Part A, The science of Alzheimer's.
Affecting over four million people each year, Alzheimer's Disease is making its mark on us, (Mayo Clinic, 2000). Dementia once normally associated with old age is now declared a disease. With all our advances in medicine, science, and technology, this ailment of the human race remains, for the most part, a mystery. We are reading the story like a good suspense filled Alfred Hitchcock novel, only we cannot cheat and steal a peak at the last chapter to find out what happens. Page by page we walk through this book, and use the knowledge we come across to help us dream up the reason, the cure, and the end.
The cause appears to be from damaged brain cells supposedly due to a build up of plaques and tangles in areas of the brain crucial to memory, (Mayo Clinic, 1998-2000). These plaques are found to be comprised mainly of a protein called amyloid. Plaque build up is probably due to a form of the apolipoprotien E (ApoE) gene. Located on chromosome 19, ApoE is found in everyone, (Ridley, 2001). Three forms of the ApoE gene have been found. One form has been found to protect against the development of Alzheimer's, while the other form seems to encourage its development, (Alzheimer's Disease Fact Sheet, 1995). For some reason, the ApoE that promotes the disease encourages the build up of the protein amyloid-beta between neurons in the brain. This build up kills neurons.
Another blockage in the brain called tangles, relates to the dependence of neurons on the protein, "tau." Threads of this protein, in an Alzheimer's patient, become twisted or tangled. Researchers believe this twisting seriously damages neurons and causes them to die, (Mayo Clinic, 1998-2000).
One form of Alzheimer's Disease, specifically called "Familial Alzheimer's Disease," is inherited autosomal dominantly. The chance that the next generation of offspring will receive the disease is 50/50 if one parent has it. Familial Alzheimer's is a rare form that usually starts showing symptoms at earlier ages, sometimes prior to sixty years of age. It has been found to be expressed from mutations of chromosomes 1, 14, and 21, (Alzheimer's Disease Genetics, 1997). Research is still in process, and alleles of other genes are suspected of causing or influencing the development of Alzheimer's.
Research is showing that mutations in three genes, presenilin 1 and 2 and the amyloid gene, are leading to Alzheimer's. In Drosophila, the fruit fly used in most genetics research, too much expression of Presenilin in the eye can cause cell death, (Fortini, 2000). This could be the cause of neuron death in humans.
From a simple block in a crucial area -- much like traffic blocked on a one way street, with no side roads -- many problems result. Early on with the disease, forgetfulness becomes an increasingly common trait. People with Alzheimer's may progress from forgetting conversations and misplacing items in illogical places to forgetting family members names and forgetting the names of such everyday objects as a ring or a spoon. Not only is memory affected, but abstract thinking as well. Balancing a check book can become difficult. This problem progresses to an inability to recognize and understand numbers. Expressing thoughts or following a conversation might become problems. Reading and writing may become affected. Disorientation could lead the person to wander from home, as even that place does not feel familiar anymore. Solving problems such as knowing what to do if the person should cut their finger can become a tough task. Alzheimer's is characterized by loss of judgment, decision making abilities, and ability to
make plans and follow through with them. What once might have been easy as pie, i.e., cooking, now becomes as difficult as brain surgery. Taking care of themselves is not the easiest thing for Alzheimer's patients. Brushing the teeth, cooking, cleaning themselves, they all become tasks that are really difficult for them. Mood swings may become immanent (sic.), as is distrust in others, social withdraw, and stubbornness. In the beginning, this may be an attempt at trying to control the disease, a way of coping with the uncontrollable loss of memory.
An inactive mind is not going to help in preventing Alzheimer's. It is recommended that one keep his mind active. Maintaining mental fitness could delay the onset of dementia. A study of nuns showed that they had much lower rates of Alzheimer's, even while their average age was 85. Most of the nuns led highly academic lifestyles well into old age, as many held advanced degrees. Researchers believe that lifelong learning can help aid in the growth of more synapses, which lowers the chance of dementia, as there are more synapses to clog up.
But, the amyloid protein buildups are not easily prevented just by keeping the mind active. Aluminum's and other metals have been found in the plaques of those buildups which led researchers to investigate possible problems with drinking water and other environmental causes. No link has yet been found between the metals in the brain and the environment. They might be there because of the disease itself.
For diagnosis, an ApoE blood test is questionably able to aid. The test will determine if a person has the gene that promotes Alzheimer's, but cannot guarantee if, when, or how the disease will occur. It is thought that for any other use than research purposes, the ApoE is unreasonable since ApoE is only a susceptibility gene, and not the sole cause, (Alzheimer's Disease Genetics, 1997). So for diagnosis, the main route of action still remains for the doctor to rule out other
illnesses first. If all other illnesses are ruled out, then Alzheimer's is diagnosed. Several tests like magnetic resonance imaging (MRI) scans, positron emission tomography (PET) scans, and computerized tomography (CT) scans can help doctors make this decision. A few drugs now exist that are able to slow down the disease. Tacrine (Cognex) is shown to "improve mental abilities in 30% of people with mild to moderate Alzheimer's disease," (Mayo Clinic, 1998-2000). It does so by slowing the breakdown of neurotransmitters. Unfortunately, the drug has been linked to complications of the liver. Donepezil (Aricept) is a drug that works to increase the number of neurotransmitters in the brain. Again, it works for patients with mild to moderate Alzheimer's and has some side effects such as diarrhea, fatigue, and nausea that, unlike Tacrine's damage of the liver, are not long-lasting. Rivastigamine (Exelon) is another drug similar to Tacrine and Donepezil in that it slows the breakdown of neurotransmitters in the brain. Side effects of this drug are nausea and vomiting. Typical of modern medicine's symptom-treating tendency, these drugs all are designed to lessen the symptoms of Alzheimer's. Along with these drugs, doctors may also prescribe medications that help improve the behavioral problems that tend to come with Alzheimer's. Antidepressants, drugs for sleeplessness, wandering, agitation, and anxiety are all kinds of symptoms that a doctor might prescribe medications, to promote the life of the individual with the disease, (Mayo Clinic, 1998-2000).
The Mayo Clinic in Jacksonville, Florida is conducting research on mice with Alzheimer's-like symptoms. Hopefully this research will yield better drugs for the slowing of the disease's progression. Researchers are confident that in the near future, drugs will be available that can do more than just treat the symptoms.
A Duke University investigation using magnetic resonance microscopy (MRM) allows researchers to view plaque build up without requiring a biopsy. This noninvasive technique will allow for better research that could help answer the question as to what comes first -- the buildup of plaque or the alterations in behavior. This technique might make it possible to watch the plaque develop in mice altered to make the amyloid in their brains, which will make for better testing of new drugs, (3-D Plaque Attack, 2000).
Part B, The lives affected.
In a thick Australian accent: "I've got a disease ... which I find hard to remember the name of ... I've got Alzheimer's."
I remember the days when granny would make peanut butter and jelly sandwiches with a taste that sent my neurons soaring. Nowadays when I ask her where the jelly is, she looks in the silverware, and in jars so small, jelly could never possible be. My granny has Alzheimer's disease. Sad, but that is how life goes, I suppose. We enter this life as helpless babies, and we often exit the same. Nursing homes have had booming business as we age longer due to better health care. The problem with being able to keep alive longer is that my grandmother can survive, but will not have the mental function to enjoy it. Americans judge one another based on mental function and productivity levels, (Post, 1995). My granny has worth in this world, even though her mental function is gone. The memories I have of her kindness are all the worth in the world.
Alzheimer's is a neurodegenerative disease that begins with a slow deterioration of mental ability and can steadily progress into complete incoherence over several months. Death is imminent, but will come quicker if the person does not receive some type of care, as caring for oneself while affected with the disease becomes increasingly difficult. It is important for the people giving care to recognize the special needs of the person and to create a safe environment for the person to live and feel as independent as possible. Also, the caregivers should realize
when a nursing home would become more appropriate, such as if care becomes dangerous for either the caregivers or the Alzheimer's patient.
One in ten families are faced with this question each year, "How am I supposed to care for my aging mother/father/grandfather/grandmother? I barely have time to care for myself," (Mayo Clinic, 2000)! In a culture that prides itself on autonomy and independence, how are we to understand how to care for one another when we get sick? For the last 200 years, Americans have been on their own, fending for themselves, and -- some might say -- winning. But what are we winning: loneliness and sorrow?
Since 70% of Alzheimer's patients live at home, care giving becomes a central role in the life of an Alzheimer's patient's relatives, (Mayo Clinic, 2000). No longer is the person able to wash, clothe, and feed himself. The person with Alzheimer's will require full-time care in addition to 24 hour monitoring, as the person can have tendencies to wander. Looking for a bathroom in what used to be a familiar place (i.e. his home) could end in a search party of family members and friends trying to find him.
Coined "the unexpected career," this demanding type of need can become very stressful for a family member to bear by himself, (Aneshensel et al., 1995). Even when divided amongst many family members, this type of care can become stressful, especially when the Alzheimer's patient begins having behavioral problems from frustration over loss of control over his/her own life. One family member cries out, "I can't do what a nursing home can," (You Must..., 1992).
Some Alzheimer's patients are blessed with loving and attentive families. Archie Palmer is one of such luck. His wife and son recall the feelings that Alzheimer's has sent them through in the Australian movie, You Must Remember This: Inside Alzheimer's Disease. Once an
animated speaker and social gentleman, he now no longer recognizes his wife of 37 years, and pushes her hands away screaming, "Get your bloody hands off me," while she tries to wash him in the tub. His son remembers how they would talk about engineering (both engineers) together and how his dad would help him solve his technical problems. He was so joyful recalling these memories. The camera then panned to his left where his dad sat unnoticed the whole time, spacy eyed and drooling a little. This message was poignant. His wife then tells us she actually feels closer to him now than ever. She cares for him with so much love and affection. Throughout the movie, through his bouts of anger, never did she raise her voice at him, she patiently explained what she was doing to him and he would calm down.
One desired ethical goal of an Alzheimer's patient's family is to become advocates for that person, since they can no longer speak up for themselves. Stephen Post describes the patient as being "politically voiceless and therefore vulnerable," (Post, 1995). A teary eyed John Mitchel, who cares for his Alzheimer inflicted wife, stated that he does not blame god, and instead thinks it is for a significant reason, perhaps to get the word out about Alzheimer's, (You Must..., 1992). It is then the patient's family's job to advocate for that individual to assure his/her needs are met. Through this advocacy, respect for people who have dementia is rising. Once seen as incompetent and senile, people are becoming more aware of the truth of this matter. The truth is that jokes made about growing old and loosing one's mind are not appropriate. Sensitivity is needed when dealing with these issues, and more people are seeing this need.
The family also must create an atmosphere so the Alzheimer's individual can find self-worth and well-being. An issue families might run into while trying to provide for the person are thoughts of wanting only what is best for the patient, therefore ignoring the needs of the caregiver. This thinking is said to be dangerous since the needs of the patient and the caregivers are "practically and ethically interwoven and interdependent," (Post, 1995).
Certain ethical issues are raised with Alzheimer's Disease. Truthfulness in disclosing the diagnosis is one of the first to be confronted. Physicians should carefully explain to the patient and family the diagnosis of the disease. Stephen Post and Peter Whitehouse, M.D., Ph.D. concur with an idea of holding the disclosure meeting with the patient and the family, on the grounds that the family offer emotional support. If a patient objects to having family present, this wish should be upheld, Post and Whitehouse say, (Post, 1995).
How long can one afflicted with Alzheimer's continue to drive? Post and Whitehouse suggest that the diagnosis itself is not sufficient evidence to immediately deny the person's driving privileges. They both caution that in a setting of autonomy and independence, "Relying on others for transportation can be perceived as demeaning," (Post, 1995). Often, Alzheimer's individuals can continue driving a few years post-diagnosis. Abatement of the driving privilege depends on the disease's rate of progression. It is important for the Alzheimer individual to play a role in the decision making process over the driving issue, as long as the mental ability is there. However, if the person presents a direct threat to public safety, the only responsible route is to take the privilege away. If restrictions such as driving only during the day and in familiar places does not assure complete safety to the community, the driving privilege should be revoked, (Post, 1995). Most people with Alzheimer's or dementia stop driving after several years
post-diagnosis, (Drachman, 1993). Other privileges should also come into debate with driving; cooking and walking alone are a few, but restrictions should be timed precisely, neither too soon, nor too late.
Controlling an Alzheimer patient's behavior is of considerable ethical concern. Balancing the feelings and safety of others with the self-esteem and independence of the Alzheimer's individual is crucial. Wandering is of specific concern, as it occurs in 26% of nursing homes and 59% of home based Alzheimer's folks, (Post, 1995). More consideration should be given to using activities instead of chemical or physical restraints in behavior control.
One of the more sensitive areas of ethical concern lies with the right to die. An important issue to remember is that euthanasia and assisted suicide is not to be confused with do not resuscitate (DNR) wishes. Though euthanasia remains illegal in the USA, DNR's are. Therefore, the patients wishes regarding reduced or no resuscitative efforts should be supported and respected. It is especially important for hospitals to respect the patient's and family's DNR wishes, or else people's faith in the medical care system mitigates. According to the "Fairhill" Guidelines in the book, The Moral Challenge of Alzheimer Disease, the physician of the Alzheimer afflicted person should stir up the issue concerning the limit to place on resuscitation methods. Alzheimer's is a terminal disease (the person usually dies of pneumonia), so discussion over their death should begin early in the diagnosis, when the person is still able to competently express his or her wishes. Incorporation of the person's wishes is very important, so even people with mild dementia should be asked. Control over the resuscitation technologies like artificial feeding, cardiopulmonary resuscitation, mechanical ventilators, and other "invasive technologies" should be included in the talk. The wishes made by the affected person, in a
competent state, should be placed over the wishes of that person's family. If conflict arises between the affected person and his family, the family needs to understand and respect the person's wishes. Usually, constant communication can solve disagreements. Some patients might want to give family members power over their wishes, this can be done with a power of attorney and a living will, (Post, 1995).
"I'm very optimistic that the progress of genetic research and molecular biology, including animal models with the same neurologic changes associated with Alzheimer's disease, soon will yield treatments that will intervene in the disease process," states John Hardy, Ph. D., a pharmacologist involved in Alzheimer's and Parkinson's research, (Mayo Clinic, 2000). The speed at which genetic research progresses has surprised many scientists. This speed is what keeps patients, family members, scientists, and me hoping for a solution to neurodegenerative diseases.
Bibliography, Part A
1. "3-D Plaque Attack." Duke Medical Perspectives Spring 2000: 32.
2. "Alzheimer's Disease Fact Sheet." National Institutes of Health. National Institute of Aging. 1995. http://www.alzheimers.org/pubs/adfact.html.
3. "Alzheimer's Disease Genetics." U.S. Department of Health and Human Services. 1997. http://alzheimers.org/pubs/genefact.html.
4. Fortini, Mark. Bonini, Nancy. "Modeling human neurodegenerative diseases in Drosophila. On a Wind and a Prayer." Trends in Genetics April 2000: 161-167.
5. Mayo Clinic. "Alzheimer's Research." Mayo Foundation for Medical Education and Research, 1998-2000. http://www.mayoclinic.com/home?id+HQ00219.
6. Ridley, Matt. "They Year of The Genome." Discovery January 2001: 50-53.
Bilbiography, Part B
1. Aneshensel, Carol S. et al. Profiles in Caregiving. Academic Press. San Diego. 1995.
2. Drachman, D. A., and Swearer, J.M. (1993*). Drivind and Alzheimer's disease. Neurology, 43:2448-56.
3. Mayo Clinic. "Alzheimer's Research." Mayo Foundation for Medical Education and Research, (1998-2000). http://www.mayoclinic.com/home?id+HQ00219.
4. Post, Stephen G. The Moral Challenge of Alzheimer Disease. The Johns Hopkins University Press. Baltimore and London: (1995).
5. You Must Remember This: Inside Alzheimer's Disease. Producers: Helen Bowden and Susan Mackinnon. New York, NY : Filmakers Library, (1992, 1990).