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The 36-Hour Day A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss
By Nancy L. Mace
Grand Central Life & Style Copyright © 2012 Nancy L. Mace
All right reserved.
For two or three years Mary had known that her memory was slipping. First she had trouble remembering the names of her friends’ children, and one year she completely forgot the strawberry preserves she had put up. She compensated by writing things down. After all, she told herself, she was getting older. But then she would find herself groping for a word she had always known, and she worried that she was getting senile.
Recently, when she was talking with a group of friends, Mary would realize that she had forgotten more than just an occasional name—she lost the thread of the conversation altogether. She compensated for this, too: she always gave an appropriate answer, even if she secretly felt confused. No one noticed, except perhaps her daughter-in-law, who said to her best friend, “I think Mother is slipping.” It worried Mary—sometimes depressed her—but she always denied that anything was wrong. There was no one to whom she could say, “I am losing my mind. It is slipping away as I watch.” Besides, she didn’t want to think about it, didn’t want to think about getting old, and, most important, didn’t want to be treated as if she were senile. She was still enjoying life and was able to manage.
Then in the winter Mary got sick. At first she thought it was only a cold. She saw a doctor, who gave her some pills and asked her what she expected at her age, which annoyed her. She rapidly got much worse. She went to bed, afraid, weak, and very tired. Mary’s daughter-in-law got a telephone call from Mary’s neighbor. Together they found the old woman semiconscious, feverish, and mumbling incoherently.
During the first few days in the hospital, Mary had only an intermittent, foggy notion of what was happening. The doctors told her family that she had pneumonia and that her kidneys were working poorly. All the resources of a modern hospital were mobilized to fight the infection.
Mary was in a strange place, and nothing was familiar. People, all strangers, came and went. They told her where she was, but she forgot. In strange surroundings she could no longer compensate for her forgetfulness, and the delirium caused by the acute illness aggravated her confusion. She thought her husband came to see her—a handsome young man in his war uniform. Then when her son came, she was surprised that they would come together. Her son kept saying, “But Mom, Dad has been dead for twenty years.” But she knew he wasn’t, because he had just been there. Then when she complained to her daughter-in-law that she never came, she thought the woman lied when she said, “But Mother, I was just here this morning.” In truth, she could not remember the morning.
People came and poked and pushed, and shoved things in and out and over her. They stuck her with needles, and they wanted her to blow into their bottles. She did not understand and they could not explain that blowing in the bottles forced her to breathe deeply to strengthen her lungs and improve her circulation. The bottles became part of her nightmare. She could not remember where she was. When she had to go to the bathroom, they put rails on her bed and refused to let her go, so she cried and wet herself.
Gradually, Mary got better. The infection cleared and the dizziness passed. Only during the acute phase of her illness did she imagine things, but after the fever and infection had passed, the confusion and forgetfulness seemed more severe than before. Although the illness had probably not affected the gradual course of her memory loss, it had weakened her considerably and taken her out of the familiar setting in which she had been able to function. Most significantly, the illness had focused attention on the seriousness of her situation. Now her family realized she could no longer live alone.
The people around Mary talked and talked. No doubt they explained their plans, but she forgot. When she was finally released from the hospital, they took her to her daughter-in-law’s house. They were happy about something that day, and they led her into a room. Here at last were some of her things, but not all. She thought perhaps the rest of her things had been stolen while she was sick. They kept saying they had told her where her things were, but she couldn’t remember what they said.
This is where they said she lived now, in her daughter-in-law’s house—except that long ago she had made up her mind that she would never live with her children. She wanted to live at home. At home she could find things. At home she could manage—she believed—as she always had. At home, perhaps, she could discover what had become of a lifetime of possessions. This was not her home: her independence was gone, her things were gone, and Mary felt an enormous sense of loss. Mary could not remember her son’s loving explanation—that she couldn’t manage alone and that bringing her to live in his home was the best arrangement he could work out for her.
Often, Mary was afraid, with a nameless, shapeless fear. Her impaired mind could not put a name or an explanation to her fear. People came, memories came, and then they slipped away. She could not tell what was reality and what was memory of people past. The bathroom was not where it was yesterday. Dressing became an insurmountable ordeal. Her hands forgot how to button buttons. Sashes hung inexplicably about her, and she could not think how to manage them or why they hung there.
Mary gradually lost the ability to make sense out of what her eyes and ears told her. Noises and confusion made her feel panicky. She couldn’t understand, they couldn’t explain, and often panic overwhelmed her. She worried about her things: a chair and the china that had belonged to her mother. They said they had told her over and over, but she could not remember where her things had gone. Perhaps someone had stolen them. She had lost so much. What things she still had, she hid, but then she forgot where she hid them.
“I cannot get her to take a bath,” her daughter-in-law said in despair. “She smells. How can I send her to the adult day care center if she won’t take a bath?” For Mary the bath became an experience of terror. The tub was a mystery. From day to day she could not remember how to manage the water: sometimes it all ran away; sometimes it kept rising and rising, and she could not stop it. The bath involved remembering so many things. It meant remembering how to undress, how to find the bathroom, how to wash. Mary’s fingers had forgotten how to unzip zippers; her feet had forgotten how to step into the tub. There were so many things for an injured mind to think about that panic overwhelmed her.
How do any of us react to trouble? We might try to get away from the situation for a while, and think it out. One person may go out for a beer; another may weed the garden or go for a walk. Sometimes we react with anger. We fight back against those who cause, or at least participate in, our situation. Or we become discouraged for a while, until nature heals us or the trouble goes away.
Mary’s old ways of coping with trouble remained. Often when she felt nervous, she thought of going for a walk. She would pause on the porch, look out, drift out, and walk away—away from the trouble. Yet the trouble remained and now it was worse, for Mary would be lost, nothing would be familiar: the house had disappeared, the street was not the one she knew—or was it one from her childhood, or where they lived when the boys were growing up? The terror would wash over her, clutching at her heart. Mary would walk faster.
Sometimes Mary would react with anger. It was an anger she herself did not understand. But her things were gone; her life seemed gone. The closets of her mind sprang open and fell shut, or vanished altogether. Who would not be angry? Someone had taken her things, the treasures of a lifetime. Was it her daughter-in-law, or her own mother-in-law, or a sister resented in childhood? She accused her daughter-in-law but quickly forgot the suspicion. Her daughter-in-law, coping with an overwhelming situation, was unable to forget.
Many of us remember the day we began high school. We lay awake the night before, afraid of getting lost and not finding the classrooms the next day in a strange building. Every day was like that for Mary. Her family began sending her to an adult day care center. Every day a bus driver came to pick her up in the morning, and every day her daughter-in-law came to get her in the afternoon, but from day to day Mary could not remember that she would be taken home. The rooms were not dependable. Sometimes Mary could not find them. Sometimes she went into the men’s bathroom.
Many of Mary’s social skills remained, so she was able to chat and laugh with the other people in the day care center. As Mary relaxed in the center, she enjoyed the time she spent there with other people, although she could never remember what she did there well enough to tell her daughter-in-law.
Mary loved music; music seemed to be embedded in a part of her mind that she retained long after much else was lost. She loved to sing old, familiar songs. She loved to sing at the day care center. Even though her daughter-in-law could not sing well, Mary did not remember that, and the two women discovered that they enjoyed singing together.
The time finally came when the physical and emotional burden of caring for Mary became too much for her family, and she went to live in a nursing home. After the initial days of confusion and panic passed, Mary felt secure in her small, sunny bedroom. She could not remember the schedule for the day, but the reliability of the routine comforted her. Some days it seemed as if she were still at the day care center; sometimes she was not sure. She was glad the toilet was close by, where she could see it and did not have to remember where it was.
Mary was glad when her family came to visit. Sometimes she remembered their names; more often she did not. She never remembered that they had come last week, so she regularly scolded them for abandoning her. They could never think of much to say, but they put their arms around her frail body, held her hand, and sat silently or sang old songs. She was glad when they didn’t try to remind her of what she had just said or that they had come last week, or ask her if she remembered this person or that one. She liked it best when they just held her and loved her.
Someone in your family has been diagnosed as having dementia. This could be Alzheimer disease, vascular dementia, or one of several other diseases (see Chapter 18). Perhaps you are not sure which condition it is. Whatever the name of the disease, a person close to you has lost some of his intellectual ability—the ability to think and remember. He may become increasingly forgetful. His personality may appear to change, or he may become depressed, moody, or withdrawn.
Many, although not all, of the disorders that cause these symptoms in adults are chronic and irreversible. When a diagnosis of an irreversible dementia is made, the person who has dementia and his family face the task of learning to live with the illness. Whether you decide to care for the person at home or to have him cared for in a nursing home or a residential home, you will find yourself facing new problems and coping with your feelings about having someone close to you develop an incapacitating illness.
This book is designed to help you with that adjustment and with the tasks of day-to-day management of a family member who has dementia. We have found that there are questions many families ask. This material can help you begin to find answers, but it is not a substitute for the help of your doctor and other professionals.
WHAT IS DEMENTIA?
You may have heard different terms for the symptoms of forgetfulness and loss of the ability to reason and think clearly. You may have been told that the person has “dementia” or “Alzheimer’s.” You may also have heard the terms “organic brain syndrome,” “hardening of the arteries,” or “chronic brain syndrome.” You may have wondered how these conditions are different from “senility.”
Doctors use the word dementia in a special way. Dementia does not mean crazy. It has been chosen by the medical profession as the least offensive and most accurate term to describe this group of illnesses. Dementia describes a group of symptoms and is not the name of a disease or diseases that cause the symptoms. Neurocognitive disorder is a newer term that some clinicians and researchers use instead of dementia. It has the same meaning as dementia.
There are two major conditions that result in the symptoms of mental confusion, memory loss, disorientation, intellectual impairment, or similar problems. These two conditions may look similar to the casual observer and can be confused with each other. The first is dementia. The second condition, delirium, is discussed on page 540. Delirium is important to you because occasionally a treatable delirium will be mistaken for a dementia. Sometimes people who have Alzheimer disease or another dementia develop a delirium as well and have symptoms that are worse than the dementia alone would cause.
The symptoms of dementia can be caused by many different diseases. Some of these diseases are treatable; others are not. Thyroid disease, for example, may cause a dementia that can be reversed with correction of a thyroid abnormality. In Chapter 18, we summarize some of the diseases that can cause dementia.
Alzheimer disease is the most frequent cause of irreversible dementia in adults. The intellectual impairment progresses gradually from forgetfulness to total disability. There are structural and chemical changes in the brains of people who have Alzheimer disease. At present, physicians know of no way to stop or cure it. However, much can be done to diminish the patient’s behavioral and emotional symptoms and to give the family a sense of control of the situation.
Vascular dementia is believed to be the second or third most common cause of dementia. It usually results from a series of small strokes within the brain but can be due to other diseases that affect arteries in the brain. Strokes are sometimes so tiny that neither you nor the afflicted person is aware of any change, but all together they can destroy enough bits of brain tissue to affect memory and other intellectual functions. This condition used to be called “hardening of the arteries,” but autopsy studies have shown that it is stroke damage rather than inadequate circulation that causes the problem. In some cases, treatment can reduce the possibility of further damage.
Alzheimer disease and vascular dementia sometimes occur together. The diagnosis and characteristics of these diseases are discussed in detail in Chapter 18.
Alzheimer disease usually occurs in elderly people, but about one-third of older people suffer from dementia caused by another disease. If a person develops dementia in midlife or experiences symptoms that do not suggest Alzheimer disease, the doctor may diagnose a different dementia. Chapter 18 discusses these dementias. This book addresses general principles for care of any of the diseases that cause dementia.
People who have dementia may also have other illnesses, and their dementia may make them more vulnerable to other health problems. Other illnesses or reactions to medications often cause delirium in people who also have dementia. The delirium can make the person’s mental functions and behavior worse. It is vital, for his general health and to make his care easier, to detect and treat other illnesses promptly. It is important to have a doctor who is able to spend the time to do this with you and the patient.
Depression is common in older people, and it can be the cause of memory loss, confusion, or other changes in mental function. The depressed person’s memory frequently improves when the depression is treated. Although depression can also occur in a person who also has an irreversible dementia, depression should always be treated.
Several other uncommon conditions cause dementia. These are discussed in Chapter 18.
The diseases that cause dementia know no social or racial lines: the rich and the poor, the wise and the simple alike are affected. There is no reason to be ashamed or embarrassed because a family member has dementia. Many brilliant and famous people have developed diseases that cause dementia.
Severe memory loss is never a normal part of growing older. According to the best studies available, 7 to 8 percent of older people have a severe intellectual impairment, and 10 to 15 percent may have milder impairments. The diseases that cause dementia become more prevalent in people who survive into their 80s and 90s, but 50 to 70 percent of those who live into very old age never experience a significant memory loss or other symptoms of dementia. A slight forgetfulness is common as we age but usually is not enough to interfere with our lives. Most of us know elderly people who are active and in full command of their intellect in their 70s, 80s, and 90s. Margaret Mead, Pablo Picasso, Arturo Toscanini, and Duke Ellington were all still active in their careers when they died: all were past 75; Picasso was 91.
As more people in our population live into later life, it becomes crucial that we learn more about dementia. It has been estimated that 5 million people in the United States have some degree of intellectual impairment. A study estimated that Alzheimer disease alone cost the United States $160 billion in 2008.
THE PERSON WHO HAS DEMENTIA
Usually the symptoms of dementia appear gradually. Sometimes the afflicted person may be the first to notice something wrong. The person with mild dementia is often able to describe his problem clearly: “Things just go out of my mind.” “I start to explain and then I just can’t find the words.” Family members may not notice at first that something is wrong. The person who has dementia has difficulty remembering things, although he may be skillful at concealing this. You may observe that his ability to understand, reason, and use good judgment may be impaired. The onset and the course of the condition depend on which disease caused the condition and on other factors, some of which are unknown to researchers. Sometimes the onset of the trouble is sudden: looking back, you may say, “After a certain time, Dad was never himself.”
People respond to their problems in different ways. Some people become skillful at concealing the difficulty. Some keep lists to jog their memory. Some vehemently deny that anything is wrong or blame their problems on others. Some people become depressed or irritable when they realize that their memory is failing. Others remain outwardly cheerful. Usually, the person who has mild to moderate dementia is able to continue to do most of the things he has always done. Like a person with any other disease, he is able to participate in his treatment, family decisions, and planning for the future.
Early memory problems are sometimes mistaken for stress, depression, or even mental illness. This misdiagnosis creates an added burden for the person and the family.
A wife recalls the onset of her husband’s dementia, not in terms of his forgetfulness but in terms of his mood and attitude: “I didn’t know anything was wrong. I didn’t want to see it. Charles was quieter than usual; he seemed depressed, but he blamed it on people at work. Then his boss told him he was being transferred—a demotion, really—to a smaller branch office. They didn’t tell me anything. They suggested we take a vacation. So we did. We went to Scotland. But Charles didn’t get any better. He was depressed and irritable. After he took the new job, he couldn’t handle that either; he blamed it on the younger men. He was so irritable, I wondered what was wrong between us after so many years. We went to a marriage counselor, and that only made things worse. I knew he was forgetful, but I thought that it was caused by stress.”
Her husband said, “I knew something was wrong. I could feel myself getting uptight over little things. People thought I knew things about the plant that I—I couldn’t remember. The counselor said it was stress. I thought it was something else, something terrible. I was scared.”
In those illnesses in which the dementia is progressive, the person’s memory gradually becomes worse, and his troubles cannot be concealed. He may become unable to recall what day it is or where he is. He may be unable to do simple tasks such as dressing and may not be able to put words together coherently. As the dementia progresses, it becomes clear that the damage to the brain affects many functions, including memory, motor functions (coordination, writing, walking), and speaking. The person may have difficulty finding the right name for familiar things, and he may become clumsy or walk with a shuffle. His abilities may fluctuate from day to day or even from hour to hour. This makes it harder for families to know what to expect.
Some people experience changes in personality. Others retain the qualities they have always had: the person may always have been sweet and lovable and may remain so, or he may always have been a difficult person to live with and may become more so. Other people may change dramatically, from amiable to demanding or from energetic to apathetic. They may become passive, dependent, and listless, or they may become restless, easily upset, and irritable. Sometimes they become demanding, fearful, or depressed.
A daughter says, “Mother was always the cheerful, outgoing person in the family. I guess we knew she was getting forgetful, but the worst thing is that she doesn’t want to do anything anymore. She doesn’t do her hair, she doesn’t keep the house neat, she absolutely won’t go out.”
Often little things enormously upset people who have memory problems. Tasks that were previously simple may now be too difficult for a person, and he may react to this by becoming upset, angry, or depressed.
Another family says: “The worst thing about Dad is his temper. He used to be easygoing. Now he is always hollering over the least little thing. Last night he told our 10-year-old that Alaska is not a state. He was hollering and yelling and stalked out of the room. Then when I asked him to take a bath, we had a real fight. He insisted he had already taken a bath.”
It is important for those around the person to remember that many of his behaviors are beyond his control: for example, he may not be able to keep his anger in check or to stop pacing the floor. The changes that occur are not the result of an unpleasant personality grown old; they are the result of damage to the brain and are usually beyond the control of the person who has dementia.
Some people with dementia have hallucinations (hearing, seeing, or smelling things that are not real). This experience is real to the person experiencing it and can be frightening to family members. Some people become suspicious of others; they may hide things or accuse people of stealing from them. Often they simply mislay things and forget where they put them, and in their confusion they think someone has stolen them.
A son recalls: “Mom is so paranoid. She hides her purse. She hides her money, she hides her jewelry. Then she accuses my wife of stealing it. Now she is accusing us of stealing the silverware. The hard part is that she doesn’t seem sick. It’s hard to believe she isn’t doing this deliberately.”
In the final stages of a progressive dementia, so much of the brain has been affected that the person may be confined to bed, unable to control urination and unable to express himself. In the last stages of the illness the person may require skilled nursing care.
It is important to remember that not all these symptoms will occur in the same person. Your family member may never experience some of these symptoms or may experience others we have not mentioned. The course of the disease and the prognosis vary with the specific disorder and with the individual person.
WHERE DO YOU GO FROM HERE?
You know or suspect that someone close to you has a dementia illness. Where do you go from here? You will need to take stock of your current situation and then identify what needs to be done to help the impaired person and to make the burdens on yourself bearable. There are many questions you must ask. This book will get you started with finding the answers.
The first thing you need to know is the cause of the disease and its prognosis. Each disease that causes dementia is different. You may have been given different diagnoses and different explanations of the disease, or you may not know what is wrong with the person. You may have been told that the person has Alzheimer disease when the person has not had a thorough diagnostic examination. However, you must have a diagnosis and some information about the course of the disease before you or the doctor can respond appropriately to day-to-day problems or plan for the future. It is usually better to know what to expect. Your understanding of the illness can help to dispel fears and worries, and it will help you plan how you can best help the person with dementia
Early in your search for help, you may want to contact the Alzheimer’s Association (see Appendix 2). It can refer you to resources and offer you support and information.
Even when the disease itself cannot be stopped, much can be done to improve the quality of life of people who have dementia and their family members.
Dementing illnesses vary with the specific disease and with the individual who is ill. You may never face many of the problems discussed in this book. You may find it most helpful to skip through these chapters to those sections that apply to you.
The key to coping is common sense and ingenuity. Sometimes a family is too close to the problem to see clearly a way of managing. At other times there is no one more ingenious at solving a difficult problem than the family members themselves. Many of the ideas offered here were developed by family members who have called or written to share them with others. These ideas will get you started.
Caring for a person who has dementia is not easy. We hope the information in this book will help you, but we know that simple solutions are not yet at hand.
This book often focuses on problems. However, it is important to remember that confused people and their families do still experience joy and happiness. Because dementing illnesses develop slowly, they often leave intact the person’s ability to enjoy life and to enjoy other people. When things go badly, remind yourself that, no matter how bad the person’s memory is or how strange his behavior, he is still a unique and special human being. We can continue to love a person even after he has changed drastically and even when we are deeply troubled by his present state.
Getting Medical Help for the Person Who Has Dementia
This book is written for you, the family. It is based on the assumption that you and the person who has dementia are receiving professional medical care. The family and the medical professionals are partners in the care of the person who has dementia. Neither should be providing care alone. This book is not meant to be a substitute for professional skills. Many professionals are knowledgeable about the diseases that cause dementia, but misconceptions about dementia still exist. Not all physicians or other professionals have the time, interest, or skills to diagnose or care for a person who has dementia.
What should you expect from your physician and other professionals? The first thing is an accurate diagnosis. Once a diagnosis has been made, you will need the ongoing help of a physician and perhaps other professionals to manage the dementia, to treat concurrent illnesses, and to help you find the resources you need. This chapter is written as a guide to help you find the best possible medical care in your community.
In the course of an illness that causes dementia, you may need the special skills of a consulting physician such as a neurologist, a geriatric psychiatrist, or a geriatrician, in addition to a primary care doctor; a neuropsychologist; a social worker; a nurse; a recreational, occupational, or physical therapist; or a geriatric care manager. Each is a highly trained professional whose skills complement those of the others. They can work together, first to evaluate the person who has dementia and then to help you address ongoing care needs. However, you should insist that one physician keep track of all tests and treatments and coordinate care.
THE EVALUATION OF THE PERSON WITH A SUSPECTED DEMENTIA
When a person has difficulty in thinking, remembering, or learning, or shows changes in personality, it is important that a thorough evaluation be made. A complete evaluation tells you and the doctors several things:
the exact nature of the person’s illness
whether the condition can be reversed or treated
the nature and extent of the disability
the areas in which the person can still function successfully
whether the person has other health problems that need treatment and that might be making her mental problems worse
the social and psychological needs and resources of the person with a suspected dementia and the family or caregiver
the changes you can expect in the future
Procedures vary depending on the physician or hospital. However, a good evaluation includes a medical and neurological examination, consideration of the person’s social support system, and an assessment of her remaining abilities. You may not have a choice of physician or other service, but you can learn what is important in an evaluation and insist that the person receive a complete work-up.
The evaluation may begin with a careful examination by a physician. The doctor will take a detailed history from someone who knows the person well and from the person herself if possible. This will include how she has changed, what symptoms she has had, the order in which the symptoms developed, and information about other medical conditions. The doctor will also perform a physical examination, which may reveal other health problems. A neurological examination (asking the person to balance with her eyes closed, tapping her ankles or knees with a rubber hammer, and other tests) may reveal changes in the functioning of the nerve cells of the brain or the spine.
The doctor will do a mental status examination, in which he asks the person questions about the current time, date, and place. Other questions test her ability to remember, to concentrate, to do abstract reasoning, to do simple calculations, and to copy simple designs. Each of these can reveal problems of function in different parts of the brain. When he does this test, he will take into consideration the person’s education and the fact that she may be nervous.
The doctor will order laboratory tests, including a number of blood tests. The CBC (complete blood count) detects anemia and evidence of infection, either of which can cause or complicate a dementing illness. Blood chemistry tests check for liver and kidney problems, diabetes, and various other conditions. A vitamin B12 level test checks for a vitamin deficiency that might cause dementia. Thyroid studies evaluate the function of the thyroid gland. Thyroid problems are among the more common reversible causes of dementia. The VDRL test can indicate a syphilis infection (syphilis was a common cause of dementia before the discovery of penicillin), but a positive VDRL test does not necessarily indicate that the person has ever had syphilis. The blood tests usually involve inserting one needle, which is no more unpleasant than a pin prick.
The lumbar puncture (LP), or spinal tap, is done to rule out infection in the central nervous system (for example, Lyme disease, syphilis, or tuberculosis), and it may reveal other abnormalities. It is usually done after a local anesthetic has been injected into the back, and it has few complications. The lumbar puncture should not be done if there is no reason to suspect those conditions for which it can provide diagnostic information.
The EEG (electroencephalogram) records the electrical activity present in the brain. It is done by attaching little wires to the head with a paste-like material. It is painless but may confuse the forgetful person. It aids in the diagnosis of delirium and seizures and can offer evidence of abnormal brain functioning, but occasionally an EEG is normal in a person who has dementia.
CT scans, MRI scans, PET scans, and SPECT scans are advanced radiological techniques that help the physician identify changes in the brain that may indicate strokes, Alzheimer disease, and many other conditions that can cause dementia. They are often important to a diagnosis. Because they are expensive, the doctor may use them only when he needs this additional information. These tools are described in more detail on page 570.
These tests involve lying on a table and placing one’s head in an object that looks like a very large hair dryer or like a large open donut. It is painless but may be noisy. It may confuse an already impaired person. If so, a mild sedative can be prescribed to help the person relax.
For some procedures, such as the lumbar puncture and imaging studies such as the CT, MRI, PET, and SPECT scans, you will be asked to sign an informed consent form. This form lists all the possible side effects of the procedure. Reading it can make the procedure seem alarming and dangerous, but in fact, these are relatively safe procedures. The radiation exposure of CT and PET scans are significant but within safe limits. If you have any concerns about possible side effects, ask a doctor to explain them to you.
The history, the physical and neurological exams, and the laboratory tests will identify or rule out known causes of dementia. Other evaluations in addition to the medical assessment are done to understand the person’s abilities and to help you plan for the future.
A psychiatric and psychosocial evaluation is based on interviews with the person and her family. This provides the basis for the development of a specific plan for the care of the individual. It may be done by the doctor, a nurse, or a social worker who works with the physician. It includes helping family members evaluate their own emotional, physical, and financial resources, the home in which the person lives, the available community resources, and the person’s ability to accept or participate in plans.
It is important that the physician determine whether the patient is depressed. Depression can cause symptoms similar to dementia, and it can make an existing dementia worse. Whenever there is a question about depression, a psychiatrist experienced in geriatrics should see the patient. Depression is quite common and usually responds well to treatment.
An occupational therapy evaluation helps to determine how much the person is able to do for herself and what can be done to help her compensate for her limitations. It is done by an occupational, rehabilitation, or physical therapist. These therapists are important members of the health care team. Their skills are sometimes overlooked because in the past they were consulted only in cases where there was the potential for physical rehabilitation. However, they are able to identify the things that the person can still do, and they can devise ways to help the person remain as independent as possible. Part of this assessment is an evaluation of ADLs (activities of daily living). The person is observed in a controlled situation to see if she can manage money, fix a simple meal, dress herself, and perform other routine tasks. If she can do part of these tasks, this is noted. These therapists are familiar with a variety of appliances that can help some people.
Neuropsychological testing (also called cognitive function testing or psychometric testing) may be done to determine in which areas of mental function the person is impaired and in which she is still independent. This testing takes several hours. The tests evaluate such things as memory, reasoning, coordination, writing, and the ability to express oneself and understand instructions. The testing psychologist will be experienced in making people feel relaxed and will take into consideration differences in education and interests.
The final part of the evaluation is your discussion with the doctor and perhaps with other members of the evaluating team. The doctor will explain the findings to you and to the patient if she is able to understand at least part of what is happening.
At this time, the doctor should give you a specific diagnosis (he may explain that he cannot be certain) and a general idea of the person’s prognosis (again, he may not be able to tell you exactly what to expect). The findings of other tests, such as the ADL evaluation, the psychological tests, and the social history, will also be explained to you. You should be able to ask questions and come away with an understanding of the findings of the evaluation. The doctor may make recommendations such as the use of medications or community support services, or he may refer you to someone who can advise you about community services. You, he, and the person herself may identify specific problems and set up a plan to cope with them.
A complete evaluation may take more than one day. You may want to arrange to spread the evaluation over more than one day so that the patient will not become too tired. It usually takes several days for the laboratories to report their findings to the doctor and for him to put all these data together into a report.
Evaluations are almost always done on an outpatient basis.
Sometimes family members and occasionally professionals advise against “putting a confused person through the ‘ordeal’ of an evaluation.” We feel that every person with problems in memory and thinking should be adequately evaluated. An evaluation is not an unpleasant ordeal. Staff accustomed to working with people with dementia are usually gentle and kind. It is important that they make the person as comfortable as possible so that they will be able to measure her best performance.
As we have said, there are many reasons why a person might develop the symptoms of dementia. Some of these are treatable and a small number are fully reversible. If a treatable problem is not found because an evaluation is not done, the afflicted person and her family may suffer unnecessarily for years. Certain diseases can be treated if they are found promptly but can cause irreversible damage if they are neglected.
Even if it is found that a person has an irreversible dementia, the evaluation will give you information about how best to care for the impaired person and how best to manage her symptoms. It gives you a basis on which to plan for the future. Finally, it is important that you know that you have done all that you can for her.
FINDING SOMEONE TO DO AN EVALUATION
In most areas, a family can locate someone to do a thorough evaluation of a person with a suspected dementia. Your family physician may do the evaluation or may refer you to a specialist who can do an evaluation. Your local hospital may give you the names of physicians who are interested in evaluating people with illnesses that cause dementia. The staff at teaching hospitals or medical schools in your area may know of professionals with a special interest in this field. The local Alzheimer’s Association (see Appendix 2) is a good place to inquire about the names of physicians in your area. Dementia centers and “memory disorder clinics” have opened in some areas. If you hear of one, you may want to ask your physician about its reputation. Patients in managed care programs should expect—and receive—a full evaluation and explanation of the findings.
Before you schedule an evaluation, you can ask the evaluating physician what procedures he uses and why. If you feel from this preliminary conversation that he is not really interested in dementia, you should probably seek someone else.
How do you decide whether an accurate diagnosis has been made for someone in your family? In the final analysis, you must settle on a doctor whom you trust and who you feel has done all he can, and then rely on his judgment. This is much easier when you understand something about the terminology, the diagnostic procedures, and what is known about the diseases that cause dementia. If you have been given differing diagnoses, discuss this frankly with the doctor. It is important for you to feel certain that an accurate diagnosis has been made. Occasionally a physician will make a diagnosis of Alzheimer disease without doing a complete evaluation. It is not possible to make an accurate diagnosis without a complete assessment and tests that rule out other conditions. If this happens to you, we suggest you consider seeking a second opinion.
You may hear about people with similar symptoms who are “miraculously” cured, or you may hear statements like “senility can be cured.” Considerable confusion has arisen because some of the causes of dementia are reversible and because dementia and delirium (see Chapter 18) are sometimes confused. There are some unscrupulous individuals who offer bogus “cures” for these tragic illnesses. Chapter 17 discusses some of the things that have been promoted in the media as “treatments” for cognitive decline. An accurate diagnosis and a doctor you trust can assure you that all that can be done is being done. You can also keep informed about the progress of legitimate research through the Alzheimer’s Association, the ADEAR web site of the National Institute on Aging, and major research institutions.
THE MEDICAL TREATMENT AND MANAGEMENT OF DEMENTIA
The illnesses that cause dementia require continuing medical attention. The availability of professional services varies. You, the caregiver, will provide much of the coordination of care. However, there are times when you will need the help of professionals.
You will need a physician who will prescribe and adjust medications, answer your questions, and treat other, concurrent illnesses. The physician who provides continuing care will not necessarily be the specialist who carried out the initial evaluation of the person. He may be your family doctor, part of a geriatric team, or another doctor with a special interest in geriatric medicine. This doctor does not have to be a specialist, although he should be able to work with a neurologist or a psychiatrist if necessary. The doctor you select for continuing care must
be willing and able to spend the necessary time with you and the person who has dementia
be knowledgeable about dementing illnesses and the special susceptibility of persons with dementia to other diseases, medications, and delirium
be easily accessible
be able to make referrals to physical therapists, social workers, and other professionals
Not all doctors meet these criteria. Some doctors have large practices and do not have the time to focus on your problems. It is impossible for any one person to keep up with all the advances in medicine, so some doctors may not be skilled in the specialized care of people who have dementia. Finally, some doctors are uncomfortable caring for people with chronic, incurable diseases. However, no physician should give you a diagnosis without following through with referrals to professionals who can give you the help and follow-up you need. You may have to talk with more than one doctor before you find the one who is right for you. Discuss your needs and expectations honestly with him, and talk over how you can best work with him. Doctors have been trained to keep the patient’s problems confidential. Because of this, some doctors are reluctant to talk to other members of the family or may ask the patient to sign a form. There may be good reasons why you need to know about the patient. Physicians who work with many families of people who have dementia find that conferring with the whole family is important. Discuss this problem frankly with the doctor and ask him to be as open as he can be with the whole family.
In addition to the knowledge and experience of a physician, you may need the skills of a registered nurse who can work with the physician. The nurse may be the one whom you can reach most easily and who can coordinate the work that you, the doctor, and others do to provide the best possible care. She may be the one who understands the difficulties of caring for a person who has dementia at home. She can observe the person for changes in her health status that need to be reported to the doctor, and she can give you support and counsel. After talking with you, the nurse can identify and help solve many of the problems you face. She can teach you how to provide practical care for the person (coping with catastrophic reactions, giving baths, helping with eating problems, managing a wheelchair). She can teach you how and when to give medicine and how to know whether it is working correctly. A nurse may be available to come to your home to assess the person and offer suggestions for simplifying the person’s environment and minimizing the effort you need to expend. Nurse practitioners can perform many of the functions of a physician, including prescribing medication. They often work closely with a primary care physician.
A licensed vocational (practical) nurse may also be helpful to you.
Your physician should be able to refer you to a nurse, or you can locate this help by calling your health department or a home health agency such as the Visiting Nurse Association (see Appendix 2). Medicare or other health insurance pays for nursing services in specific situations if they are ordered by a physician (see pages 437–445).
In some areas, an occupational therapist or physical therapist may be available to help.
The Social Worker
Social workers have a unique combination of skills: they know the resources and services in your community, and they are skilled in assessing your situation and needs and matching these with available services. Some people think of social workers as “just for the poor.” This is not true. They are professionals whose ability to help you find resources can be invaluable. They can also provide practical counseling and help you and your family think through plans. They can help families work out disagreements over care.
Your physician may be able to refer you to a social worker, or, if the impaired person is hospitalized, the hospital social worker may be able to help you. The local office on aging may have a social worker on the staff who will help anyone over age 60.
Most communities have family service agencies staffed by social workers. To locate local social service agencies, look in the telephone book yellow pages under “social service organizations” or under the listings for your state and local governments. You can write to the national office of the Alliance for Children and Families (see Appendix 2), which accredits private agencies and can provide you with the names of your nearest agencies.
Social workers work in a variety of settings, including public social service agencies, some nursing homes, senior citizen centers, public housing projects, and local offices of the state department of health. Sometimes these agencies have special units that serve elderly persons. There are social workers in private practice in some communities. Some social workers will arrange supportive services for your relative who lives out of town. Social workers are professionally trained. In many states they must also be licensed or accredited. You should know the qualifications and training of the person you select.
Fees for social services vary, depending on the agency, the services you need, and whether or not you are using other services of that agency (such as a hospital). Some agencies charge according to your ability to pay.
It is important to select a social worker who understands the illnesses that cause dementia.
The Geriatric Care Manager
The relatively new profession of geriatric care management has been established to help people coordinate the complex services needed to care for ailing older adults. Many but not all geriatric care managers are knowledgeable about dementia, so it is important to get references or check with an agency such as the Alzheimer’s Association to find out how they have helped others. You should directly ask the care manager about her knowledge level and experience in organizing care for people who have dementia.
Increasingly powerful and effective medications are being prescribed for the management of dementia and the other illnesses people with dementia may experience. Be sure the pharmacist is aware of all the prescriptions the person is taking so that the pharmacist can watch for potential drug interactions and alert you to potential side effects, especially when the prescriptions are ordered by different physicians.
Characteristic Behavioral Symptoms in People Who Have Dementia
In Chapters 3 through 9 we discuss many of the problems that families may encounter in caring for a person with dementia. Although, as yet, nothing can be done to cure some illnesses that cause dementia, it is important to remember that much can be done to make life easier for you and the person who has dementia. The suggestions we offer come from our clinical experience and the experiences that family members have shared with us.
Each individual and each family is different. You may never experience many of these problems. The problems you will face are influenced by the nature of the specific disease, by your personality, by the personality of the person who has dementia, and, often, by other factors, such as where you live. We do not want you to read through this section as if it were a list of what lies ahead of you. It is a comprehensive list of problem areas for you to use as a reference when a specific problem arises.
THE BRAIN, BEHAVIOR, AND PERSONALITY: WHY PEOPLE WHO HAVE DEMENTIA DO THE THINGS THEY DO
The very nature of brain injuries can make them difficult to live with. The brain is a complex, mysterious organ. It is the source of our thoughts, our emotions, and our personality. Injury to the brain can cause changes in emotions, personality, and the ability to reason. The illnesses that cause dementia are biological: many of the mental functions and behavioral changes seen in dementia arise from structural and chemical changes in the person’s brain. Most illnesses that cause dementia do their damage gradually, so the effects are not seen suddenly, as are the effects of a major stroke or head injury. Consequently, the behavior of a person who has dementia often seems puzzling in contrast to behaviors due to other illnesses. It is not always evident that many of the noticeable symptoms (changes in personality, for example) are the result of a disease, because the person often looks well.
You may wonder which behaviors are caused by the disease and which are deliberate or willful, or family members may disagree about this. In the following chapters we discuss some of the behavioral symptoms you may face and suggest ways you can respond. Understanding that the damage to the brain causes these behavioral symptoms will help you cope with them.
The brain is an incredibly complex organ composed of billions of microscopic neurons, or brain cells. All the tasks of the brain—thinking, talking, dreaming, walking, listening to music, and hundreds of others—are carried out when these cells communicate with one another.
Different parts of the brain perform different tasks. When a person has a stroke and cannot speak, we know that the stroke occurred in the speech center of the brain and destroyed cells that are necessary for the person to talk. A stroke often causes extensive damage, but to only a few areas of the brain. In the illnesses that cause dementia, damage is done in many areas and affects many aspects of mental function. While a stroke does all its damage at once, Alzheimer disease gradually does more and more damage. This means that different cognitive abilities are damaged unevenly and the person will be able to do some things but not others. For example, he may be able to remember things from long ago but not from yesterday.
Our brains do thousands of tasks, and we are usually not aware of most of them. We assume that other people’s brains, like ours, are working as they should—but with a person who has dementia we cannot make this assumption. When the person does something odd or inexplicable, it is usually because some part of the brain has failed to do its job. In addition to controlling memory and language, the brain enables us to move our various body parts, filters out the things we don’t want to pay attention to, gives feedback on the things we do, enables us to recognize familiar objects, and coordinates all the activities it is carrying out. When brain damage is uneven, the person may do things that don’t make sense to us.
John Barstow can remember he was angry with his wife, but he cannot remember her explanation of why she did what she did. In fact, he may not even remember what she did that made him angry.
Researchers think that our brain stores and processes memories of emotions differently from memories of fact. It is possible for the dementia to damage one without damaging the other as much. Old social skills and the ability to make customary social remarks are often retained longer than insight and judgment. Thus, a person may sound fine to the doctor but in fact be unable to care responsibly for himself.
It may be that damaged nerve cells, like a loose light bulb, connect sometimes and fail other times. This may be why a person can do something one day and not another. Even when we do something that seems simple, the brain must carry out many tasks. If the illness that causes dementia prevents the brain from performing any one of the steps in a task, the task will not get done.
“I asked my sister to make us both a cup of tea, but she ignored me. Then half an hour later, she went to the kitchen and made herself a cup of tea.”
Obviously this sister was still able to do this task but probably was not able to understand or act on language even though she heard the request.
Behavioral and psychiatric symptoms are often caused by the damage to the brain and are not something the person can control or prevent. Behavior that upsets you is almost never deliberate and almost never intended to “get your goat.” Because the brain itself is damaged, the person has a severely limited ability to learn things or understand explanations. It is futile to expect him to remember or learn and frustrating to both of you to try to teach him. The person does not want to act like this and is trying as hard as he can.
Mrs. Robinson helped out in her older daughter’s kitchen, but when she visited her younger daughter, she only sat and criticized. The younger daughter felt that Mrs. Robinson had always preferred the older sister and that her refusal to help was a less-than-subtle reminder of her preference. In fact, the mother had been familiar with the older sister’s kitchen before she became forgetful, but she could no longer learn new information, even things as simple as where the dishes were kept in her younger daughter’s unfamiliar kitchen.
A person’s feelings also affect his behavior. The person who has dementia probably feels lost, worried, anxious, vulnerable, and helpless much of the time. He may also be aware that he fails at tasks and feel that he is making a fool of himself. Imagine what it must feel like to want to say something nice to your caregiver but all that comes out are curse words. Think how frightening it must be if a familiar home and familiar people now seem strange and unfamiliar. If we can find ways to make a person who has dementia feel more secure and comfortable, behavioral symptoms may decline.
Other things also affect behavior. When a person is not feeling well, he will be less able to think. In Chapter 6 we discuss how illness, pain, and medication can make a person’s thinking—and behavior—worse.
When you speak to a person, he must hear you: the first step in the processes of communication is sensory input. The ability to repeat immediately what is heard may be retained, but the next step, to remember what was said, at least temporarily, is often lost in people who have dementia. If the person cannot temporarily recall what you said, he cannot respond. Often a person can recall only part of what was said and will act on only that part. If you say, “The grandchildren are coming to dinner, so you must have a bath,” he may retain only “have a bath” and act accordingly. If he retains nothing of what you said, he may be angry when you lead him to the bathroom. As well as retaining what was heard, the person must comprehend what the words mean and evaluate what was said. Many things may go wrong in this process and may result in a reply that seems inappropriate to you. The person will act on what he thinks he heard. But he can act on only what his ears heard, his brain registered, his mental dictionary understood, and his mind processed. If his brain scrambles the message, he will respond in a way that is appropriate to what he understood, and if, in his confusion, he thinks that you are a stranger or that he is a young man and you are his mother, his response will be based on the faulty understanding of the situation. A person who was usually placid may respond calmly, a person who was usually irritable may respond with anger, but whatever the response, it will be appropriate to the message received, not necessarily the message you gave.
The final step in communication is the person’s answer. Things can go wrong here, too. What comes out may not be what the person who has dementia intended. This too can sound like an intentional evasion, an insult, or a foolish answer.
There is much that we do not know about this process. Neuropsychologists study the mind and try to understand these complex cognitive processes. Often a neuropsychologist can figure out why a particular person acts as he does, and sometimes the neuropsychologist can devise a way around the disability. Although there is still an enormous amount to learn about how this process works, when people who have dementia say or do things that don’t make sense or that seem nasty or deliberate, it is almost certainly the brain damage at work. The person you are caring for is also often miserable and is doing the best he can. In the rest of this book we show you many ways you can help.
You may not be able to figure out what the person understood or intended. Because the brain is so complex, even the best experts are often at a loss. In addition, many families do not have access to a neuropsychologist. Do the best you can; regard problems as the result of the brain damage, not as something you caused or something the person who has dementia intended. Affection, reassurance, and calm are best, even when things make no sense.
CAREGIVING: SOME GENERAL SUGGESTIONS
Be informed. The more you know about the nature of the diseases that cause dementia, the more effective you will be in devising strategies to manage behavioral symptoms. The behavioral symptoms you have to cope with will vary with the specific disease the person has, so it helps to have an accurate diagnosis.
Share your concerns with the person who has dementia. When a person is only mildly to moderately impaired, he can take part in managing his problem. You may be able to share with each other your grief and worries. Together you may be able to devise memory aids that will help him remain independent. People whose impairments are mild may benefit from counseling that can help them accept and adjust to their limitations. If the person does not recognize the problem, accept his point of view.
Try to solve your most frustrating problems one at a time. Families tell us that the day-to-day problems often seem to be the most insurmountable. Getting Mother to take her bath or getting supper prepared, eaten, and cleaned up can become daily ordeals. If you are at the end of your rope, single out one thing that you can change to make life easier, and work on that. Sometimes changing small things makes a big difference.
Get enough rest. One of the dilemmas families often face is that the caregiver may not get enough rest or may not have the opportunity to get away from his caregiving responsibilities. This can make the caregiver less patient and less able to tolerate irritating behavioral symptoms. If things are getting out of hand, ask yourself if this is happening to you. If so, you may want to focus on finding ways to get more rest or more frequent breaks from your caregiving responsibilities. We recognize that this is difficult to arrange. We discuss it in Chapter 10.
Use your common sense and imagination; they are your best tools. Adaptation is the key to success. If a thing cannot be done one way, ask yourself if it must be done at all. For example, if a person can eat successfully with his fingers but cannot appropriately use a fork and spoon, don’t fight the problem; serve as many finger foods as possible. Accept changes. If the person insists on sleeping with his hat on, this is not harmful; go along with it. Cognitive losses are uneven: accept what does not seem logical.
Maintain a sense of humor; it will get you through many crises. The person who has dementia is still a person. He needs and enjoys a good laugh too. You may both be able to laugh when something goes wrong. Sharing your experiences with other families will help you. Surprisingly, these groups of families often find their shared experiences funny as well as sad.
Try to establish an environment that allows as much freedom as possible but also offers the structure that people who have dementia need. Establish a regular, predictable, simple routine for meals, medication, exercising, bedtime, and other activities. Do things the same way and at the same time each day. If you establish regular routines, the person may gradually learn what to expect. Change routines only when they aren’t working. Keep the person’s surroundings reliable and simple. Leave furniture in the same place. Put away clutter.
Remember to talk to the person directly. Speak calmly and gently. Make a point of telling him what you are doing and why. Let him have a part in deciding things as much as possible. Avoid talking about him in his hearing, and remind others to avoid this also.
Have an ID necklace or bracelet made for the person who has dementia. Include on it the nature of his disease (for example, “memory impaired”) and your telephone number. This is one of the single most important things you can do. Many people who have dementia get lost or wander away at one time or another, and an ID can save you hours of frantic worry. Stores that sell monogrammed items may make these, or your drugstore may sell them. Your local chapter of the Alzheimer’s Association may be able to tell you where to purchase an ID necklace or bracelet. Telephones and GPS devices that can help you find a lost person are also available from phone providers and other companies.
Keep the person active but not upset. Families often ask if retraining, reality orientation, or keeping active will slow or stop the course of the disease. They may ask if being idle hastens the course of the disease. Some people who have dementia become depressed, listless, or apathetic. Families often wonder whether encouraging such a person to do things will help him to function better.
Activity helps to maintain physical well-being and may help to prevent other illnesses and infections. Being active helps the impaired person continue to feel that he is involved in the family and that his life has meaning.
It is clear that people who have illnesses that cause dementia cannot learn as well as before because brain tissue has been damaged or destroyed. It would be unrealistic to expect them to learn new skills. However, some individuals can learn simple tasks or facts if they are repeated often enough. Some people who feel lost in a new place eventually “learn” their way around.
At the same time, too much stimulation, activity, or pressure to learn may upset the person who has dementia, may upset you, and may accomplish nothing. The key to this is balance:
Accept that lost skills are gone for good (the woman who has lost the ability to cook will not learn to fix a meal), but know that repeatedly and gently giving information that is within the person’s abilities will help him function more comfortably (the person going into a strange day care setting will benefit from frequent reminders of where he is).
Know that even small amounts of excitement—visitors, laughter, changes—can upset the person who has dementia, but plan interesting, stimulating things within his capabilities—a walk, visiting one old friend.
3. Look for ways to simplify activities so that a person can continue to be involved within the limits of his abilities (the woman who can no longer fix a whole meal may still be able to peel the potatoes).
Look for things the person is still able to do and focus on them. A person’s intellectual abilities are not all lost at once. Both of you will benefit from carefully assessing what he can still do and making the best use of those abilities. For example,
Mrs. Baldwin often cannot remember the words for things she wants to say, but she can make her meaning clear with gestures. Her daughter helps her by saying, “Point to what you want.”
Consider having a trained person come to the home to visit the person who has dementia or trying a group program such as day care designed for people who have dementia (see Chapter 10). Day care often offers the right level of stimulation for some people and gives you time off as well.
Chapter 17 discusses some of the things you may have heard will prevent or delay the progress of an illness that causes dementia. While you may want to try some of these suggestions, such as “memory enhancing” games, give priority to keeping the person who has dementia calm and comfortable. For example, if a memory game upsets the person, you may decide to stop using it.
People who have dementia forget things quickly. For the person with a memory impairment, life may be like constantly coming into the middle of a movie: one has no idea what happened just before what is happening now. People with illnesses that cause dementia may forget what you just told them, may start to prepare a meal and then forget to turn the stove off, may forget what time it is or where they are. This forgetfulness of recent events can seem puzzling when the person seems to be able to clearly remember events long past. There are some specific suggestions for memory aids throughout this book. You may think of others that will help you.
Forgetful people may remember events long past more clearly than recent events, or they may remember some things and not others. This has to do with the way the brain stores and receives information; it is not something the person does deliberately.
The success of memory aids depends on the severity of the dementia. A person who has mild dementia may devise reminders for himself, while a person with more severe dementia will only become more frustrated by his inability to use the aid. Written notes and reminders may help people who have mild dementia.
It is often helpful to put a simple list of the day’s activities where the person can easily see it. A regular daily routine is much less confusing than frequent changes.
Leave familiar objects (pictures, magazines, television, radio) in their usual places where the person can see them easily. A tidy, uncluttered house will be less confusing to an impaired person, and misplaced items will be easier to find. Some families have found that putting labels on things helps. Labeling drawers “Mary’s socks,” “Mary’s nightgowns” may help.
Remember, however, that with an illness that causes a progressive dementia, the person will eventually be unable to read or will not be able to make sense of what he reads. He may be able to read the words but be unable to act on them. Some families then use pictures instead of written messages.
As the disease progresses, the person will be unable to remember what you tell him even for a minute. You will need to repeat yourself and remind and reassure him over and over.
OVERREACTING, OR CATASTROPHIC REACTIONS
Even though Miss Ramirez had told her sister over and over that today was the day to visit the doctor, her sister would not get into the car until she was dragged in, screaming, by two neighbors. All the way to the doctor’s office, she shouted for help, and when she got there she tried to run away.
Mr. Lewis suddenly burst into tears as he tried to tie his shoelaces. He threw the shoes in the wastebasket and locked himself, sobbing, in the bathroom.
Mrs. Coleman described several incidents similar to this one, in which her husband had mislaid his glasses.
“You threw out my glasses,” he told her.
“I didn’t touch your glasses,” she answered.
“That’s what you always say,” he responded. “How do you explain that they are gone?”
“You do this to me every time you lose your glasses.”
“I did not lose them. You threw them out.”
Reflecting back, Mrs. Coleman knew that her husband had changed. In the past he would have merely asked her if she knew where his glasses were instead of accusing her and starting an argument.
People with brain diseases often become excessively upset and may experience rapidly changing moods. Strange situations, confusion, groups of people, noises, being asked several questions at once, or being asked to do a task that is difficult for them can precipitate these reactions. The person may weep, blush, or become agitated, angry, or stubborn. He may strike out at those trying to help him. He may cover his distress by denying what he is doing or by accusing other people of things.
When a situation overwhelms the limited thinking capacity of a person who has dementia, he may overreact. Normal people sometimes do this when they are bombarded with more things at one time than they can manage. People who have dementia have the same reaction to simpler, everyday experiences. For example,
Every evening, Mrs. Hamilton gets upset and refuses to take a bath. When her daughter insists, she argues and shouts. This makes the rest of the family tense. The whole routine is dreaded by everyone.
Taking a bath means that Mrs. Hamilton must think about several things at once: undressing, unbuttoning, finding the bathroom, turning on faucets, and climbing in the tub. At the same time, she feels insecure without clothes on and she feels she has lost her privacy and independence. This is overwhelming for a person who cannot remember doing the task before, who can’t remember how to do all these tasks, and whose mind cannot process all these activities at once. One way to react is to refuse to take a bath.
We use the term catastrophic reaction to describe this behavior. (The word catastrophic is used in a special sense; it does not mean that these situations are necessarily very dramatic or violent.) Often a catastrophic reaction does not look like behavior caused by an illness that causes dementia. The behavior may look as if the person is merely being obstinate, critical, or overemotional. It may seem inappropriate to get so upset over such a little thing.
Catastrophic reactions are upsetting and exhausting for you and for the person who has dementia. They are especially upsetting when it seems as if the person you are trying to help is being stubborn or critical. The person may get so upset that he refuses necessary care. Learning how to avoid or lessen catastrophic reactions is a major key to easier management of them.
Sometimes catastrophic reactions and forgetfulness are the first behaviors family members see when they begin to realize that something is wrong. The person with a mild impairment may benefit by being reassured that his panic is not unusual and that you understand his fear.
The things that can help prevent or reduce catastrophic reactions depend on you, on the individual who has dementia, and on the extent of his limitations. You will gradually learn how to avoid or limit these reactions. First, you must fully accept that these behaviors are not just stubbornness or nastiness but a response that the person with dementia cannot help. The person is not just denying reality or trying to manipulate you. Though it seems strange, you may have more control over the person’s reaction than he does.
The best way to manage catastrophic reactions is to stop them before they happen. The things that trigger these outbursts vary from one person to another and from one time to another, but as you learn what upsets your family member, you will be able to reduce the number and frequency of outbursts. Some of the common causes of catastrophic reactions are
needing to think about several things at once (for example, all the tasks involved in taking a bath)
trying to do something that the person can no longer manage
being cared for by someone who is rushed or upset
not wanting to appear inadequate or unable to do things (for example, if the doctor asks a lot of questions that the person cannot answer)
being hurried (when he thinks and moves more slowly now)
not understanding what he was asked to do
not understanding what he saw or heard
being tired (none of us are at our best when we are tired)
not feeling well
not being able to make himself understood (see also the following section)
being treated like a child
Anything that helps remind the person who has dementia about what is going on, such as following familiar routines, leaving things in familiar places, and written instructions (for people who can manage them), can help to reduce catastrophic reactions. Because catastrophic reactions are precipitated by having to think of several things at once, simplify what the person has to think about. Take things one step at a time, and give instructions or information step by step. For example, when you help a person bathe, tell the person one thing at a time. Say, “I’m going to unbutton your shirt” and then reassure him, “It’s all right.” Say, “Now I’m going to slip your shirt off. That’s fine. Now take a step up into the tub. I will hold your arm.”
Give the person who has dementia time to respond. He may react slowly and become upset if you rush him. Wait for him. If a person is having frequent catastrophic reactions, try to reduce the confusion around him. This might mean having fewer people in the room, having less noise, turning off the television, or reducing the clutter in the room. The key is to simplify, to reduce the number of signals the impaired, disoriented brain must sort out.
Find things the person who has dementia can realistically do. If strange places upset him, you may not want to take him on a trip. If he gets tired or upset quickly, plan shorter visits with friends.
Plan demanding tasks for the person’s best time of day. Avoid asking him to do things when he is tired. Know what his limits are and try not to push him beyond them.
Mr. Lewis’s family recognized that tying shoelaces had become too difficult for him but that he needed to remain as independent as possible. Buying him slip-on shoes solved the problem.
Mrs. Coleman’s husband often lost things because he forgot where he put them. She found it helpful to ignore his accusations and help him find his glasses. Knowing that accusing her was his way of reacting to his forgetfulness made it easier for her to accept the insult.
Do the parts of a task that the person finds difficult yourself. Families often worry that they are doing too much for a person and might make him more dependent. A good rule is to let a person do for himself until he shows the first signs of frustration, then assist him before he becomes more upset. Urging him on will usually only upset him more.
If a person seems more irritable than usual, check carefully for signs of illness or pain. Even minor illness or discomfort can make the person’s thinking worse. Reactions to medication sometimes cause these outbursts. Have the person’s medications been changed in the past three weeks?
Reconsider your approach. Are you unintentionally rushing him? Did you misunderstand him? Did you ignore his protests? Are your behavior and voice communicating your own frustration to him? Although it is easy to treat a person who is so dependent like a child, this may make him angry and precipitate an outburst.
Often many small stressors build up for the person who has dementia: just trying to make sense of things, being tired, noise from the television, a delay in having lunch, your feeling rushed—all may add up so that when you suggest a bath, the person is already so stressed that he blows up. The person may be so stressed that he is on the edge of an outburst much of the time. Reducing his overall stress level may make a necessary task like bathing easier.
Watch for signs of increasing stress, such as irritability, stubbornness, flushing, and refusing to do things. Stop what you are doing and let the person calm down.
When the person does become upset or resistant, remain calm and remove him from the situation in a quiet, unhurried way. Often the emotional storm will be over as quickly as it began and the person will be relieved that the upset is over. His short memory may work to your advantage: he may quickly forget the trouble.
As a person who has dementia becomes upset, his ability to think and reason temporarily declines even more. It is useless to argue with him, explain things to him, or even ask him to complete a task when he is in the grip of a catastrophic reaction. Arguing, explaining, or restraining him may make things worse. Help him calm down and relax so that he can think as well as possible. Take him away from what upset him, if possible.
You may lose your temper with a person who is having catastrophic reactions or is unable to do what seems like a simple task. This usually will make the person’s behavior worse. Occasionally losing your temper is not a calamity; take a deep breath and try to approach the problem calmly. The person will probably forget your anger much more quickly than you will.
Try not to express your frustration or anger to the person who has dementia. Your frustration will further upset him when he cannot understand your reaction. Speak calmly. Take things one step at a time. Move slowly and quietly. Remember that the person is not being obstinate or doing this intentionally.
Gently holding a person’s hand or patting him may help calm him, but the person may feel that you are restraining him and become more upset. Physically restraining a person often adds to his panic. Restrain a person only if it is absolutely essential and if nothing else works.
If catastrophic reactions are happening often, keeping a log may help you identify their cause. After the outburst is over, write down what happened, when it happened, who was around, and what happened just before the outburst. Look for a pattern. Are there events, times, or people that might be triggering upsets? If so, can you avoid them?
These overreactions are distressing to the person who has dementia as well as to you. After he has calmed down, reassure him. Tell him that you recognize his distress and that you still care for him.
If you find that catastrophic reactions are occurring frequently and that you are responding with anger and frustration, this is a warning that you are overtired. You are caught in a vicious circle that is bad for both you and the person who has dementia. It is essential that you have time away from the person. Read Chapter 10, “Getting Outside Help,” and make the effort to take some time off for yourself even if you feel too tired and overwhelmed to do so.
You may feel that none of these suggestions will work, that you are caught in an endless battle. The suggestions we offer may not work, but if you are feeling that nothing will help you, this may be an indication of your own depression (see pages 388–89). In fact, some things can be found that will reduce catastrophic reactions in most people who have dementia.
Identifying triggers and reducing stressors can be challenging. Brainstorming with other family members in a support group is helpful (see pages 422–25).
Mrs. Frank was having her hair done. The beautician was working on the back of her head, and Mrs. Frank kept trying to turn around. When this happened, the beautician would turn Mrs. Frank’s head back. Then Mrs. Frank began batting at the beautician’s hands. She looked as if she were about to cry. Finally, Mrs. Frank turned around in the chair and hit the beautician.
Mr. Williams stood close to a group of nurses who were talking. He bounced up and down on his toes. The nurses ignored him even though he bounced faster and faster. When he began to shout, one of the nurses took his arm to lead him away. He pulled away from her but she held on. When she did not let go, he struck her.
When an individual who has dementia hits (or bites, pinches, or kicks) another person, it is upsetting for everyone. Sometimes this happens frequently and the caregiver or nursing home staff may feel they cannot continue to provide care.
Combativeness is almost always an extreme catastrophic reaction. It often can be prevented by being alert to the person’s signals that his stress level is rising. Perhaps if the beautician had talked to Mrs. Frank about what she was doing and showed her in a mirror how her hair was coming, Mrs. Frank would have understood what was going on and would have been less upset. Turning and batting at the hairdresser were warnings that she was becoming distressed.
Perhaps Mr. Williams wanted to join the conversation. If the nurses kept a log of his outbursts, they might observe that bouncing on his toes was a sign of his rising agitation. If the nurses had included him in their conversation or suggested something else he might enjoy doing, he might not have gotten upset. Physically holding or pulling someone is often perceived by the person as an attack and leads to an angry response.
When a person becomes agitated, immediately stop whatever is upsetting him and let him relax. Do not continue to push him. Reread the material on catastrophic reactions in this section and in other books. Look for ideas for preventing outbursts or stopping them when they first begin. Sometimes small amounts of medication help people who are upset much of the time; however, medication is not a substitute for changing the things going on around the person or how caregivers respond to him. See “Medications” in Chapter 6.
PROBLEMS WITH SPEECH AND COMMUNICATION
You may have problems understanding or communicating verbally with the person who has dementia. There are two kinds of problems of communication: the problems a person with dementia has in expressing himself to others, and the problems he has in understanding what people say to him. He may understand more than he can express or may express more than he can understand. Do not make assumptions about what he understands.
Excerpted from The 36-Hour Day by Nancy L. Mace Copyright © 2012 by Nancy L. Mace. Excerpted by permission.
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