Alzheimer's: A Caregiver's Guide and SourceBook

Alzheimer's: A Caregiver's Guide and SourceBook

by Howard Gruetzner



Product Details

ISBN-13: 9780471522034
Publisher: Wiley, John & Sons, Incorporated
Publication date: 10/28/1989
Pages: 255

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The Caregiver

Alzheimer's disease cannot be cured. Part I focuses on what we know about this disease and what we can do to care for individuals diagnosed with Alzheimer's. A better understanding of this condition and its behavioral manifestations enables caregivers to respond more effectively to the needs of loved ones.

Our beliefs about the Alzheimer's patient and his or her behavior do not take into account the effects of brain impairment. We have no frame of reference through which brain-impaired behavior can be understood. Part I provides this perspective so that caregivers can more effectively and positively respond to the problems and needs of their loved ones.

The caregiver experience is characterized by the adaptability of the Alzheimer's patient and his or her family to this illness. Part I examines thisadjustment in several ways. Stages of the illness and the family adjustment are considered. A step-by-step guide describes the experience from the time initial symptoms are noticed to the point care is planned and caregiver stress is encountered. Practical approaches to these steps are considered. Community resources are described in the last chapter of Part I since social support is such an important way for caregivers to provide for the increasing needs of theirloved ones and themselves.

What Is Alzheimer's Disease?

A Case History

Jewell Johnson had once been quite active in her neighborhood. She had also attended church regularly. These activities had not significantly changed following her husband's death three years earlier. Her friends and family had been impressed with how well she made it through the grief and kept her life going. She had always been stronger and healthier than her husband. Mrs. Johnson was now 74 and seemed to be a model for aging.

Uncharacteristic Behavior

Several months ago, her closest neighbors began to notice changes. She dropped out of church. They discovered that her feelings had been hurt. Apparently, she had made some mistakes as the treasurer of her Sunday School class, losing several hundred dollars. That was not her story, though; Mrs. Johnson insisted that someone had stolen the money. It had all been cash, and for some reason she had never deposited it in the bank.

She began to stay home more and more often. It also surprised the neighbors that she discouraged their visits. They were becoming worried about her and considered calling relatives, but her son and daughter both lived several hundred miles away and telephoned regularly. Their professional jobs made it difficult to visit very often. The pastor tried to visit, but Jewell was uncharacteristically rude to him and other church members who tried to visit her.

Household Chores and Personal Hygiene Neglected

The yard was still covered with leaves left since the fall. It was now the middle of winter. On occasion, neighbors would check on Jewell. Several times a week, her morning newspapers remained in the yard, and this gave neighbors an excuse to check on her. She always came to the door in her robe and slippers. She thanked them for the paper, making excuses that she had a cold and was resting. She refused their offers to help her. If they pursued these offers too long, she would become more restless and agitated. A few times she had shut the door abruptly.

Her closest next-door neighbor called the daughter, Joan. Joan was caught off guard because the phone conversations with her mother-- while briefer and more vague-- had not been that different. Her mother had always been self-reliant and independent; it was no surprise that she was so reluctant to accept help. It was strange that Jewell never told her daughter of any problems. Maybe that was why the conversations were briefer and so general. The neighbor was asked to watch after Jewell, and the daughter called her mother.

Behavior Changes Denied

The conversation was not pleasant, nor was it very long. Jewell denied any problems and told her daughter the neighbor was meddling. Jewell thought the neighbor's son was trying to get her house. The next-door neighbor had never been honest. As the paranoia became more vivid, Jewell became more upset and hung up on her daughter. Joan called the neighbor and said she would be down the following weekend.

Bills Unpaid

The next day, both the gas and electric company cut off their services to Jewell's home. In the dead of winter, they do not usually cut off the services of elderly people. The neighbor argued on Jewell's behalf but to no avail. She had not paid her bills for more than three months (about the same time she stopped attending church). Attempts to get Mrs. Johnson to the door failed. She would look out the window briefly, but that was all she would do. No one could get into the house. Neighbors called the daughter, but they could think of nothing else that would help.

Delusions Develop

Late that night, the neighbors were awakened by screaming outside Jewell's house. It was nearly freezing, and she was outside her home in a gown. She was afraid of the neighbors who tried to help calm her. She kept talking about her husband roaming around in the attic. She was afraid of him. The police were called, and when they arrived on the scene, Mrs. Johnson was frightened and still very upset. She was quite confused and could only talk about her husband in the attic. They investigated and found no sign of anyone in the attic-- just as they had expected. A crisis hot line was called, and Mrs. Johnson was hospitalized since she had become a danger to herself.

Closer examination of the household was revealing. There was no food. She probably had not eaten anything to speak of for several days. The kitchen was a mess and the gas burners were still turned on, although gas service had been terminated. The police explored the rest of the household. Clothes were lying around. The toilet had not been flushed for days, and Mrs. Johnson had had some accidents in her bedroom. Newspapers lay on the living room floor rolled up and unread. Bills and other mail were heaped in piles near the newspapers.

After being stabilized in the psychiatric hospital, a thorough examination was conducted. Upon its completion, only one conclusion could explain what had happened to Mrs. Jewell Johnson over the past year. Something had obviously been wrong before her behavior changes suggested it. In fact, it was admirable that she had so successfully compensated for the difficulties she was experiencing in memory and thinking. The diagnosis was inescapable-- probable Alzheimer's disease.

It was 1980, and her family and friends were bewildered. They had never heard of Alzheimer's disease (AD). They had been prepared to accept a diagnosis of "senility." Maybe depression or old age could explain her problems. In those days, older people with behavioral problems and psychiatric symptoms that now suggest dementia were hospitalized for evaluation when families could not manage them. Like the family and friends of Jewell Johnson, these individuals tried to understand what was happening and what, if anything, could be done.

Early Detection and Treatment

More people have heard of Alzheimer's disease in this new millennium and may understand that it is a condition that affects the brain. However, they may not know much more today than the family and friends of Mrs. Johnson knew in 1980. Even when Alzheimer's is suspected, too much time passes between observing symptoms and getting professional help. This is significant because treatments are now available that can slow the progression of the disease and help people with AD function better for a longer period of time.

It is important that treatment be initiated as soon as possible so that more extensive and irreversible deterioration of nerve cells in the brain can be delayed and symptoms can be managed. Then people may take part in decisions that affect them and learn to adapt to the disease. However, people still attribute symptoms of AD to other conditions and do not seek help. People who suspect that a loved one might be developing AD delay or avoid seeking a diagnosis. Since early symptoms develop slowly, they may not appear to be significant at first. Personality changes, poor judgment, and forgetfulness may be overlooked for a while. Those with early symptoms are able to compensate for them or offer other explanations that family members accept. Family members may be hesitant to seek professional help when early symptoms occur.

Alzheimer's is a disease of the brain that causes a gradual but progressive loss of abilities in memory, thinking, reasoning, judgment, orientation, and speech. It causes an inability to recognize and identify objects and carry out motor activities. People with the disease are eventually unable to perform the most basic activities of daily living such as dressing, cooking, and bathing. AD is not the result of normal aging, but it does occur more frequently in those 65 years of age or older.

More Than Simple Forgetfulness

Alzheimer's disease is far more serious than the occasional forgetfulness experienced by the elderly. In its early stages, however, the disease may be difficult to distinguish from ordinary forgetfulness. Because the disease affects the brain gradually and persons ordinarily will compensate for the early symptoms, neither the person with AD nor those around her may suspect a real problem at first. The results of Alzheimer's slow but progressive damage to the brain may not be noticed until the person experiences greater than normal life stressors, major health problems, or a situation that stretches coping abilities to the breaking point; or until major behavior problems, a driving accident, unpaid bills, or significant changes in daily functioning make denial or avoidance of what is happening impossible.

Causes of Disease-- Multiple Factors

Research has made considerable progress toward understanding the disease. Ongoing research is getting closer to unlocking the secrets of the disease. AD is not a simple disease with one obvious cause. It is a complicated disease that develops as the result of a complex cascade of events that occur over a period of time and affect the brain. Alzheimer's disease results from a combination of genetic and environmental factors, as well as from other factors that are being identified. Nongenetic factors such as the free radical damage linked with oxidative stress, disease-related brain inflammation, and damage associated with brain infarcts are believed to play a role in the development of the disease. The multiple genetic and nongenetic mechanisms through which the disease develops demonstrate the difficulties researchers face in identifying a clear-cut cause that points to one definite treatment. Preventing or delaying AD involves multiple approaches.

Possible Causes

Alzheimer's (pronounced ALTS-hi-merz) disease was first identified in 1906 by a German neurologist, Alois Alzheimer. His subject was a 51-year-old woman who exhibited problems with memory and disorientation. Later, Alzheimer identified depression and hallucinations as additional symptoms. The woman's condition continued to deteriorate; a severe dementia was evident, and the woman eventually died at age 55 in a mental institution. An autopsy revealed that her brain had cortical atrophy and abnormalities in the cerebral cortex called neurofibrillary tangles and neuritic plaques. These changes in the brain were thought to have caused the impairment of the woman's memory, her disorientation, and her cognitive and emotional decline.

Beta-amyloid, an abnormal protein aggregating into plaques outside of neurons, is implicated as being a possible cause, or very close to the cause, of AD. The tau protein, aggregating into twisted tangles inside neurons, is thought by some researchers to have a causative role in the disease process. Normal tau protein helps bind and stabilize microtubules, which are part of the internal, skeleton-like structure of the cell. In AD, tau is chemically altered, which causes microtubules to fall apart. The collapse of microtubules disrupts connections over which cell communications are transported.

Genetic factors are certainly involved in the disease, but Alzheimer's is a genetically complex and heterogeneous disease. Only a small percentage of AD cases are actually caused by genetic defects. These will be considered below and in Chapter 4. Research has also identified genetic links to the disease. These genetic factors do not cause the disease, but they are associated with an increased risk of getting Alzheimer's. Scientists are identifying other factors that might confer susceptibility for developing AD, for example, high-fat diets and high cholesterol levels. More research must be conducted before these and other findings can be considered conclusive. We do know that Alzheimer's is caused by a combination of multiple causative and risk factors.

Genetic Causes and Risks

Genetic defects on three chromosomes-- 21, 14, and 1-- are known to cause early-onset Alzheimer's in a small number of families. The disease occurs before age 60 in these individuals. Autosomal-dominant inheritance is usually involved in early-onset cases. This form of inheritance occurs in 50 percent of first-degree blood relatives, for example, siblings or children of the AD person. Since this form of the disease develops between ages 30 and 60, and occurs in families, it is frequently called early-onset familial AD. It accounts for only 5 percent of Alzheimer's disease cases. The most common form of Alzheimer's occurs in persons who are 65 and older and thus it is called late-onset.

The only gene confirmed to be involved in late-onset AD is APOE. This apolipoprotein E gene has three normally occurring forms called alleles. These alleles are designated as 2, 3, and 4. Unlike the Alzheimer's disease genes on chromosomes 21, 14, and 1 that determine the early-onset form of the disease, apoE-4 (allele 4) acts as a risk factor, but not all people with apoE-4 get AD. In contrast, having apoE-2 is a protective factor, and people with this form of apolipoprotein E are not as likely to develop AD. ApoE primarily acts as a modifier of the age at which people develop Alzheimer's.

A number of other genes may be associated with late-onset Alzheimer's. Chromosome 12, for example, may have several genes that could provide some answers about what causes AD. While all of the genetic associations found in late-onset AD may not turn out to be risk factors, they illustrate that the emerging picture of what causes late-onset Alzheimer's is very complex. Genetic factors may have a role, but they do not provide all the answers to the Alzheimer's puzzle. Large differences in age of disease onset exist for identical twins. In some cases, the disease only affects one of them. These are two compelling facts that something besides genetics is involved. Environmental factors somehow play a part. In fact, the interaction of genetic and environmental factors may account for many of the differences in when and how the disease is expressed.

Symptoms in Older People Attributed to Other Causes

Because Alzheimer's disease was originally identified in persons under 60 and other causes were considered for similar symptoms in older persons, it was thought to be rare. It wasn't until the 1970s that several investigations led to the conclusion that Alzheimer's disease was accountable for the symptoms found in older persons (Katzman, 1976). Since then, we have learned the disease is the most common type of dementia found in this population. Less than 10 percent of people with AD are under 60.

The Statistics

Five million cases of Alzheimer's disease were expected in the year 2000 (Weiner, 1996). Worldwide it is estimated that 22 million people suffer from AD. The prevalence (number of people with the disease at one time) of the disease doubles every 5 years beyond age 65. It is estimated that about 360,000 new cases (incidence) will occur each year in the United States (Brookmeyer et al., 1998). Incidence increases significantly with age. For example, from 20 to 47 percent of those over age 85 have dementia, and Alzheimer's disease accounts for over 50 percent of these cases. The U. S. population of older people will increase substantially in the near future. The aging of baby boomers will be responsible for a substantial increase in persons with the disease in the next three to four decades. By the year 2040, 14 million people in the United States are expected to have Alzheimer's (Evans, 1990).

The prevalence of Alzheimer's is not uniform among racial and ethnic groups. Some research suggests that the risk may be higher for African Americans and Hispanic Americans than for Caucasians. More research is needed to determine the basis for these differences. They may reflect different roles of environmental and genetic risks for development of AD. Non-Caucasians are living longer and will comprise an increasing percentage of the aging population in the future, especially in the older age group most vulnerable to Alzheimer's. By 2050, the non-Caucasian percentage of the aging population over age 85 will have increased from 16 percent to 34 percent.

Alzheimer's is the most common neurological disease that causes dementia, a syndrome characterized by loss of intellectual capacities and impairment of social and occupational functioning. The incidence of the disease in women is higher than in men. The disease knows no socioeconomic boundaries. Life expectancy is reduced by approximately one-third after development of AD. People with AD live an average of 8 to 10 years after diagnosis. The disease can last for up to 20 years. The rate of deterioration and severity varies.

Alzheimer's disease is the fourth leading cause of death in the United States, killing more than 100,00 people annually. But respiratory conditions, congestive heart failure, and infections, which develop in the late stages of the disease, are often given as the cause of death and make this fact less striking.

Cost of Alzheimer's Disease

Alzheimer's care is estimated to cost the United States more than $100 billion a year (Weiner, 1996). The estimated annual cost of caring for a person with mild AD is $18,408; for a person with moderate AD, the cost is $30,096. The cost for caring for a person with severe AD is $36,132.

The cost experienced by the individuals directly affected by Alzheimer's goes deeper. People with Alzheimer's lose touch with the lifestyle and relationships that have been a source of identity and self-esteem. For the sake of safety, they may be required to relinquish some responsibilities prematurely, which can result in boredom, inactivity, and a greater sense of self-loss. With the appropriate opportunities, people with AD can be more meaningfully involved in life.

Family caregivers-- who provide the majority of Alzheimer's care-- suffer substantial and immutable negative effects on their physical and mental health. Often they suffer a loss of self because caregiving engulfs their entire life.

Table of Contents

Special Acknowledgmentxv
Part IThe Caregiver Experience1
1What Is Alzheimer's Disease?3
A Case History3
Early Detection and Treatment5
Causes of Disease--Multiple Factors6
The Statistics8
2Symptoms and Phases of Alzheimer's Disease11
Symptoms of Alzheimer's Disease11
Phases of Alzheimer's Disease23
Stage IEarly Confusional Phase24
Stage IILate Confusional Phase25
Stage IIIEarly Dementia26
Stage IVMiddle Dementia28
Stage VLate Dementia31
3Depression and the Person with Alzheimer's Disease33
Risk Factors for Depression35
Signs and Symptoms of Depression36
Depressive Symptoms and Disorders39
Causes of Depression with Alzheimer's Disease46
Treatment for Depression48
Grief and Coping54
4Possible Causes of Alzheimer's Disease59
What Does Not Cause Alzheimer's59
The Genetic Theory60
The Viral Theory63
The Immune System Theory64
The Aluminum Theory65
Psychosocial Factors and Dementia65
5Six Common Myths About Alzheimer's74
Myth 1Alzheimer's Symptoms Are a Normal Sign of Old Age74
Myth 2Senility Is the Usual Cause of Problems in Old Age75
Myth 3Nothing Can Be Done for the Person with Alzheimer's77
Myth 4Alzheimer's Is Strictly a Mental Illness77
Myth 5Only the Family Should Care for the Person with Alzheimer's78
Myth 6All Relatives of People with Alzheimer's Are Likely to Inherit the Disease79
6Coping: A Step-by-Step Guide to the Caregiver's Experience82
A Hypothetical Case History82
1.Noticing Initial Symptoms83
2.Confirming Suspicions84
3.Seeking Information85
4.Taking Action85
5.Weighing Findings86
6.Identifying Resources86
7.Planning Care87
8.Managing Caregiver Stress88
7From Family Care to Alzheimer's Care: Preparing for Caregiving92
Differences in Alzheimer's Caregiving and Traditional Family Care98
Coping with Problems Common to Chronic Disease100
Motivations for Helping111
8Understanding Behavioral Changes114
Early Threats to Who We Are115
The Impact of Losses on Relating115
Attempts to Understand Behavior116
Revising Your Expectations117
Questioning Old Beliefs About Behavior119
Emotions and Alzheimer's Behavior124
Emotional and Behavioral Communication126
Behavior and Stress128
Catastrophic Reactions129
Excess Disability131
9Stages of Family Adjustment134
Accepting the Disease134
10Family Responses to Care143
Need for Family Support143
Compatible vs. Conflictual Families144
New Views of Parent147
Cohesive vs. Fragmented Families147
Productive vs. Nonproductive Families147
Fragile vs. Stable Families148
Family Roles and Rules149
Family Roles During Crisis151
Caregivers and Caregiving154
11Values, Beliefs, and the Caregiver Experience160
Expectations Influence Our Feelings and Reactions160
12How to Respond Positively to Alzheimer's Behaviors164
13Depression and the Alzheimer's Caregiver183
How Common Is Caregiver Depression?184
Reasons We Fail to Recognize Depression185
Depressive Disorders186
Generalized Anxiety Disorder189
Risk Factors for Caregiver Depression190
14Coping with Ongoing Caregiver Stress200
Learning to Analyze and Manage Change200
Stressors, Stress, and Coping202
Responding to Thoughts and Stressors205
Stress and Self-Talk207
Irrational Beliefs Cause Stress208
Coping Model211
Different Types of Stress214
Manifestations of Stress215
Coping Examples216
Coping Approaches for Different Stressors217
Twelve Steps for Caregivers222
15Exploring Community Resources224
Drawing upon Community Resources Reduces Strain on the Caregiver224
Community Resources for Alzheimer's Care227
Considerations for Nursing Home Care229
Final Resource Considerations234
Part IIResearch and Treatment237
16Abnormal Changes in the Brain239
Physical Changes in the Brain240
Anatomy of the Brain241
Neurofibrillary Tangles242
Senile or Neuritic Plaques247
Granulovacuolar Degeneration250
Hirano Bodies252
Congophilic Angiopathy253
Chemical Changes in the Brain254
More About Brain Anatomy254
The Cholinergic System257
The Serotonergic System259
The Noradrenergic System260
The Glutaminergic System261
Treating Neurotransmitter Deficiencies262
17Treatment Possibilities264
Role of Drugs in Alzheimer's Treatment264
Should You Participate in Drug Research Study?266
Inconsistencies in Drug Studies266
Cholinergic Agents268
Available Cholinesterase Inhibitors270
Cholinergic Receptor Agonists273
Naloxone and Naltrexone274
Vasodilators and Nootropic Agents274
Glutaminergic Agents276
Combination Drug Studies277
Estrogen, Anti-Inflammatory Agents, and Antioxidants278
Neuronal Transplants281
18Psychiatric Medications and Dementia283
Side Effects285
Major Tranquilizers (Neuroleptics or Antipsychotics)286
Minor Tranquilizers287
An Afterword291
Appendix AWorksheets293
Appendix BSelf-Help Groups and Organizations That Can Help309
Appendix CInternet and World Wide Web Resources315

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