by Danielle DeVost '13
Alzheimer's disease is relentlessly affecting and destroying the brains and lives of many of our nation's elders. It is depriving them of memory, the ability to reason, and is even affecting their emotions and behavior. Alzheimer's disease is a degenerative disorder of the brain that affects approximately 4.5 million Americans (Research & Prevention). It is also the eighth leading cause of death in the United States as well as the fourth leading cause of death due to disease for people over the age of 65 (Research & Prevention). Ultimately, Alzheimer's disease has profound emotional and financial effects on the individual, his family, and caregivers alike.
All throughout history, progressive mental deterioration and old age have been described and recognized. Yet, it was not until 1906 that Dr. Alois Alzheimer, a German physician, identified a collection of brain cell abnormalities as a disease (Cambridge Historical). Dr. Alzheimer had a patient who had died after many years of suffering from severe memory problems, confusion, and even difficulty understanding questions. After this incident, while performing a brain autopsy, Dr. Alzheimer noted dense deposits surrounding the nerve cells, today known as neuritic plaques (Symptoms & Stages). Also, inside the nerve cells, he observed twisted bands of fibers, today known as neurofibrillary tangles. These plaques and tangles that were found during this autopsy indicate a definitive diagnosis of Alzheimer's disease. Today, this degenerative brain disorder bears Dr. Alois Alzheimers's name.
Alzheimer's disease has many distinguishing characteristics, and experts have documented common patterns and progression of the symptoms of the disease. Because of these patterns, the many behavioral signs and symptoms of Alzheimer's disease are divided into corresponding stages of progression. Not everyone experiences the same symptoms and progression of the disease at the same rate; it can affect each person differently. There are seven different noted stages of the progression of Alzheimer's disease and three general divisions or categories that these stages fall within; they include the early-stage, late-stage, and mid-stage, all based on a system that was developed by Barry Reisberg, M.D., clinical director of New York University School of Medicine's Siberstein Aging and Dementia Research Center (Understanding).
According to Dr. Reisberg, the early stage consists of stage one, two, and three. Stage one is when the individual suffers from no impairment, is able to function normally, and experiences no memory problems. Stage two is when the individual suffers from very mild cognitive decline, which may indicate normal changes associated with aging or could possibly be the earliest signs of Alzheimer's disease (Understanding). The individual, during this stage, may feel like he has memory loss, especially forgetting where things are placed, for example, the location of the keys, eyeglasses, and other everyday objects, and also forgetting familiar words and names. But it is too early for these problems to be evident during a medical examination or even to be apparent to friends, family or co-workers. Stage three is when the individual suffers from mild cognitive decline, and this is when his or her friends, family, and/or co-workers begin to notice the inadequacies (Understanding). Some of the difficulties that the individual experiences would be word- or name-finding problems, decreased ability to remember the names of new people when introduced, performance issues in the work setting, reading and retaining little material, losing and misplacing valuable objects, and losing the ability to plan and organize.
The mid-stage of Alzheimer's disease consists of stages four, five and six. Stage four in the progression of Alzheimer's disease is when the individual suffers from moderate cognitive decline (Understanding). The individual experiences a decreased knowledge of recent occasions or even current events, an impaired ability to perform mental arithmetic, such as counting backwards from seventy-five by sevens, decreased capacity to perform complex tasks, such as managing finances, and a reduced memory of personal history. Also during this stage, the individual starts to become quiet, withdrawn, and submissive especially in socially or mentally challenging situations.
Stage five is when the individual suffers from moderately severe cognitive decline (Understanding). Major gaps in memory and deficits in cognitive function begin to emerge and, because of this, some assistance with day-to-day activities becomes necessary (Understanding). The individual becomes unable to recall important details, such as his current home addresses and telephone number and the current date or day of the week but usually retains substantial knowledge about himself, knowing his own name, the names of spouse or even children. The individual can also struggle with less challenging mental arithmetic, such as counting backward from forty by fours or even from twenty by twos. He also may struggle and need help choosing proper clothing and usually can require assistance with eating or using the bathroom.
In stage six, the individual suffers from severe cognitive decline with the memory difficulties continuing to worsen (Understanding). During this stage, significant personality changes emerge considerably affecting the individual, requiring extensive help with routine activities such as getting dressed properly and handling details of using the bathroom. Without supervision while getting dressed, he could make errors such as putting pajamas over his daytime clothes or shoes on the wrong feet. During this stage, the individual is likely to have an increase in episodes of urinary or fecal incontinence and may experience disruption of normal sleep and waking cycles (Understanding). Some behavioral symptoms that would surface during this stage would include suspiciousness and delusions, essentially believing that the caregiver, the person taking care of them, is an imposter (Understanding). He also might begin having hallucinations and seeing and hearing things that are not really there. The individual loses most awareness of recent experiences or events as well as of his surroundings, which can cause him to be likely to wander and become lost very easily. The patient might occasionally forget the name of his spouse or caregiver but usually can distinguish familiar faces and generally recall his own name.
The last and final stage of the disease, also known as the late-stage or stage seven, according to Dr. Reisberg, is when the individual suffers from very severe cognitive decline (Understanding). The individual ultimately loses the ability to respond to the environment, the ability and capacity for recognizable speech with an occasional word of phrase to be uttered, and the ability to control movement. Muscles grow rigid and reflexes become abnormal (Understanding). The patient begins to need assistance to walk, help eating with swallowing impaired, and using the bathroom. Individuals in this stage also lose the ability to hold up their heads, and they even lose the ability to smile.
How does one get Alzheimer's disease? There are two proven factors that can lead to Alzheimer's disease. Family history and age both increase the likelihood of developing the disease but do not guarantee it. Alzheimer's disease normally emerges after the age of 65, and the risk increases with advancing age (Understanding). Having a family member who has Alzheimer's disease increases one's risk of getting the disease, especially if the relative has the early-onset form of the disease, which begins before the age of 65. The risk continues to increase if more than one family member has the disease; however, half of the people with the far more common late-onset form of Alzheimer's disease, which is after the age of 65, have no family history of the disease (Understanding).
Research is beginning to reveal some clues, and there are some risk factors that may be attributed to head injury. There appears to be a strong link between serious head injury and a future risk of Alzheimer's disease (What Is). Also, some of the strongest evidence links brain health and heart health (What Is). Every time the heart beats, it pumps about 20 to 25 percent of the blood to the head where the brain cells use at least 20 percent of the food and oxygen the blood carries (What Is). Staying healthy while aging helps keep the brain healthy, offering some protection against developing Alzheimer's disease. This includes keeping a healthy weight within recommended guidelines, avoiding tobacco and excess alcohol, staying socially connected, and exercising both the body and mind.
The reactions of patients when receiving the news that they have Alzheimer's disease can vary greatly. Many individuals' thoughts and feelings include shock, anger, disbelief, fear and despair. Jan Prescott, a patient who had just found out she had Alzheimer's disease, said:
A sense of utter helplessness swept over me when the doctor said that I probably had Alzheimer's disease. The very words Alzheimer's disease sounded harsh and unreal. I wanted to believe that he was talking about someone elsenot me. I wanted to talk; but I didn't want anyone to know how scared I was. I had always imagined myself to be a strong person who could face anything. But now I was afraid of a disease I did not understand. How was I going to live the rest of my life and take care of my family? All I could see was darkness. (Cohen 59)
This is really tragic situation, but these individuals do not have to suffer alone; they often need help in voicing their emotions and ultimately coming to terms with them. However, talking and listening are not always easy tasks; sometimes what the patients say can be painful to the listener. An example of this would be the words of another Alzheimer's patient, Jim Evans: Alzheimer's disease is worse than death. It leaves bone and flesh intact while it erases judgment and memory. I could live with death. Death is a part of the cycle of life. It's like spring, the end of winter. But this disease -- it's unnatural. It's the end of hope (Cohen 60). This quote puts things into perspective by illustrating how the brain of an Alzheimer's patient's slowly dies but the body continues to exist.
It is estimated that caregivers spend 60 to 100 hours per week on the care of patients with Alzheimer's disease (Research & Prevention). It is also estimated that more than seven out of ten people with Alzheimer's disease live at home with 75 percent of home care provided by friends and family (Research & Prevention). In most cases, the primary caregiver of a person with Alzheimer's is a loved one, and, even in the early stages of the disease, care giving can be an extremely demanding, 24-hour-a-day task. The caregivers of the Alzheimer's patient live not only with their own daily pressures and tensions of their ordinary lives but also with the constant intensity of an enormous responsibility of taking care of someone else. Caregivers need to be flexible and understanding, especially when it comes to dealing with the changes in their loved ones' behavior and personalities. They require continuous care, constant attention, and emotional support as well as protection and help as they become increasingly dependent (Powell 29). In order to provide care for the patient, caregivers must also come to terms with their own confusion, fear, frustration, anger and embarrassment as they sadly watch as the characteristics that made up the unique personality of their afflicted loved one slowly disappear (Powell 30).
Many family members may be unable to care for loved ones at home who are in the final stage of Alzheimer's disease. The decision to move them to a nursing home can be extremely difficult, but it may be the best option because Alzheimer's patients require continuous monitoring. The behaviors of Alzheimer's patients can be beyond frustrating to live with; for example, many patients ask the same questions continually, even if the answer is given over and over again. During an interview, Stephen Hankard, a weekly volunteer at the New Hampshire Veterans' Home in Tilton, New Hampshire stated:
Some family members of patients deal very well with the situation and others do not, and it becomes a difficult day when they visit. A married couple at the Veterans' Home, one in the Alzheimer Unit and the other in the regular population of the home, had a very trying adjustment. Bob did not suffer from dementia while his wife did. They were separated because of security reasons and Bob had difficulty adjusting to his wife's condition and had little patience with her loss of memory. You can see in the faces the pain of family members when they are not recognized by their loved ones. You can sometimes hear the impatience in their responses to their affected relative when they have to repeat the same answer to the patient's questions over and over again. (Hankard)
I have also personally been able to experience this first hand because I have had the opportunity to volunteer at the Veterans' Home and was able to interact with some of the Alzheimer's patients including Bob and his wife Dot. Even after spending a short time with the couple these tendencies were clear. While sitting down and getting to know Dot she would continuously ask me the same questions and you could hear the frustration in Bob's voice and see it in his face when he would say, You already said that.
Maureen Campbell, recreational director of the Life Enhancement Dementia Unit at the New Hampshire Veterans' Home and an employee of three years, connects daily with the patients either by one-on-one visits, facilitating groups, care conference assessments, initial assessments, supervising staff, working with patients, transporting patients, observing participation records, and, or greeting them in passing. Maureen states that:
Working with Alzheimer's patients does take a toll on me at times because the behaviors are so unpredictable when planning and implementing recreation programs; I must always be on guard and constantly aware of residents' actions and the energy I am giving off or my staff's expressions to the patients and considering what is going on in their lives. (Campbell)
The caregivers are significantly affected on a daily basis and must constantly guard their behaviors as to not upset the Alzheimer's patients. I, personally, have seen anger directed towards the staff and in some cases violent behavior, and the caregivers need to know how to deescalate these situations.
Campbell also discussed the direct effects on the families of Alzheimer's patients at the New Hampshire Veterans' Home.
Many family members are so hurt by their loved ones' inability to function normally or remember them that they refuse to visit. Some family members become angry with the staff for not being able to help their loved one. All family members fear they will get the disease. Some family members grow by spending unselfish time with their loved ones by bringing quality of life to the lives of people who need people to reflect as a child does the positive energy given to them. Some family members constantly feel guilty since they have to put their loved one in an institution and can't take care of them at home because the care is 24 hours and the patient's resistance to care can be very difficult to manage because of the perception of the patient who is unable to take care of him or herself. Some family members are relieved knowing their loved one is taken care of and safe and being provided with recreational programs and excellent nursing care to enhance their lives and now they can visit without caregivers' strain and/or frustration flowing into their own personal lives. (Campbell)
This quote illustrates the fact that the different families deal with the illness in different ways, but it is never easy.
Caring for Alzheimer's patients is expensive, not only emotionally but financially as well. Alzheimer's disease has both personal and societal costs. The estimated average personal cost per patient is $18,000 per year with an average lifetime cost per patient of $174,000 (Volicer 43). The United States spends at least $100 billion a year on Alzheimer's disease, making it the third most expensive disease in the country after heart disease and cancer (Clinical Practice 28).
Alzheimer's has been described in popular writing as the silent epidemic and a funeral that never ends (Gillick 171). Every seven seconds someone develops Alzheimer's disease, and currently there is no definitive cure (What Is). It is proven that 25 percent of people over the age of 80 suffer from dementia (Natural Medicine). The disease is devastating, and without better ways to prevent it, the number of people afflicted with Alzheimer's is predicted to rise from around 4.5 million in the United States today to between 11 million and 16 million by 2050 (Mucke). Overall, Alzheimer's disease puts a considerable strain on not only on the patients but also families, caregivers and society as a whole.
Danielle DeVost wrote this research paper for a Writing 105 class with Professor Andrews in the fall 2009 semester. Her paper was a third-place winner in the English Department's writing contest.
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