Abstract
This paper assesses the nature of dementia as a neurodegenerative and debilitating condition in a patient’s life and the ethical and cultural problems that relate with its diagnosis, treatment, and management. The context of this assessment is recognition that Dementia is one of the greatest concerns in global healthcare today. The condition involves damage to patients’ brains following progressive degeneration of nerve cells. Utilizing a literature review of credible resources obtained through an online search, this paper finds that the taboo nature and fear surrounding dementia represent important factors that underlie the provision of effective diagnosis, treatment, and management services for dementia patients, thereby influencing a poor quality of social, health, and welfare services for the patients. Cultural factors tend to influence negatively and complicate the provision of effective support services to dementia patients and their families, as well as the diagnosis and treatment of the condition. These factors include the fact that dementia is a taboo topic, stigmatization of people with the condition, and poor public awareness of the condition and its causes and implications. Ethical issues in dementia relate to clinical practice and research, use of medications in people living with dementia, and the disclosure of diagno
Ethical and Cultural Problems in Diagnosis, Treatment, and Management of Dementia as a Degenerative Disease
Introduction
Strictly speaking, dementia does not refer to a specific disease. Rather, it refers to a broad category of diseases of the brain that influence a long-term, gradual, and irreversible decrease in the capacity of patients to think and remember. This degeneration of cognitive capacities is large enough to affect the daily functioning of an individual. Other related problems include language difficulties, emotional problems, and decreased motivation without effects on consciousness (Copstead & Banasik, 2013). The diagnosis of dementia features a level of change in mental and cognitive functioning relative to the expected level due to aging. While the most common variety of dementia is Alzheimer’s, which represents about 50-70% of diagnosed cases, other common types are frontotemporal, Lewy body, and vascular dementia. Other conditions, such as syphilis, Parkinson’s disease, and Creutzfeldt-Jakob disease, represent less common varieties of dementia. In the DSM 5 taxonomic and diagnostic tool, dementia is a neurocognitive disorder that features several levels of severity (Copstead & Banasik, 2013).
Dementia has no known cure, which underlies the devastating nature of its diagnosis in the life of an individual. This nature of dementia raises a broad variety of ethical and cultural problems in the diagnosis, treatment, and management of dementia. Ethical issues emerge in cases where conflicts emerge between what the members of society value in particular social contexts. They also concern differences in opinion among members of the society concerning the aspects that make up a good life or virtuous individual (Whitehouse, 2000). Ethical and cultural assessments relating to dementia and its implications in diagnosis, treatment, and management are vital in the context of observations of the common theme of a lack of respect for individuals with cognitive deficits both among members of the society and among personnel and professionals involved in their care.
In this paper, I find that the ethical and cultural problems that relate with diagnosis, treatment, and management of dementia have a basis on the condition’s significant effects in threatening the rationality, independence, and dignity of individual patients and the specific concerns that it raises about the quality of their lives in the long term. This assessment is especially significant considering that the symptoms of dementia include deeply inconveniencing experiences for patients and their families such as memory and communication problems, significant changes in behaviour and mood, degeneration of cognitive abilities, and gradual loss of individuals’ control and physical functions (such as movement). Social and cultural stigma associated with the condition influences challenges in the effective and adequate provision of community-based support services for dementia patients and their families.
The nature of Dementia as a Debilitating Disease
The diagnosis of dementia represents a devastating event in the life of an individual. While popular perception in some societies is that dementia is a normal part of aging, several factors could play a crucial role in the deterioration and complete loss of neurocognitive capacity. The book on Pathophysiology argues that whereas several patients showcase the signs and symptoms of dementia at later stages, the disease must have existed for a long time. In most patients, dementia results in complications revolving around a decline in cognitive functioning, and these include memory loss (often short-term memory) and reduced thinking abilities (Copstead & Banasik, 2013, p.926). Dementia is a debilitating disease that may not be well known amongst many people. However, according to an article titled “What does the general public understand about prevention and treatment of dementia,” the WHO recently came up with interventions such as the Global Action Plan, which urges countries to implement campaigns to raise awareness about dementia. These efforts in place are because of the high prevalence rates of dementia around the world with stakeholders estimating that 47 million people live with the illness around the globe (Cations et al., 2018). When it comes to the issues of dementia, some of the significant questions often asked are what the role of genetic factors such as Frontotemporal Lobar Degeneration (FLD) in patients who have Dementia is and whether certain individuals with specific comorbidities have a higher risk of developing Dementia than ones without comorbidities. To fully understand and answer the questions, broader research is essential.
According to research, Frontotemporal dementia (FTD) is the product of many genetic dysfunctions. FTD is the second most common type of dementia after Alzheimer’s. Based on a study performed on gene co-expression network analysis of microarray expression using data from 101 individuals without neurodegenerative diseases, 12 genes (MAPT, GRN, CHMP2B, CTSC, HLA-DRA, TMEM106B, C9 or f72, VCP, UBQLN2, OPTN, TARDBP, and FUS) associated with FTD (Ferrari et al., 2016). The study further shows that the 12 genes were present among individuals who have Dementia.
Dementia is a neurodegenerative illness, which stems from many genetic-related factors that can also be seen in Frontotemporal Dementia. This genetic dysfunction is common and found in both men and women of all ages. This is contrary to common perception that Dementia has nothing to do with old age. Many indicators point to genetic synergy by designating FTD genetic interaction map leading to a strong connection between Calcium/cAMP metabolism, oxidative stress-induced Serine/Threonine kinases activation, and postsynaptic membrane potentiation. In turn, this tends to suggest that a possible combination of neuronal damage and loss of neuroprotection can lead to the death of cells (Palluzzi et al., 2017). Statistical and analytical studies done with many patients suggest that there are correlations between many types of diseases or illnesses and dementia. Several facts tie specific comorbidities to higher risk factors among patients with dementia. According to a nationwide population-based case-control study, patients with primary insomnia often face the risk of suffering from complications such as diabetes, dyslipidemia, hypertension, coronary heart disease, chronic liver disease, and chronic kidney disease that increase the risk for cognitive complications (Hung et al., 2018). Moreover, another illness associated with dementia is acute kidney injury (AKI). Reduced functionality represents acute kidney injury in the renal area that could disrupt the balance of acid and base, fluid, and electrolytes in the body. Patients with AKI often have a significantly higher overall incidence of dementia than those without AKI. Researchers have argued that AKI serves as a risk factor for long-term functional changes in the brain (Tsai et al., 2017).
A nationwide retrospective population-based cohort study done on patients with tension-type headaches indicates a correlation with the development of dementia. A tension-type headache (TTH) is the most common type of primary headaches that are closely associated with the development of dementia. Although the intensity of TTH is generally less severe than that of a migraine, it is a significant condition owing to its high prevalence in the general population (Yang et al., 2016). There are several other indicators that lead to dementia. For instance, pain disorders cause a change in the structure of various parts of the brain such as the thalamus, anterior cingulate, somatosensory, basal ganglia, cerebellum, and amygdala. These are often connected to the memory network, and thus, interference with them could cause dementia (Yang et al., 2016). The onset of diseases that could bring about dementia and genetic markers can be extremely debilitating for the suffering individual. Since there is no actual cure for dementia and scientists are still not sure what provokes this disease, it is immensely difficult to control.
Ethical and Cultural Problems in Dementia
Dementia, which is one of the greatest concerns in global healthcare today, refers to a condition that results in damage of the brain following progressive degeneration of nerve cells (Bioethics, 2009). It is common among people aged 65 and above, with its signs and symptoms including memory and communication problems, significant changes in behaviour and mood, and gradual loss of an individual’s control and physical functions (such as movement). Additionally, the condition has close links with two key diseases – vascular dementia and Alzheimer’s disease (Bioethics, 2009). According to health experts, the prevalence of dementia increases rapidly with age. One in every five individuals aged 85 and above suffers from the condition. Studies have illustrated that dementia is also significantly prevalent in developed countries, such as the UK and the U.S. By 2015, the total prevalence of dementia among people aged 65 and over was 7.1 percent, while about 850,000 people lived with dementia in the UK in the same year (Dawson et al., 2015). In 2015, 5m people aged at least 65 years in the U.S. were dementia patients (Dawson et al., 2015). Despite the increasing prevalence of dementia in the society, the best way to support the affected people remains a significant challenge around the world. The provision of support services for dementia patients varies from one culture to another and from one society to another. Moreover, the effective provision of medical services to dementia patients around the world is largely subject to ethical obstacles.
Cultural factors tend to influence negatively and complicate the provision of effective support services to dementia patients and their families, as well as the diagnosis and treatment of the condition (Shah & Unit, 2004). Research indicates that there is a scarcity of proper screening and diagnostic instruments for dementia for use among elderly citizens from ethnic and racial minorities in developed countries, such as the U.S., and developing countries in Latin America, parts of Asia, and Africa. Often, cognitive tests that are developed for one ethnic group may be inappropriate for another ethnic group mainly because of differences in culture. As such, there is a need to develop screening and diagnostic instruments that account for the influence of cultural factors. The Japanese are among those that are most affected by the lack of community-based support services for dementia patients and their families. As a result, prevalence of the condition tends to be higher in these areas as compared to others. Despite the comparable rates of dementia in Japanese and American societies, the occurrence rate of vascular dementia is higher in Japan than in America. Moreover, the frequency of Alzheimer’s disease among Japanese Americans in states such as Honolulu and Washington is almost equal to the rate among White Americans.
The Indo-US areas are listed among those most affected by the lack of community-based support services for dementia patients and their families, hence the relatively high rate of the condition (Shah & Unit, 2004). The prevalence of dementia in India rivals that in China. According to Zheng et al. (2017), these societies rank first among those affected by the lack of community-based support services for dementia patients, thereby contributing substantially to the high prevalence of the disorder in China. In fact, China alone accounts for approximately 20 percent of dementia cases around the world. Research conducted by the Chinese government in 2015 indicated that out of the population of 222 million of older people in the country at the time, 9.5 million were living with dementia.
The lack of community-based support services for patients and their families in the mentioned societies is attributable to various reasons. One of the reasons is that dementia is considered a taboo topic. It is one of the conditions that is widely feared in the global society with surveys indicating that older people are even more concerned about developing dementia than they are about other health conditions, such as heart disease, stroke, and cancer. Both in the traditional and modern times, dementia was and still is a taboo subject. Generally, people are unwilling to talk about it in public or come out and acknowledge that their family member or friend has been diagnosed with the condition. Despite the efforts of media platforms to lessen the stigma surrounding dementia, the society’s perception of people living with dementia remains overwhelmingly negative overall, which represents another hindrance against the provision of effective support services for dementia patients and their families. Due to the stigma attached to the condition, the members of society refrain from interacting with or offering community-based support services for patients and their families. It should be noted that whereas individuals do not trivialize the symptoms of conditions such as cancer, they do not take those of dementia seriously enough (Bioethics, 2009). In a speech in October 2008, Alan Johnson, the Secretary of State for Health at the time, stated that it is not rare to find people referring to dementia patients as “a bit doolally.” Additionally, the stigmatization of dementia is worsened by the fact that the workforce that cares for people with dementia often experiences discrimination and poor remuneration. In most cases, the public disclosure of a person diagnosed with the disorder paves the way for the membership of such a person to a new social group that is often linked with social exclusion, mistreatment, devaluation, and the losses of status and friends (Bioethics, 2009). People with dementia and their families suffer mainly from the fear of stigma. Therefore, they often end up rejecting community-based supported services channeled to them.
Poor awareness of dementia in public is another reason for the unsatisfactory community-based support services for dementia patients and their families in selected areas. Despite efforts by the World Health Organization (WHO) and Alzheimer’s Disease International (ADI) to raise awareness of the disorder as one of the most significant health concerns globally, ignorance and misunderstanding remain common in the global public. People who are ignorant of the matters concerning the condition attribute the cognitive dysfunction that comes with it to a normal aging process, and thus, they fail to pay the necessary attention to people living with dementia. In the Chinese culture, for instance, there is the belief that people living with dementia can hardly benefit from medical care (Chen et al., 2017). The perception is worsened by the fact that people in the Chinese community who work in the mental health field do not believe that it is meaningful and essential to provide basic support services to dementia patients. Other factors behind the lack of community-based support services for dementia patients in selected areas include inadequate knowledge about the condition, undeveloped service systems, and the high cost of care and related services (Chen et al., 2017).
The growing number of people who have dementia has intensified the ethical issues emerging in clinical practice and research, use of medications in people living with dementia, as well as diagnostic disclosure (Whitehouse, 2000). Several ethical obstacles tend to affect how medical services are provided to the patients. One of the fundamental ethical principles that emerge when it comes to diagnosing and treating the disorder is the principle of non-maleficence. It is critical for clinicians and other health experts dealing with dementia to consider any potential side effects of medication provided to patients such as metabolic abnormalities, confusion, mortality, and cerebrovascular events. These side effects could cause severe harm or destabilization of the patient before the initiation of a particular therapeutic or medical intervention (Dunn, Alici, & Roberts, 2015). In such cases, it is required that clinicians act with empathy and compassion and utilize medications that could enhance the welfare of patients while minimizing possible adverse effects. However, due to inadequate knowledge of dementia, clinicians hardly exercise non-maleficence, and thus, potential side effects end up taking a toll on the patients.
The lack of autonomy is also an ethical obstacle that affects how medical services are provided to dementia patients. Autonomy is one of the most delicate ethical principles for the population of dementia patients. The use of medication among patients with cognitive impairments, such as dementia, is often “off-label.” As such, it is usually important to put in place special efforts to ensure that the anticipated benefits outweigh the anticipated risks for the patient. In other words, “off-label” medication use among dementia patients could act as a deviation from the required standard of care. Thus special efforts must be taken to ensure that the informed consent of the patient is obtained. Unfortunately, when working with dementia patients, clinicians often have the presumption that they lack treatment decision-making capacity (Dunn, Alici, & Roberts, 2015). This often jeopardizes the provision of medical services to dementia patients.
Conflicts of interest represent another ethical obstacle that affects how the issues of community services for patients with dementia are addressed in the medical community. The issue often occurs when physicians or their institutions have selfish or hidden interests when diagnosing or treating dementia patients (Whitehouse, 2000). In the case of inadequate disclosure or conflict of interest, it is likely that the trust of the public, as well as that of the patient, may be undermined. A conflict of interest may also occur from the perspective of information collected from the patient where clinicians may decide to hide the information from the patients or families. It is unethical for physicians to collaborate with drug companies to suppress negative studies and results obtained from dementia patients although this remains a common occurrence (Whitehouse, 2000). At the same time, physicians may determine when the use of a placebo is inappropriate but may fail to disclose the same to the patient and his or her relatives.
Dementia is a condition that has caused great concern in the global healthcare sector today. It is a condition that is common among people aged 65 and above. Its signs and symptoms include memory and communication problems, significant changes in behavior and mood, as well as the gradual loss of an individual’s control and physical functions. The prevalence of the condition is on the rise. Amidst the rising figures, the provision of support services for dementia patients remains a significant challenge around the world. Several societies around the world are affected by the lack of community-based supported services for dementia patients and their families. Some of the societies that are most affected from this perspective are Japanese, Chinese, and Indo-US societies. Reasons for the lack of essential support services for dementia patients in various cultures include the fact that dementia is a taboo topic, stigmatization of people with the condition, and poor public awareness of the conditions and its causes and implications. Others are inadequate knowledge, undeveloped service systems, and high costs of care and related services. Moreover, numerous ethical obstacles exist, and these affect how medical services are provided to dementia patients. Some of these ethical obstacles are the failure to exercise non-maleficence, the lack of autonomy, and conflicts of interest among physicians who deal with dementia patients.
Conclusion
In an attempt to address the ethical and cultural problems that dementia raises in the lives of patients and their families, along with their interactions with healthcare professionals and caregivers, it is essential to focus on the lived experiences of patients, informed conscience, and the vulnerability, dependency, relationships, and dignity of patients. The lived experience of each person is different, even in situations that are apparently similar. Lived experiences are the ways in which individuals experience particular situations and their lives. In order to address the ethical and cultural problems identified above, it is necessary to apply a normative standard, in terms of an agreement concerning what is good and bad, ethical, and unethical. This is vital to address the needs of dementia patients, especially their dignity and vulnerability. To achieve this, training and education is necessary to change the attitudes, behaviors, and treatment of professionals and members of the public towards dementia patients. Sensitization of these stakeholders concerning the causes and implications of the condition in patients’ lives is important in influencing the positive treatment of patients based on compassion, sensitivity, and better ethics in the relationships and interactions of caregivers and members of the society with dementia patients.
The ethical and cultural problems that relate with diagnosis, treatment, and management of dementia have a basis on the condition’s significant effects in threatening the rationality, independence, and dignity of individual patients and the specific concerns that it raises about the quality of their lives in the long term. In an attempt to address the ethical and cultural problems that dementia raises in the lives of patients and their families, along with their interactions with healthcare professionals and caregivers, it is essential to focus on the lived experiences of patients, informed conscience, and the vulnerability, dependency, relationships, and dignity of patients.
Dementia as a taboo topic: As discussed above, the treatment of dementia as a taboo topic from social and cultural perspectives is a fundamental problem owing to the challenges that it influences in the efforts to provide effective and adequate community-based services to the condition’s patients. Training and education of both caregivers (professionals) and members of the society are important strategies in changing the undesirable attitudes, behaviors, and unethical treatment of dementia patients towards a positive model. Through such education and training, it is possible to sensitize members of the public and caregivers about the causes and implications of the condition in patients’ lives. In this way, healthcare systems and authorities can influence positive treatment of dementia patients by introducing compassion, sensitivity, and better ethics in relationships and interactions between the caregivers and members of the society, on one hand, and the dementia patients, on the other. Training and education would provide the information that is vital to change social attitudes away from ignorance towards informed opinions. It would also address the problem of conflicts of interest among professionals involved in the care of dementia patients as discussed earlier through sensitization of the need for fairness in performance of caregiving responsibilities towards the patients in both healthcare settings and in families or local communities.
Scarcity of proper screening and diagnostic instruments for dementia for use among elderly citizens from ethnic and racial minorities in developed countries: Advocacy for the rights of minorities and balanced allocations of resources to address inequalities in the access and use of screening and diagnostic services are important strategies to address this problem. Advocacy involves the use of media campaigns, publications of research, public speaking, and demonstrations to influence decisions in economic, political, and social systems. Advocacy is important to sensitize the society about the problems of imbalanced allocations of public resources and disparities in the access and use of these resources among minority groups. Through advocacy, it is possible to influence the decision-making processes of political institutions to address these disparities through balanced resource allocation.
Lack of community-based support services for patients and their families: Civil education and training can address this problem through sensitization of the public about the implications of dementia and the lived experiences of dementia patients. In this way, local communities can grow more sensitive and responsive to the needs of these patients and invest in the provision of appropriate and adequate community-based services for the benefits of these patients.