The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss (A Johns Hopkins Press Health Book)

by Nancy L. Mace

Swimming pools are very dangerous. Be sure that your or your neighbor’s pool is securely fenced and locked so that the person who has dementia cannot get to it. You may have to explain carefully the nature of the person’s impairment to the owner of the pool, making certain that the person is not ever assumed to be competent around a pool. Even if he has always been a good swimmer, a person who has dementia may lose his judgment or his ability to handle himself in the water.

Never leave a person who has dementia alone in a car. He may wander away, fiddle with the ignition, release the handbrake, be harassed by strangers, or run the battery down by keeping the lights on. Some automatic windows are dangerous for people who have dementia and for children, who may close the window on their head or an arm. Engage the automatic window locks so that only the driver can control them.

Occasionally a person will open the car door and attempt to get out while the car is moving. Locking the doors may help. Most cars have child safety locks on the rear doors. This will keep a person from getting out of the backseat until the driver unlocks the doors. If getting out of a moving car is a potential problem, you may need a third person to drive while you keep the person who has dementia calm.

If you spoon-feed a person, put only a small amount of food on the spoon at a time; wait until the person swallows before giving him the next bite. Late in the disease you might have to remind him to swallow.

People who have dementia may develop rigid likes and dislikes and refuse to eat certain foods. Such people may be more willing to eat familiar foods, prepared in familiar ways. If the person never liked a particular food, he will not like it now. New foods may confuse him. If the person insists on eating only one or two things, and if all efforts at persuasion or disguising foods fail, you will need to ask the doctor about vitamins and diet supplements.

People who have dementia can easily become malnourished, even when their caregivers are doing the best they can. Malnutrition and dehydration contribute to the person’s overall poor health, increase his suffering, and shorten his life. Malnutrition affects the way the entire body functions, including how quickly a person recovers from an illness and how quickly a wound heals. It is possible to be overweight and still not be getting needed protein, minerals, or vitamins. People who have difficulty swallowing or who have had a stroke are especially at risk of malnutrition.

People who have dementia lose weight for all the same reasons that other people do. Therefore, if someone is losing weight and is not on a diet, the first step is to consult his physician. Weight loss often indicates a treatable problem or a disease unrelated to the dementia. Do not assume that it signals a decline. It is important that the physician search carefully for any contributory illness. Is the person constipated? Has the person had a new small stroke? Is the person depressed? Depression can account for weight loss even in a person who has dementia. Poorly fitting dentures

and sore teeth or gums can contribute to weight loss. Weight loss very late in the illness may be a part of the disease process itself. Certainly all other possible causes should be considered.

You may give a person who is not eating well a liquid high-calorie diet supplement like Ensure or Sustacal. You can purchase these by the case from most pharmacies and discount warehouses. They contain vitamins, minerals, calories, and proteins the person needs.

Recreation, having fun, and enjoying life are important for everyone. An illness that causes dementia does not mean an end to enjoying life. It may mean that you will need to make a special effort to find things that give pleasure to the affected person. As the person’s illness progresses, it may become more difficult to find things he can still enjoy. In reality, you may already be doing as much as you can; adding an “activity” program may further exhaust you and add to the stress in the household. Instead, look for things you can still do that both of you will enjoy.

Touch can be an effective way of communicating long after the person can no longer understand what is being said

Pushing a person to do something that upsets him is not helpful

Be calm and gentle when you help with a bath. Avoid getting into discussions about whether a bath is needed. Instead, tell the person one step at a time what to do in preparation for the bath. Avoid: “Dad, I want you to take a bath right after breakfast.” (“Right after breakfast” means he has to remember something.) Avoid responding to “I don’t need a bath” by saying, “Oh yes you do. You haven’t had a bath in a week.” (You would not like to have him say that to you, especially if you couldn’t remember when you last had a bath.) Try: “Dad, your bath water is ready.” “I don’t need a bath.” “Here is your towel. Now, unbutton your shirt.” (His mind may focus on the buttons instead of on the argument. You can gently help him if you see him having difficulty.) “Now stand up. Undo your pants, Dad.” “I don’t need a bath.” “Now step into the tub.”

Never leave the person alone in the tub. Use only two or three inches of water. This way the person feels more secure, and it is safer in case he slips. Put a rubber mat or nonskid decals on the bottom of the tub. People can often continue to wash themselves if you gently remind them one step at a time of each area to wash.

Make oral care a part of a regular, expected routine and do it calmly; you will encounter less resistance. Select a time of day when the person is most cooperative. If the person does become upset, stop and try again later.

When a health practitioner is considering starting or raising the dosage of a behavior-modifying drug, ask whether there are nondrug approaches that can be tried first

Store medications where the forgetful person cannot reach them.

Failing to hear properly deprives the brain of information needed to make sense of the environment. Hearing loss can cause or worsen forgetfulness, suspiciousness, and withdrawal (see Chapter 8), so correct any hearing loss if possible.

In addition to correcting hearing loss with a hearing aid, here are some other things you can do: Reduce background noises, such as noise from appliances, the television, or several people talking at once. It is difficult for the person who has dementia to distinguish between these and what she wants to hear. Sit or stand by the person’s “better” ear when speaking to her. Give the person clues to where sounds are coming from. It can be hard to locate and identify sounds, and this may confuse the person. Remind her, “That is the sound of the garbage truck.” Use several kinds of clues at one time: point, speak, and gently guide the person, for example.

If you suspect dizziness, notify the person’s doctor or nurse right away, since the poor balance that it causes increases the risk of a serious fall

Ask for a doctor’s appointment at the person’s best time of day. If the person who has dementia is likely to become upset in the car, take someone else with you who can drive or comfort them.

Plan trips in advance. Know where you are going, where you will park, how long it will take, and whether there are stairs or elevators. Allow enough time without rushing, but not so much time that you will be early and have a longer wait. Ask for a doctor’s appointment at the person’s best time of day. Take someone with you to drive while you comfort the person who has dementia.

We recommend that you hire a sitter to stay with the person in the hospital whenever you or other family members cannot be there

dementia damages the brain. As a result, the person becomes unable to make sense of what he sees and hears. Not being able to make sense of things leads to confusion. This confusion may make the person frightened and anxious. This is why he sometimes insists on “going home,” why he lashes out in anger at you or resists care, why he believes that someone is stealing his money or trying to poison him. Most of these behaviors are not under his control, and he usually is trying as hard as he can. Other symptoms result more directly from the brain damage.

THE SIX R’S OF BEHAVIOR MANAGEMENT Restrict. The first thing we often try is to get the person to stop whatever he is doing. This is especially important when the person might harm himself or someone else. But trying to make the person stop may upset him more. Reassess. Ask yourself these questions: Might a physical illness or drug reaction be causing the behavioral symptom? Might the person be having difficulty seeing or hearing? Is something upsetting him? Could the annoying person or object be removed? Might a different approach upset the person who has dementia less? Reconsider. Ask yourself how things must seem from the point of view of the person who has dementia. Many of the symptoms of dementia, such as memory impairment, the inability to comprehend or express language, the inability to do things that one has done since childhood, and an unawareness of the extent of impairment can lead directly or indirectly to behavioral difficulties. When you try to bathe or dress someone who does not understand that he needs help, he may become upset. He might feel that his privacy is being invaded or that someone is trying to harm him rather than to help him. The resulting anxiety is understandable when he can’t make sense of things that are going on. Rechannel. Look for a way that the behavior can continue in a safe and nondestructive way. The behavior may be important to the person in some way that we cannot understand. One man who had been a mechanic continued to take things...

Distract the person who has wandered rather than confront him

If you think the person is wandering because he is restless, try giving him some active task like dusting, folding clothes, or stacking books. Adult day care that provides both companionship and things to do can be a great help for those who wander.

Changing the environment to protect the person is an important part of coping with wandering. One family found that the person who had dementia would not go outside if he did not have his shoes on. Taking away his shoes and giving him slippers kept him inside.

Some people who have dementia seem to have more behavioral symptoms in the evening. The reasons for this vary from person to person but include afternoon fatigue, afternoon caregiver fatigue, loss of the usual patterns of hormonal secretion that follow a twenty-four-hour cycle, lessened stimulation later in the day, and, least likely, lowered light levels later in the day (the source of the label sundowning). A whole day of trying to cope with confusing perceptions of the environment may be tiring, so a person’s tolerance for stress is lower at the end of the day. You are also more tired and may subtly communicate your fatigue to the person who has dementia, causing catastrophic reactions.

Sometimes people who have dementia take off their clothes or wander out into the living room or down the street undressed. One teenage boy came home to find his father sitting on the back porch reading the newspaper. He was naked except for his hat. Occasionally, people who have dementia will expose themselves in public. Sometimes they will fondle their genitals. Or they will fidget in such a way that their fidgeting reminds others of sexual behaviors. One man repeatedly undid his belt buckle and unzipped his trousers. A woman kept fidgeting with the buttons of her blouse. Sometimes brain damage will cause a person to demand sexual activities frequently or inappropriately. But much more common than actual inappropriate sexual behavior is the myth that old people commonly develop inappropriate sexual behaviors. One wife who brought her husband to the hospital for care confessed that she had no problems managing him but that she had been told that, as he got worse, he would go into his “second childhood” and start exposing himself to little girls. There is no basis to this myth. Inappropriate sexual behaviors in people with illnesses that cause dementia are uncommon. In a study of our patients with dementia, instances of such behavior were very uncommon.

Most people who have dementia do not engage in inappropriate sexual behavior. If such behavior occurs, handle it matter-of-factly. It is a result of the brain injury

Families tell us that people who have dementia sometimes follow the caregiver from room to room, becoming fretful if the caregiver disappears into the bathroom or the basement. Or the person who has dementia may constantly interrupt whenever the caregiver tries to rest or get a job done. Few things can irritate one more than being followed around all the time. This behavior can be understood when we consider how strange the world must seem to a person who constantly forgets. The trusted caregiver becomes the only security in a world of confusion. When a person cannot depend on himself to remember the necessary things in life, one form of security is to stick close to someone who does know.

Setting a timer and telling the person “I will be back when the timer goes off” may help

A wife contributed the following interpretations of the things her husband often said. Of course, we cannot know what a person who has dementia feels or means, but this wife has found loving ways to interpret and accept the painful things her husband says. He says: “I want to go home.” He means: “I want to go back to the condition of life, the quality of life, when everything seemed to have a purpose and I was useful, when I could see the products of my hands, and when I was without the fear of small things.” He says: “I don’t want to die.” He means: “I am sick, although I feel no pain. Nobody realizes just how sick I am. I feel this way all of the time, so I must be going to die. I am afraid of dying.” Try not to reason with a person who is complaining. Instead, use distraction, or respond sympathetically by acknowledging the feelings behind the complaint. He says: “I have no money.” He means: “I used to carry a wallet with some money in it. It is not in my back pants pocket now. I am angry because I cannot find it. There is something at the store that I want to buy. I’ll have to look some more.” He says: “Where is everyone?” He means: “I see people around me, but I don’t know who they are. These unfamiliar faces do not belong to my family. Where is my mother? Why has she left me?”

If a person is taking things in stores, he may be doing so because he has forgotten to pay for them or because he does not realize that he is in a store.

Sometimes people who have dementia can be demanding and appear to be self-centered. This is especially hard to accept when the person does not appear to be significantly impaired. If you feel that this is happening, try to step back and objectively evaluate the situation. Is this behavior deliberate, or is it a symptom of the disease? The two can look alike, especially if the person had a way of making people feel manipulated before he developed dementia. However, what is often happening with a person who has dementia is not something he can control.

Families often ask whether they should “spoil” the person by meeting his demands or whether they should try to “teach” him to behave differently. The best course is often neither of these strategies. Because he cannot control his behavior, you are not “spoiling” him, but it may be impossible for you to meet endless demands. Because the person has limited ability, if any, to learn, you cannot teach him, and scolding may precipitate catastrophic reactions.

Families often suspect that a stubborn and uncooperative person who has dementia is deliberately trying to frustrate them. It is hard to know whether a person who has always been stubborn is now more so or whether the stubbornness is because of the dementia. Some people are more uncooperative than others by nature. However, this kind of behavior is usually at least partly caused by the illness.

In all events, consider your own health. Even if a sitter does upset the person who has dementia, it is essential that you get out from time to time if you are to continue to be able to give care

People with memory problems may also be sad, low, or depressed. When a person has memory problems and is depressed, it is important that the correct diagnosis be

made and the depression treated. The memory problems may improve when the depression is treated, whether or not the depression is caused by the dementia.

When a person with an incurable disease is depressed, it can seem logical that she is depressed about the chronic illness. But not all people who have Alzheimer disease or other chronic illnesses are depressed. In fact, m...

People who have dementia may remember their feelings far longer than they remember the situation that caused the feelings.

Try not to interpret anger in the same way as you would if it came from a well person. Anger from a person who has dementia is often exaggerated or misdirected. The person may not really be angry at you at all. The anger could well be the result of misunderstanding what is happening.

Ironically, forgetfulness can be an advantage, because the person may quickly forget the episode. Often you can distract a person who is behaving this way by changing the topic of discussion to something you know she likes.

A person who has dementia may hear, see, feel, or smell things that are not there. Such hallucinations may terrify her (if she sees a strange man in the bedroom) or amuse her (if she sees a puppy on the bed).

If the person is misinterpreting things, avoid directly disagreeing with her, since this may precipitate a catastrophic reaction. Instead, explain what she is seeing or hearing.

If the person who cannot recognize familiar faces can still recognize voices, she may recognize the person when they speak to her

Occasionally a person who has an illness that causes dementia will insist that her spouse is not her spouse or that her home is not her real home. These are forms of agnosia. Reassure the person, “I know I look old but I am your husband,” but avoid

arguing. Although this may seem heartbreaking, it is important for you to reassure yourself that it is not a rejection of you (the person does remember you). It is just an inexplicable misperception by the damaged brain.