with the situation as soon as the person exhibits the slightest change in their personality.”—Quoted in the book When I Grow Too Old to Dream.

What is it that makes the difference? One factor can be the quality of the relationship that existed before the onset of the disease. Families with a close, loving relationship may find it easier to cope. And when a person with Alzheimer’s disease (AD) is well cared for, the disease may be easier to manage.

In spite of declining intellectual abilities, sufferers usually respond to love and tenderness right up to the final stages of the disease. “Words,” points out the advice sheet Communication, produced by the Alzheimer’s Disease Society of London, “are not the only means of communicating.” Nonverbal communication essential to caregivers includes a warm, friendly facial expression and a mild tone of voice. Also important is eye contact as well as clear, steady speech and frequent use of the patient’s name.

“Not only is maintaining communication with your loved one possible,” says Kathy, mentioned in the preceding article, “but it is also important. Warm and affectionate physical contact, a mild tone of voice and, actually, your physical presence all provide security and reassurance for your loved one.” The Alzheimer’s Disease Society of London sums up by saying: “Affection can help you to keep close, particularly when conversation becomes more difficult. Holding the person’s hand, sitting with an arm round them, talking in a soothing voice or giving them a hug are all ways of showing that you still care.”

Where a warm relationship exists, caregiver and patient can often have a good laugh together even when mistakes are made. For example, one husband recalls how his mentally confused wife made the bed but mistakenly put the blanket between the sheets. They discovered the mistake when they went to bed that night. “Oh dear!” she said, “I’ve been silly.” And they both had a good laugh.

Keep Life Simple

AD sufferers function best in familiar surroundings. They also need a regular daily routine. To this end, a large calendar with daily appointments clearly marked on it is very helpful. “Moving someone from their usual environment,” explains Dr. Gerry Bennett, “can have dreadful consequences. Sameness and continuity are very important for the confused person.”

As the disease develops, AD sufferers find it more difficult to respond to instructions. Directions have to be given in a simple, clear way. For example, telling a patient to get dressed may be too complex. The items of clothing may have to be put out in order and the patient helped one step at a time with each item of clothing.

The Need to Keep Active

Some AD sufferers pace about or wander away from their home and get lost. Pacing is a good form of exercise for the patient and may help to reduce tension and improve sleep. However, wandering away from home can be dangerous. The book Alzheimer’s—Caring for Your Loved One, Caring for Yourself explains: “If your loved one wanders away, you are faced with an emergency situation that could easily turn to tragedy. The phrase to remember is don’t panic. . . . Search parties need a description of the person they’re looking for. Have some recent colour photographs at home.”a

On the other hand, some sufferers become lethargic and may just want to sit down all day. Try to get them to do something that you can both enjoy. Get them to sing, whistle, or play a musical instrument. Some enjoy clapping, moving, or dancing to favorite music. Dr. Carmel Sheridan explains: “The most successful activity for people with A.D. is usually one which incorporates music. Families often comment that long after the meaning of other [things] have been forgotten, their relative still enjoys old familiar songs and melodies.”

“I Wanted to Do It”

A South African wife whose husband was in the final stages of AD enjoyed spending every day with him in the nursing home. However, well-meaning family members criticized her for doing this. Perhaps it seemed to them that she was wasting her time, since her husband didn’t seem to recognize her and never said a word. “Nevertheless,” she explained after his death, “I wanted to sit with him. The nurses were very busy, so when he dirtied himself, I could wash and change him. I enjoyed it—I wanted to do it. Once, he hurt his foot while I was pushing him in a wheelchair. I said, ‘Does it hurt?’ and he answered, ‘Of course!’ Then I realized that he could still feel and talk.”

Even in cases where a good family relationship did not exist before the onset of AD, caregivers have still been able to cope.b Just knowing that they are doing what is right and what is pleasing to God can give them a deep feeling of satisfaction. The Bible says, ‘Show consideration for an old man’ and, “Do not despise your mother just because she has grown old.” (Leviticus 19:32; Proverbs 23:22) Furthermore, Christians are commanded: “If any widow has children or grandchildren, let these learn first to practice godly devotion in their own household and to keep paying a due compensation to their parents and grandparents, for this is acceptable in God’s sight. Certainly if anyone does not provide for those who are his own, and especially for those who are members of his household, he has disowned the faith and is worse than a person without faith.”—1 Timothy 5:4, 8.

With God’s help, many caregivers have been able to do a commendable job in caring for sick relatives, including those who suffer from Alzheimer’s disease.

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Alzheimer’s Disease and Medication

ALTHOUGH about 200 possible treatments for Alzheimer’s disease (AD) are currently being tested, there is not yet a cure for AD. Some drugs reportedly alleviate memory loss for a while in the early stages of AD or slow down the progression of the disease in some patients. Caution is in order, however, because these drugs are not effective in all patients, and some can cause damage. Other medications, however, are sometimes used in treating conditions that often accompany AD, such as depression, anxiety, and sleeplessness. In consultation with the patient’s doctor, each family can weigh the benefits and risks of a treatment before making a decision.

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How Visitors Can Help

BECAUSE of failing intellectual abilities, those who have Alzheimer’s disease (AD) are usually not able to discuss current events in depth. However, talking about the past may be different. Long-term memory may stay relatively intact, especially in the early stages of the illness. Many AD sufferers enjoy reminiscing about their past. So invite them to relate some of their favorite stories, even if you have heard them many times before. You thereby contribute to the patient’s happiness. At the same time, you may be giving the regular caregiver a much needed break. In fact, offering to care for the patient for a period of time, perhaps a whole day, can do much to refresh the regular caregiver.

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Coping With Incontinence

ALTHOUGH incontinence may “seem like the last straw,” says the advice sheet Incontinence, “there are things that can be done either to alleviate the problem itself or to make it less stressful.” Keep in mind that the patient may not be permanently incontinent; he may have simply got confused or been too slow in getting to the toilet. Moreover, the patient may be suffering from a treatable condition that is causing temporary incontinence, so you may need to consult a doctor.

Whatever the cause, incontinence can be much easier to handle if the patient wears outer clothes that are easy to put on and take off as well as specially adapted pants. It will also help if you put protective pads on beds and chairs. Avoid skin irritation and soreness by not having plastic in contact with the patient’s skin. Also, wash the patient well with warm, soapy water, and dry him thoroughly before dressing him. Remove obstacles that might hinder the sufferer from getting quickly and safely to the toilet. It may be helpful to leave a night-light on so that he can find his way. Because the patient may be unsteady at this stage, a conveniently placed grab bar will make a visit to the toilet less daunting for him.

“If you can introduce some humour too,” suggests the Alzheimer’s Disease Society of London, “it may relieve the tension.” How can a caregiver meet these challenges? One experienced caregiver replies: “Patience, gentleness, kindness, and the sort of quiet courtesy which will enable the patient to maintain his dignity at all times, without fear of embarrassment or shame.”

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Should the Patient Be Moved?

SADLY, the deteriorating condition of people with Alzheimer’s disease (AD) may require that they be moved from their own home into a relative’s home or into a nursing home. However, before the decision is made to move a patient from familiar surroundings, some important factors should be considered.

Serious disorientation can result from a move. Dr. Gerry Bennett gives an example of a patient who used to wander about and sometimes get lost. Still, she managed to live on her own. Her family, however, decided that she should move to an apartment closer to them so that they could give better supervision.

“Unfortunately,” explains Dr. Bennett, “she never accepted the new place as home. . . . Sadly she never settled, and indeed was made far more dependent because she no longer could function in her new environment. The kitchen was strange, and she could not remember the new way to the toilet and became incontinent. From the best motives came a personal disaster and the eventual outcome was institutional care.”—Alzheimer’s Disease and Other Confusional States.

However, what if there seems to be no alternative but to move the patient into a health-care facility? This certainly is not an easy decision. In fact, it is described as “one of the most guilt-producing” decisions facing caregivers, often making them feel that they have failed and have abandoned their loved one.

“This is a normal reaction,” says one nurse with extensive experience in treating AD patients, “but an unnecessary sense of guilt.” Why? “Because,” she replies, “[the patient’s] care and safety would be the most important consideration.” Doctors Oliver and Bock agree: “The decision that one’s own emotional resources have been exhausted and that the disease has progressed beyond the point of home care is probably the hardest one to make.” Nevertheless, after weighing all the factors in their particular situation, some caregivers may well conclude that “nursing-home placement is . . . in the best interest of the patient.”—Coping With Alzheimer’s: A Caregiver’s Emotional Survival Guide.