Alzheimer's Disease and Research: Ethical Concerns Essay

1.1 EXPLAIN THE IMPACT OF KEY LEGISLATION THAT RELATES TO FULFILMENT OF RIGHTS AND CHOICES AND THE MINIMISING OF RISK OF HARM FOR AN INDIVIDUAL WITH DEMENTIA.

In dementia care we often look to family, advocates other professionals and carers in order to gain consent when the individual no longer has the capacity.

Individuals diagnosed with dementia have to face with the prospect of gradual loss of the capacity to make their own decisions. They need to think about and make their choises about care, treatment and money when they are not able to speak for themselves at some time in the future.

The disease called Alzheimer’s is the fourth leading cause of death in the United States (Weiner, 1987). It is estimated that the elderly population will double between now and 2030. During this period, the number of elderly will grow by an average of 2.8% annually (U.S. Census Bureau, 2001). By 2050, the number of people with Alzheimer’s is estimated to range from 11.3 million to 16 million (Alzheimer’s Association, 2005). These startling numbers should prompt an examination into one of the leading causes of death among this group of people. Understanding what Alzheimer’s is and the known causes of the disease are a good starting point. For those who have aging family members, knowing the risk factors and warning

Alzheimer’s Disease is a disease of the future. With the growing aged population, this disease, which affects primarily the elderly, will become of increasing relevance to the medical profession. Also, the high frequency of Alzheimer’s, and the high cost in labor, money, and material of caring for its victims shall put considerable burden on the society as a whole. Here, however, these issues are not going to be debated. Instead the pathology of Alzheimer’s will be reviewed to the extent it is known today.

Alzheimer’s Disease is an irreversible, genetically linked illness. This disease was chosen for the topic of this essay under the consideration that in many families the illness can be incredibly tragic, passing down for generations without mercy. It is not rare to encounter families in which each member is afflicted with a form, mild or severe, of Alzheimer’s. The disease is a progressive brain disease which comes in two separate types: Early-Onset Alzheimer’s Disease and Late-Onset Alzheimer’s Disease. These will be discussed in full later on in the paper.

Dementia which was views as a disease is now viewed as a disability. It allows us to view people with dementia as individuals coping with their own impairment and entitled to an adequate quality of life and comfort. To do this it is necessary for us to shift our way of thinking from focusing on dementia as a disease that degenerative without a cure, to focusing on the whole person and seeing dementia as a disability of certain parts of the persons

Health and social care professionals should always seek valid consent from people with dementia. This should entail informing the person of options, and checking that he or she understands, that there is no coercion and that he or she continues to consent over time. If the person lacks the capacity to make a decision, the provisions of the Mental Capacity Act 2005 must be followed.

For many psychologists and specialist nurses this an exciting opportunity to invest their skills, knowledge, and expertise in the diagnostic process (Murphy & Gair, 2013, Page et al. 2008). However, the disclosure of a diagnosis is a difficult part of a clinician's practice (Bamford et al. 2004) and has been identified as one of the five most difficult aspects of dementia care (Rae, McIntosh, & Colles, 2001). The ethical and practical issues in disclosing a dementia diagnosis still remains a subject of lively debate and one that is likely to continue given the new role and responsibilities provided to multi disciplinary team professionals (e.g. Carpenter, 2008, Murphy & Gair, 2013; Raicher & Carmaelli, 2008). This research proposal will therefore attempt to throw light upon these debates, drawing upon literature from a diverse range of sources that will help add value and improve nursing practice in giving a

Consent for medical treatment is based on three legal ideals: the patient must be informed to make a decision, the patient cannot be intimidated into making a decision, and the patient must be competent (McCabe). In 1982, a study was held by Weithorn and Campbell showing the competency of four age groups (9,14,18, and 21 years-old) based on questions from the ideals aforementioned. The study concluded that fourteen year-olds’ competence and adult are analogous, while nine year-olds could partake in discussions based off of their treatment (Weithorn). The study conducted by Weithorn and Campbell, not only displays competence, but also the ability to comprehend the possible outcomes, and determine the importance of these possible outcomes relative to their own lives. With studies showing that at the age of fourteen the decisional capacity (prefrontal cortex) of the human brain is equal to that of an eighteen year-old, the legal age of consent must be lowered to fourteen years of age.

The call came at 9:05 p.m. on January 20, 2004. Mom had just finished telling the news about the girl's grandfather. He had Alzheimer's Disease and was not doing well at all. The ruling was that he probably would not make it through the night. She knew exactly what the news was the moment her mom said, "No." After the news came, the decision was made they would leave the next day to attend the funeral.

Furthermore, this essay demonstrates the dilemmas that people are faced with when they have Alzheimer’s Disease, focusing on the stigma around Alzheimer’s Disease.

In Reading Three, Ronald Dworkin examines rights to autonomy and the resources those with advanced alzheimer's should or should not have. He explains the decision processes that normal average people have and if those with alzheimer's should have the same rights to making these decisions. Summing up the example he gives about Margo-- Margo when competent could express wishes to have her belongings donated and executed if she were to develop alzheimer's, but then, when she does develop the disease and is no longer seen as competent her wishes may change. Now which of these wishes should the family/doctors of Margo abide to? In once sense, when we are all healthy we see all believe that we would not want to live a life with a disease that will

Although Alzheimer’s disease (henceforth: AD) has been around since the 19th century or possibly even earlier and was at a point in time classified as senile dementia, it wasn’t until 1906 following Dr. Alois Alzheimer’s encounter with Auguste Deter at a Frankfurt asylum that the name of the disease was finally coined. Since then, major developments relating to the disease has taken place. In our report, we addressed some of the areas of the history, contemporary and prospects of the disease.

Insofar as informed consent has been expounded, two main principles of bioethics have emerged as paramount; autonomy and non-maleficence. Although seemingly clear, the boundary of both respecting a person’s autonomy and doing no harm becomes blurred when the patients have disabilities that remove their ability to reason and justify soundly (e.g. total brain injuries or severe stroke patients). Although the participants in the proposed study will be fully-abled as per the exclusion criteria, understanding why cognitively impaired participants cannot give ‘informed’ consent further elaborates on higher-order-thinking required in the informed consent process. Without such a process, patients whom elect to become participants may not understand that this research is a separate entity to their regular treatment regime, and essentially will have become coerced into consenting due to a lack of clarification (Kerridge, Lowe, & Stewart, 2009; Rigg, 2012a; Rigg, 2012b).