Analyzing New Treatment of Alzheimer’s Disease

October 14, 2007

When announcements of a new treatment or a new “breakthrough” appear in the media, readers/listeners must take care to analyze them in order to properly assess the claims being made and to sort the pertinent information from the extraneous verbiage used to catch consumer attention. Several points should be kept in mind to avoid false expectations on the part of patients and family members. First, one must not be misled by headlines that are created to call attention to a story. Words used in headlines are specifically calculated to heighten consumer interest. In the Time magazine article, New Hope for Alzheimer’s Victims, the wording was selected to entice those with any interest in the disease to spend the time to read what this new hope was. More recent articles may not have the sensational wording, but still entice readers to read farther. Estrogen cuts risk of Alzheimer’s disease and a new test, using eye drops, could be a breakthrough put a spin on the headlines and lead paragraph that encourages high and hopeful expectations if the articles are not analyzed with a critical eye.

In both popular articles and scientific reports, readers should take special note of all disclaimers and qualifiers used to describe a “breakthrough” or the new finding being disclosed. The Time article was replete with such disclaimers and qualifiers, for example, the article stated that “Alzheimer’s finally appears to be yielding to treatment”, a new biochemical test may prove to be highly reliable in detecting a collection of molecules found only in patients with the illness, scientists expect to develop a test (to detect Alzheimer’s disease from spinal fluid). Tacrine, a drug that supposedly slows the loss of brain function and could conceivably add one or more productive years to the lives of Alzheimer’s victims. The Newsweek article describing the eye drop test stated that this was the first simple and apparently accurate test for the disease. U.S. News and World Reports stated that aspirin and other nonsteroidal anti-inflammatory drugs, used regularly may reduce in the risk of mental decline in old age by 20 percent.” The importance of such qualifiers is frequently overlooked by Alzheimer sufferers and family members who are grasping for any sign of hope, for some positive information in their search for effective treatment and cure of Alzheimers. Estrogen, according to U.S. News and World Reports, could lower risk of developing Alzheimer’s, but went on to qualify the article by stating that because of possible side effects, researchers still had reservations about the use of estrogen to prevent Alzheimer’s.

In addition to paying close attention to the manner in which a story is worded, readers/listeners should also consider the source of the story. The veracity of the source should be considered: Is the news source known for accurate and competent reporting or does it have a reputation for sensationalizing stories in order to gain attention? Evaluate, if possible, the source of the news article. Is the story from a national news service or the result of local reporting? Is it paraphrased from the original source? Try to determine if the person presenting the results is an expert in the field, with firsthand knowledge of the story, or if the report is a summary of a more detailed paper written by someone else. Analyze whether the reporter specializes in reporting medical news or is someone who reports general topics. Consumers can call or write the news source and ask for more details concerning the reports they choose to analyze.

If possible, find out where the information was reported or originated. Try to determine if it is the result of a controlled study in a major medical center specializing in the particular research area or if it is an isolated report from a small group or from a single investigator. The background of the investigator reporting the results may be significant: Is this person someone who specializes in the area and has done previous work on the subject, or is the researcher new to the field? Ascertain the person’s experience and standing among professional peers. Although some breakthroughs may certainly come from a small medical center recently embarking on research in a particular area, chances are that major findings would come from research centers with a history of competent work that investigates the subject.

Examine the procedure utilized to obtain the results reported. Ask if the particular report discusses an original study or describes a replication of some previous study. Look at the number of patients participating, the length of the study, and whether it was an open study or a blinded one. Consider if the study has been reported in the scientific literature prior to publication in the popular press. If the material has appeared in the scientific literature, ask if the particular publication in which it appeared is “peer reviewed,” that is, whether other competent scientists in the field reviewed and critiqued the material prior to publication.

There may be a delay of many months between the time data are presented at a conference, submitted for publication, and actually published as an article in a scientific journal. During this period, if the information is deemed newsworthy, the popular press may publish a version of the findings. Consider, however, if the findings have been presented to a scientific meeting prior to publication and if the results of the study are available. Frequently the media choose to publicize what they consider to be the most exciting, the most favorable, and the more enthusiastic reports, while ignoring less favorable or negative studies. Enthusiastic reports may make a better story but negative results can be just as important in the study of a particular disease. It is here that the experience and expertise of the reporter may influence the information selected for the news report. The selection of information may determine whether the subsequent report is accurate or results in mistranslating or misunderstanding

of the data actually presented.

The news report may be so worded as to create a false impression of what has been presented. This may be done inadvertently, by leaving out important facts and selectively reporting those that seem to be most exciting, or it may be done in order to catch the listener’s attention. In either instance, a false impression can be created.

Judge the slant given to the news report. Look for comments on the particular study from experts and consider if the various experts have been quoted at length or if the quotes have been severely edited such that the report is given a certain slant or bias making it sound more favorable and thus more exciting as a news report. Uncritical media reports may lead to confusion, they sometimes create a false public impression of what has actually been demonstrated.

When analyzing a report of some scientific finding, it is important to consider personal biases toward the subject. Do readers/listeners want to perceive the report as more favorable than it actually is? Do readers/listeners selectively retain only what is wanted: those bits of information that are positive and perhaps offer more hope than some others? In selectively retaining portions of the material presented, they may create in their own minds false expectations and thereby mis-translate what is in fact said.

Once readers/listeners have analyzed the validity of the report, they must assess the impact of the information. For example, if a new drug treatment is reported, they should look for its availability to the general public. Is the drug still in an experimental stage? Is the report preliminary or a long-term summary? Has the drug been tested long enough to determine its side effects? Determine if the drug is or soon will be available to the public and, if so, how readily available it is. If the treatment is not available, inquire as to whether application for marketing has been made. When such reports reach the popular press, interested persons should ask their doctors about the drug family physicians or internists may have knowledge, and in any case they are good sources of information. Frequently doctors have access to the original report or to relevant data and are able to interpret the results more accurately.

Recently another source of information for Alzheimer research has burst on the scene and the information available multiplies daily. The Internet has become easily accessible to the general public as a source of an immense body of information. The Internet is a vast computer network allowing virtually anyone with a home computer and the proper software to obtain information from anywhere in the world. Not only does one have access to information published in the popular press, but also to scientific publications and reports.

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Memory Tests As Diagnostic Criteria

October 8, 2007

As we have seen, many episodic and semantic memory tasks distinguish dementia problems from minor memory problems associated with normal aging. Many of these kinds of items are part of existing diagnostic tests, such as the “Mini-Mental State” exam, developed by Marshal Folstein and others at Johns Hopkins University. Many researchers are working to develop language, memory, and other behavioral tests that more accurately discriminate Alzheimer’s disease from other dementias. For example, Eileen Grist and Jane Maxim at Frenchay Hospital in England have developed the Build-up Picture Test for differentiating dementia from normal aging.A reality monitoring test may be a useful addition to our current battery of assessment tools, as this test may tap memory problems that can lead to potentially life-threatening situations, such as forgetting to turn the stove off. Families with Alzheimer patients living at home should be attentive to situations that involve reality monitoring, such as locking doors, leaving appliances on, taking medications, and writing checks. Signs (e.g., Is the stove off? by the front door) and other external reminders (e.g., one box labeled for medicine not yet taken, another for medicine already taken) may be helpful.

Since many of the current medical tests are so expensive and are primarily useful only for exclusionary purposes, it behooves researchers to continue searching for simple behavioral tests that can help to positively identify dementia of the Alzheimer’s type. Some of the priming memory tasks may prove to be useful for assessing what an individual’s level of functioning was prior to the onset of the disease. Additionally, the combination of behavioral and the latest “high-tech” brain tests (e.g., PET, MRI, cerebral blood flow, and event-related potentials) may provide greater accuracy in diagnosis. Although there is no cure available at this time, early identification is a worthwhile endeavor, given its success in dealing with other diseases and the possibility of some kind of treatment.

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Evaluation Of Dementia Persons

October 1, 2007

Persons who develop symptoms of dementia should undergo a medical evaluation for treatable causes. Even if a treatable form of dementia is not found, it is advantageous to establish a diagnosis because this makes it possible to predict the course of the particular illness.

The evaluation begins with a history of the illness and is usually obtained from a family member or close friend since the demented individual is no longer capable of providing accurate information. For diagnostic purposes the physician will be very interested to know when symptoms began to occur certain diseases, such as Alzheimer’s disease, have a slow and insidious onset. Rarely is it possible for the family member to date precisely the beginning of this dementing illness. In contrast, symptoms may have arisen quite suddenly if the patient has a disorder such as liver failure, kidney failure, or drug overdose.

The course of the dementing illness, or the rate at which symptoms become more severe, is also meaningful. In the case of Alzheimer’s disease, the course is invariably slow and progressive. Alzheimer’s disease will usually progress for several years prior to becoming severe enough that the family will seek medical attention. The victim may in the early stages have a tacit awareness that something is amiss, although frequently the affected person is without any appreciation of these potential problems. So-called multi-infarct dementia is caused by serial strokes. Unlike Alzheimer’s disease, this form of dementia presents a pattern of step-by-step progression punctuated by the occurrence of multiple strokes. In between the strokes victims may actually improve slightly.

The history of fluctuations in alertness is also helpful. The Alzheimer victim will normally have an alert level of consciousness. In contrast, persons suffering from liver failure, kidney failure, drug overdosage, blood clots on the brain (subdural hematomas), electrolyte imbalance, or infections of the nervous system will typically have fluctuating periods of alertness and sleepiness.

In addition to a medical history, both general and neurological examinations should be performed. Their purpose is to find impairment of organ systems or evidence of localized brain disease. For example, the physician may find evidence of liver or kidney failure (fluctuating level of consciousness, flapping type of tremor of outstretched hands, and unusual odor). The physician may also find evidence of localized disease.

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Elimination Problems for the Alzheimer Patient

September 26, 2007

Disorientation, impaired neurological functioning, and inability to locate the bathroom may create elimination problems for the Alzheimer patient. It is important to note changes in bowel habits, such as constipation or diarrhea, dribbling, or incontinence. It is also advisable to monitor fluid intake very carefully because of its effect on elimination.

Methods used to facilitate Mr. Jones’s elimination included identifying the bathroom with a sign or a picture and providing adequate lighting at night to assist him in locating it. Mr. Jones was observed for restlessness and for other cues that indicate he might need to go to the bathroom; he was urged to go at frequent intervals (i.e., every four hours). He was encouraged to drink at least eight glasses of fluid during the daytime, but his fluid intake was limited before bedtime to reduce incontinence. Ms. C. was asked to look for swelling in his hands and feet. She was told to consult his doctor should this occur because it might mean he was retaining fluid.

To avoid constipation, laxatives or stool softeners were provided as needed. Since Mr. Jones wore adult diapers, because of urinary incontinence, the need to change them often was stressed, as was the need to apply lotion or powder to prevent skin breakdown.

Methods Of Improving Elimination

• Identify the bathroom with a sign or a picture.
• Provide adequate lighting, especially at night, to assist in locating the bathroom.
• Encourage the person to go to the bathroom at frequent intervals (i.e., every four hours).
• Encourage drinking at least eight glasses of fluid during the daytime, but limit fluids before bedtime to prevent incontinence. Consult a doctor if swelling of feet and/or hands is noticed.
• Observe the patient for restlessness and other cues that he or she may need to go to the bathroom.
• Provide laxatives or stool softeners as appropriate to avoid constipation.
• If adult diapers are worn, they should be changed often and lotion or powder applied to prevent skin breakdown.

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Evaluation For Treatemnt Of Dementia

September 24, 2007

Large numbers of patients presenting symptoms of dementia have been evaluated to determine the frequency of treatable forms. These studies have found that from 10 to 20 percent of persons with symptoms of dementia have underlying diseases for which specific treatments exist. It is the physician’s first responsibility to identify those individuals with potentially reversible forms of dementia. Though the cost of performing a medical screen is not cheap, this examination is substantially less than the cost of a nursing home. In addition, the possibility of finding a disease which, if treated, would return the patient to a more normal mental state fully warrants the cost and the effort.

Useful Laboratory Tests

Following the history and physical examination, a battery of laboratory tests is performed, the purpose of which is to gain additional diagnostic information. The laboratory tests may have been prompted by the history or the physical examination, or they may simply be conducted to exclude the possibility of a particular disorder. Llaboratory tests that may be used to uncover more treatable forms of dementia.

Other laboratory tests such as cerebral angiography, skull X-rays, serum ammonia, scinticisternography (a radioactive agent is injected into the spinal fluid to determine if occult hydrocephalous exists), and nuclear brain scans may be performed.

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Depression And Anxiety for long Term Care Givers

September 22, 2007

Other interesting studies have consistently found that long-term care givers are at risk of high levels of psychological distress, leading in some cases to psychiatric disorders such as major depression disorder and generalized anxiety disorder, which generally require treatment. Major depression is more than just feeling sad or blue for a few days. It is a serious condition that leaves the individual feeling a loss of pleasure in all activities and pastimes which persists relentlessly over time. The depressed individual may have a poor appetite or significant weight loss, which may complicate health issues in the elderly. There may be disturbances in sleep, loss of energy, fatigue, feelings of worthlessness and guilt, diminished ability to think or concentrate, and sometimes recurrent thoughts of death or suicidal ideation.

Depression may not be readily apparent in the older caregiver. EI-derly depressed individuals may not describe themselves as being depressed, preferring instead to suffer silently. They may not be inclined to speak of feelings of despair, poor self-esteem, and worthlessness, and may be less inclined to complain of guilt. Instead, the elderly caregiver may be more likely to complain about feeling tired, loss of energy, sleep lessness, poor appetite, or a vague array of physical problems. The depressed elderly are less prone to tears and may be more likely to express their depression by appearing irritable. It is important to diagnose and treat depression. It can be a fatal disorder, and it is a tragedy for the caregiver to suffer when treatment can greatly relieve the distress and discomfort of depression.

Research studies have reported rates of depression which vary from 10 to 50 percent of the caregivers studied. One study at the University of Washington found that spouse caregivers who have a prior history of psychiatric disorders such as major depression or generalized anxiety disorder were significantly more likely to develop a major depression or other psychiatric disorder while caring for their Alzheimer spouse than did caregivers without a prior history of a psychiatric disorder. Also interesting were findings that the caregivers who had a prior history of depression or anxiety were twice as likely to suffer recurrences than members of the control group who were not Alzheimer caregivers, but who did have a prior history of depression or anxiety.

It will be important to assess carefully and realistically the capacity of the caregiver to provide care. This will need to occur at several points throughout the course of the illness. The person providing care may be successful at managing the patient early in the illness, but as demands increase and the primary caregiver attempts to do more and more, reevaluation of the caregiver’s health and resources becomes very important, otherwise it may well be necessary to provide medical care to the care giver as well. This is especially true for caregivers who have a history of depression and anxiety. Fortunately, depression is a disorder which can be treated with good results. By ensuring that the caregiver has sufficient support, someone to confide in, and plenty of time off, depression may be prevented. If depression is caught and treated early, the caregiver will have much greater physical and emotional strength to cope with the demands of this disorder and may delay the need for nursing home care.

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Communication or Language Problem

September 19, 2007

As Alzheimer’s disease progresses, language problems become more evident. The patient may ramble on, almost incessantly, in what may appear to be irrelevant, disorganized, repetitious, and fragmented sentences. In more advanced cases the patient may mumble unintelligible phrases or remember only a few key words which may be used in appropriately. Eventually the patient may be unable to speak at all. For most families, the patient’s loss of effective speech is the most upsetting of all the Alzheimer symptoms. While confusion and memory loss may frustrate the family, the demented individual may still be perceived as the “same person.” It is when Alzheimer patients have lost the ability to speak that families experience their loved ones as different from the persons they once knew. The family may believe that thoughts and feelings can no longer be shared with the patient; this may lead to fears that the patient experiences suffering without being able to communicate it.Family members who are concerned about such issues must remember two important points. First, the severity of the patient’s language impairment may not be an accurate indication of the degree of dementia. The symptoms and presentation of Alzheimer’s disease may take many forms. In some patients, deficits in language may occur early in the illness, yet for other patients, language may remain relatively intact, while attention span, memory, or visualspatial reasoning and coordination may be impaired.

Patients who have trouble vocalizing and producing logical speech may give the false impression that they are stupid or very impaired. Conversely, one might erroneously assume that if persons can repeat spoken instructions or read a set of directions, they should be able to carry them out. Not infrequently, such patients are judged to be cantankerous for not following directions (e.g., to eat or take medication at a certain time), when in fact they have severe problems in comprehending or executing directions. The second point to keep in mind is that spoken words are only part of a communication process. Patients with Alzheimer’s disease may communicate their needs and feelings through nonverbal means (i.e., facial expression, body posture, and actions).

Families concerned about communication problems in the Alzheimer patient should first have auditory (hearing) and visual (seeing) perception and acuity tests performed, providing corrective devices (i.e., hearing aids or glasses) when appropriate. Families may also opt to have a speech therapist evaluate the Alzheimer patient who exhibits language problems. Such an assessment can help the family understand the type of speech disturbance the patient is experiencing, and also provide them with tips on how best to communicate with their loved one. The following are some general considerations to keep in mind when communicating with the Alzheimer patient who has language problems.

Communication Aids for the Alzheimer Patient Who Has Problems Understanding Others

The Alzheimer patient has difficulty in correctly understanding what is going on in the surrounding world. First, older people in general have many more problems with their vision and hearing, which can cause confusion and uncertainty. Alzheimer patients have an added difficulty: they must make sense of (Le., identify, organize, and process) the information that does reach their senses. This obstacle is compounded by difficulties pertaining to attention span, concentration, and memory. A demented person may be able to repeat verbal instructions or read written directions without necessarily understanding, remembering, or being able to act upon them. Similarly, the patient may be able to understand a statement when delivered face-to ­ face, but fail to comprehend what is said over the telephone.

The following suggestions should be helpful in communicating messages to the Alzheimer patient -

1. Make certain the patient hears you by speaking loudly (but not so loud as to frighten), standing face-to-face, and maintaining eye contact.
2. If you do need to raise your voice to be heard, lower the tone (pitch). A high-pitched voice may suggest to the patient that you are upset. The tone of your voice should always reflect calmness, reassurance, and the sense that you are in control of the situation.
3. Use overemphasis and exaggerated facial expressions to stress your point. Hand gestures and pointing to objects can be very beneficial in conveying a message.
4. Distracting or competing noises and activities should be eliminated. Alzheimer patients experience tremendous difficulty sorting out stimuli and focusing their attention.
5. Use short words and simple sentences (no more than four words) conveying only one message or thought.
6. Begin each sentence by addressing the patient by name and by identifying yourself if necessary. Use only nouns; avoid the use of pronouns (e.g., it, she, they).
7. Ask only one simple question at a time. Do not include complex or multiple choices in a question (e.g., “Do you want to visit John or Cousin Sue, or wait and go shopping later?”). If you must repeat a question, attempt to repeat your words exactly.
8. Break each task into simple steps and ask the person to do one step at a time. Most of the things that we ask the patient to do (e.g., get dressed, take a bath, brush teeth) are actually composed of a number of sequential tasks. The Alzheimer patient may not be able to sequence the events.
9. Speak slowly and wait for the person to respond. What seems like a long and unproductive silence to you may ret1ect the Alzheimer patient’s attempts to concentrate, comprehend, and formulate a response. If the response does not come in one or two minutes, repeat your question exactly.
10. Use humor in your communication whenever appropriate and encourage the patient to express humor, especially in difficult and trying situations.
11. Even with patients who have severe language problems, do not assume that the patient never understands you. Abilities fluctuate and it is inconsiderate and demeaning to talk in front of the patient as though he or she were not there.

Communication Aids for Patients Who Have Trouble Expressing Themselves

Alzheimer patients frequently have considerable difficulty expressing themselves, which can lead to feelings of frustration in both the patient and the family. Such problems in communication may precipitate an emotional outburst in the patient (e.g., bursting into tears or storming out in a fit of anger), because it is felt that no one understands. How you attempt to help the demented person’s self-expression will depend upon the type of difficulties the patient experiences as well as his or her personality and temperament.

For instance, some patients who suffer from anomia, or difficulty in naming things, may become quite annoyed and even angry if a caregiver intervenes to provide the correct word. Such patients may find it hard to accept their disabilities and their increasing dependence upon others. Some patients may feel less frustrated and be appreciative if they are sup­plied with the correct word rather than left on their own to search and struggle for it. If the patient has used the wrong word and you are not certain what is being talked about, you may ask that the object be pointed out and described.

At other times, the only way to determine what a patient is trying to communicate is to make a series of guesses. In some cases this may require taking into consideration not only the words the patient has provided, but also the manner in which they are presented (e.g., anxiously concerned, assertive and demanding, nervous and restless). For example, a patient may constantly make some inquiry about food. Efforts to explain when the next meal might arrive or describing the menu seem not to alleviate the concern. Such a patient may be expressing fears of being cared for properly and the need for reassurance.

For patients who can say only a few words, or shake and nod their heads, it is necessary to set up a regular routine and a standard set of questions for checking on their well-being. If these patients appear to be in distress. go through a checklist of what might be ailing them, proceeding slowly and checking on one point at a time (e.g., Are you hungry? Are you cold? Do you need to use the bathroom?). Point to body parts rather than naming them (e.g., Does this hurt?). The key points to remember are: convey your patience and concern to the demented person, and check each of your guesses with the patient to determine their correctness.

Nonverbal Communication

Much of this section has made reference to the manner in which the caregiver and the patient may communicate without the use of spoken language (i.e., through posture, gestures, and facial expressions). This type of communication actually goes on all the time even when speech is used (e.g., avoiding eye contact when ashamed, tensing body posture when angry, tapping the hand or foot in impatience). It is extremely important for the family member to read or interpret what the patient’s behavior is conveying, and to also be aware of the nonverbal messages that are sent to the patient.

In communicating with the Alzheimer patient, first determine if the patient is receptive and listening to what is being said. The receptive, attentive patient will appear relaxed in facial expression and in muscle tone, will extend a hand or offer verbal greeting, will smile and nod to statements, will sit or stand still, will maintain eye contact, will lean forward or cock the head to one side to hear better. A nonreceptive listening patient turns away from the speaker, avoids direct eye contact, does not nod in affirmation or ask questions for clarification, may appear confused, appears restless or walks away, frowns, has general body muscle tension, fidgets or shakes, may appear anxious, or pulls away from physical contact. If the patient appears to be nonreceptive because of some negative emotional state (e.g., fear, panic, or anger), it may be best to leave him or her alone rather than risk escalating feelings. You may want to let the patient know that you realize he or she does not want to talk now and that you will return later. Never try to force a patient to do something.

The following are some suggestions on how to increase your ability to express yourself with the nonverbal patient -

1. Caring for the Alzheimer’s patient can generate chronic feelings of fatigue and frustration. You must be careful, however, not to convey these feelings through body language, as they may upset or agitate the patient. Strive to maintain a calm exterior and remain pleasant and supportive.
2. Even a severely demented and non-communicative patient needs affection. Smile, hold the patient’s hand, place your arm around the person, or provide an occasional hug.
3. Touching can also be a more direct and effective technique for communication, e.g., redirecting the patient back to the task at hand, inhibiting an undesirable response, or calming and reassuring the patient.
4. Look directly at the patient, and sense the person’s receptiveness, if necessary hold off on your communication until later when he or she is more able to listen
5. Use gestures, point, touch, and hand the patient objects. Use pantomime or direct action for purposes of demonstration and imitation (e.g. brushing the teeth).

Communication with an Agitated Patient

A final and important point concerns how to recognize growing agitation and negative emotion in a patient. Frustration, fear, hostility, and aggression in the Alzheimer patient may be communicated through general increase in body movement and agitation, such as restless, rapid pacing; kicking doors or rattling door knobs, pushing furniture about, making firsts or waving arms, Facial changes, such as grimacing, frowning, or darting eyes; changes in voice, such as an increased volume, speech, and tone and physical changes, such as rapid breathing, widening of the eyes, dilating pupils. and tightening of muscle tone. When a patient demonstrates such signs of agitation, approach the person with calmness and reassurance, reduce the surrounding stimulation (e.g. turn off the television or radio, and have others move away), remove dangerous objects from the area; do not pressure the patient or make additional demands, and make certain that all your communications, both verbal and nonverbal language. are consistent. In such stressful situations, the patient’s memory loss may work to your advantage. Distracting the patient or removing the individual from the situation may make it difficult for him or her to remember what was so upsetting.

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What Support Group Can Provide for Alzheimer Families

September 17, 2007

A moving story of a woman thrust into the role of care­giver. It is the story of a woman, perhaps like you, who came home one day from the doctor’s office after learning that her life would soon become very different, but without much understanding of what to expect.Mrs. Smythia and her family experienced the anger, frustration, and fears that most Alzheimer families face, but this particular family mobilized their strong feelings and put them into action. As a result of their efforts, in combination with other dedicated families in their community, a dynamic support group developed where none had existed before. This chapter not only provides inspiration, but also important ideas on how a support group can benefit its members.

At the age of thirty-two, I became a victim of Alzheimer’s disease. My husband and our three children-then aged five, two, and six months­also became victims. No, we were not diagnosed as having the disease, but my husband’s mother, Margaret, was. We became her caregivers, and we were to become victims as much as she. Our lives were drastically changed the day my mother-in-law came to live with us. I will tell the story of how we became caregivers, not because our story is unique, but because it is so common. What happened to us and the emotions we felt have happened to millions of other caregivers. I hope that a better understanding of these circumstances will underscore the need for support groups and support services to help Alzheimer families cope with their situations.

We had known there was something wrong with Mom for a long time. In the beginning, she also realized that something terrible was happening. At the time of their respective deaths, Margaret’s mother and grandmother had both suffered from senile dementia. Mom feared that she, too, was becoming senile. She talked to her husband and to us about it; she even discussed it with her doctor. None of us knew anything about Alzheimer’s disease. We told Mom not to worry. After all, she was a healthy woman in her fifties who had watched her diet. How could she possibly have “hardening of the arteries”? So Mom worried, and we reassured. But after a while, she stopped worrying. In fact, she denied being forgetful when she clearly was. That is when we began to worry.

At the time of this crisis, Mom lived 400 miles from us and was married to a very nice but older man. Both had been widowed and had married more for companionship than for love. Now, however, Mom was not a very good companion, and her husband was not able to carry her responsibilities as well as his own. He let us know that he wanted Margaret to live with us. He was making plans to leave her. Within a week, Mom had moved into our three-bedroom home. Soon after the move, Mom and Dad were divorced. It was not long thereafter that Mom was diagnosed as having Alzheimer’s disease.

Becoming a parent to a parent is one of life’s saddest and most difficult experiences. It is even more traumatic when the parent has Alzheimer’s disease. Mom grieved so much after she came to live with us. She could not fully comprehend what was happening. Nor could she understand why her husband had rejected her and had wanted a divorce. She didn’t want to live with us; she wanted to be in her own home, in her own church, with her own friends. She rejected our efforts to help her. A very proud and independent woman, she resented being taken away from her home. Day after day we explained why she was living with us. Day after day she cried, longing to go home.

I also grieved. I longed for the simple, uncomplicated life our family had enjoyed before becoming caregivers. I cried. I cried for what was happening to my sweet mother-in-law and for how I felt having to tell her time after time that she could not go home. I cried from the feeling of not having any control over my life. Alzheimer’s disease had taken over my own life and had destroyed my freedom. I cried for the future. For the first time I realized what Mom would become and what our future as caregivers would become. The greatest unspeakable fear concerned my husband and my children. Since Alzheimer’s disease tended to develop in his family, would he become a victim too? I would look at my three beautiful children, so full of life and so bright, and wonder if their lives would end in a mindless state of dementia. It was as if a monster lived in our future, waiting to devour the people I loved more than life itself. How could I be certain that a cure would be found in time? I couldn’t.

After weeks of carrying these burdens, I decided I could no longer continue along this path of self-pity and depression. I knew that if I was to survive, I would have to fight back. I had read about support groups, but there were none in our area, nor did I know another person who might be interested in a support group. But I knew there must be others like myself who needed to talk to someone who was also a caregiver. I had been frustrated by the lack of readily available information about the disease. Perhaps a group of caregivers could share information. After thoroughly discussing the possibilities with my husband, we decided to start our own support group. It was the first positive step we had taken since our family had become caregivers. For the first time, we felt that something good could come from our misfortune, something that would bring meaning to our struggle against this disease.

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Requirements for Alzheimer’s Patient

September 13, 2007

Fiber

The many different types of fiber are divided into soluble and insoluble fibers. Both types of fiber are necessary for good health. Dietary fiber has been related to many health conditions. Fiber may be beneficial in cases of constipation, diarrhea, diverticulitis, cardiovascular disease, colon cancer, and diabetes. However, one should be cautious in assuming that dietary fiber is the only factor involved in these conditions.

The best way to increase fiber in the diet is from food sources. These sources include fruits, vegetables, whole grain breads and cereals, dried peas and beans, nuts, and seeds. Cooking, processing, and removing peels can reduce the fiber in foods. There is no Recommended Dietary Allowance for fiber. However, the American Cancer Institute recommends 20 to 30 grams of dietary fiber each day. It is important to check with your physician about fiber in your diet. Fiber intake may have to be modified in older adults who have problems with chewing, swallowing, or other medical conditions.

There are some tips to consider when increasing fiber in your diet. Increase fiber in your diet slowly. Increasing fiber too rapidly may cause unpleasant side effects such as bloating and gas. Since fiber absorbs water, it is important to drink plenty of fluids when increasing dietary fiber. Too much dietary fiber can decrease mineral absorption. It is possible to get too much fiber with concentrated fiber supplements. Adequate dietary fiber can be obtained from foods without using fiber supplements.

Fat

Fat is a nutrient that gives us energy. Fats are the most concentrated source of food energy, providing nine calories per gram. Fat helps form cell membranes and carries the fat-soluble vitamins A, D, E, and K. Fat also provides the essential fatty acids that the body cannot make. Although fat is important in our diet, many adults eat more fat than they should. High-fat diets are considered a risk factor for heart disease, cancer, and obesity. By increasing the risk of obesity, high-fat diets may indirectly increase your risk of adult onset diabetes and high blood pressure.

The American Heart Association recommends that 30 percent or less of your calories come from fat. This is about 65 grams for a 2,000-calorie diet. When trying to lower fat in your diet don’t omit meats and dairy products. These foods contribute to a well-balanced diet. Choose lean meats and low-fat dairy products, use low-fat preparation methods, and watch your portion size to reduce the fat content of these foods. Limit your use of added or hidden sources of fat that don’t contribute nutrients to a well-balanced diet. Some examples are margarine, oils, salad dressings, chips, snack foods, and high-fat bakery items.

Water

Water is more critical to life than food. Lack of water will result in death sooner than will lack of food. The sensation of thirst tends to decline with age. As a result, despite the availability of fluids, many older adults become dehydrated. Adults need six to eight cups of water each day. Water can be taken in many forms such as water, fruit juice, milk, soups, coffee, tea, or soft drinks. Because caffeine acts as a diuretic and can cause fluid loss, decaffeinated beverages are recommended instead of caffeine beverages for fluid replacement.

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Possible Causes Of Alzheimer’s Disease

September 10, 2007

The cause for Alzheimer’s disease is unknown. The ultimate solution for the many problems that result from this disorder is to find the cause and to prevent the disease. At present several intriguing possibilities exist.

The Unconventional Virus Hypothesis

The strongest evidence linking Alzheimer’s disease to an unconventional “slow” virus infection results from the discovery that other rare neurological diseases previously thought to be degenerative in nature have now been shown to be caused by transmissible virus like agents. The rare neurological diseases that now fall into this category consist of Kuru, Scrapie (a disease of sheep), and Creutzfeldt Jakob disease. Kuru and Creutzfeldt-Jakob disease both eause dementia in humans. Transmission experiments have been carried out which consist of taking a Kuru, Scrapie, or Creutzfeldt-Jakob brain and injecting the filtered tissue into the brains of animals. These experiments have demonstrated, after a latency of many years, that the neurological disease could be transmitted to the animal.

Substantial effort has been expended in an attempt to transmit Alzheimer’s disease to nonhuman primates, such as chimpanzees, but without success. Some investigators believe that failure to transmit the disease may result from an unsuitable host; they do not believe that the inability to transmit precludes the possibility that Alzheimer’s disease is caused by an unconventional viruslike agent.

What does seem clear is that persons exposed to Alzheimer victims do not have an increased chance of developing the disease. Although special procedures are necessary for handling the blood and cerebrospinal fluid of patients with Creutzfeldt-Jakob disease, no such precautions are deemed necessary for Alzheimer’s disease.

The Genetic Hypothesis

Alzheimer’s disease is not a strongly genetic disorder such as diabetes mellitus or Huntington’s disease, nevertheless a slight genetic risk for Alzheimer’s disease results from the presence of a family member with the disease. The risk for the family member of an Alzheimer victim may be strongly influenced by the age of onset of the disease. For example, Alzheimer’s disease that has its onset at age forty may present a 40 percent risk for family members. In contrast, Alzheimer’s disease beginning after the age of eighty brings about little or no increase for the family member as compared to the general population.

Family members of Alzheimer victims frequently ask whether they are at increased risk for developing the disease. Unfortunately, at present no good predictor exists as to who will develop the disease. In addition, the typical late onset of Alzheimer’s disease makes it impossible to carry out effective family planning. At present the best advice that can be offered is a rough estimate of risk based on the age of onset of Alzheimer’s disease in the affected family member.

The Aluminum Hypothesis

Scientific claims have been made that the brains of Alzheimer victims contain increased amounts of aluminum. Also the feeding of large amounts of aluminum to laboratory animals has been shown to bring about neurofibrillary tangles, which is one of the characteristic microscopic features of Alzheimer’s disease. These reports have in the past received substantial coverage in the popular press and have given rise to great concern regarding the usage of aluminum cookware, drinking water in which aluminum was used in the purification process, or even breathing air containing substantial amounts of aluminum.

The aluminum hypothesis has been seriously questioned. The neurofibrillary tangles associated with aluminum, when examined under the electron microscope, appear different from those seen in Alzheimer’s disease. In addition, other scientists have not been able to replicate the findings of increased amounts of aluminum in the brains of Alzheimer victims. A general loss of enthusiasm for the aluminum hypothesis has thus occurred in recent years, although the role of aluminum or other environ mental agents as a cause or facilitator of the disease does remain a possibility.

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