Alzheimer’s And The Law

Alzheimer’s has proved to be an incredibly mis-understood disease. In multiple countries it has ceased to be rendered a disease of notice. As a previous Medicine Student and now law student, I bring to light the science and the law of the disease. Alzheimer’s is a degenerative disease that many cultures cease to understand knowledge. It is one of the most vastly evolving and degenerative diseases known to man-kind. This phenomenon has not reached multiple cultural atmospheres, let alone the political and legislative atmosphere. Alzheimer’s is a quiet and deadly disease that infiltrates families on a vast scale, however, due to cultural mis-understanding, the disease proves to be of a less than to society than that is comprehended.

From my personal one-on-one experience of the disease; it is rapid, infiltrative, erosive and unforgiving. As an individual who faces the unforgiving fortune of having to look after a loved one with Alzheimer’s, you would want to know their rights, and looking in on what us non-suffers could only understand, our loved ones would want fairness and equal treatment not only in how they are looked after but their estates. 

For two seconds, let’s put ourselves inside the shoes of a person with dementia; a life fulfilled with experiences, lives of prosperity and opportunity, of hope, dreams. Now, take that away from yourself; take away your meaning of life, take away your understanding of joy, take away your understanding of self, take away human decency, take away the human right to be autonomous. We would all be left empty shells of individuals, forced to obey, whether it be their loved ones, or the law. 

In South Africa, there have been vast and culturally significant changes to our law; the Civil Unions partnership recognised on the 30th of November 2006 due to the Civil Union Act 17 of 2006 allowing same-sex marriages, all the way to fully recognised Customary Marriages Act of 1998 came into operation on 15 November 2000. 

As a growing democracy, and an evolving constitution how are the lives of the elderly left behind, particularly in South Africa. According to the Mental Health Care Act 17 (2002), there is a legal framework which provides treatment, care and rehabilitation for people suffering with mental illnesses in South Africa. The objectives of this Act are to ensures access to appropriate mental health care, protect the rights, dignity, and privacy of mental health care users and Protection against unfair discrimination and abuse.  This Act also ensures that those suffering with mental illnesses have the right to appropriate admissions voluntarily or involuntarily. The problem with this Act is that it does not stipulate nor categorise the types of mental health conditions and how those suffering from each type are protected. There is a vast range of mental health diseases, from schizophrenia, depression, anxiety as well as dementia and Alzheimer’s. Each mental health disease should be separated and categorised with their own sets of provisions of protection for those struggling. For an individual with Alzheimer’s their brain degenerates so rapidly and this Act does not take into account that they most of the time, these people no longer have autonomy. This means Alzheimer’s sufferers could be involuntarily institutionalised against their will, however, they no longer possess the capacity to refuse admission. Secondly, most health care facilities in South Africa rarely cater for Dementia and Alzheimer’s patients, which means non-regulated treatment, a lack of qualified nurses who know how to appropriately care for their patients as well as potential cases of neglect or ill-treatment due to the fact that these patients tend to require a lot of patience, understanding, and goodwill. In an already saturated healthcare system that fails to address the lack of an education of dementia or Alzheimer’s. nurses are left to fend for themselves, together with long working hours, Alzheimer’s patients tend to end up not getting the appropriate care, attention and end up highly sedated to “control” their behaviour. This is a fundamentally cruel and gross practice and handling of patients, however, this is the South African reality. 

Lastly, within the Mental Health Care Act 17 (2002), there are specific regulations and ministerial oversight; the minister of health of South Africa sets the regulations and standards of the Act and there are advisory committees created. This stands to remain an outdated Act that needs to be readdressed. 

In contrast, the United States legal system ensures to protect individuals with dementia and who have lost their autonomy as well as their capacity to make their own independent decisions. US legislation has stipulated methods of intervention for the treatment specifically for those with Alzheimer’s with an emphasis on the ethical protection of those who are vulnerable. However, there still remains questions for American policymakers, practitioners, and attorneys; should they consider learning for the approach of other international policies regarding the regulation of the protection of those vulnerable citizens facing the disease.  

Upon further research, I found an article published by Swedish University, Lund university, I found very remarkably different impetrations of law and Alzheimer’s. This article discussed the concept of “vulnerability law”, which was a whole new concept that immediately drew my attention. In South African law, our constitution is premised on democracy and the vulnerability relates to those previously disadvantaged due to racially systematic oppression, thus our Constitution primarily pertains to reparations of the country’s history. However, my interested peaked at the concept of ‘vulnerability law” which pertains to health and the elderly. 

In the article, there is a discussion of legislation and medical practice; specifically, the article highlights that legislation regarding dementia care should move away from misaligned assumptions of autonomy and should focus more on a sort of “vulnerability theory” wherein the level of an individual’s vulnerability can be measured and legislated accordingly. This approach, according to Swedish authors (Mattsson & Giertz, 2020), would better protect and support individuals living with dementia as well as their family members, ensuring the best life decisions are met whilst keeping the sufferer’s best interest at the forefront. 

Interestingly, this article challenges Sweden’s governmental focus on consent and self-determination, emphasising the alarming potential for neglect of those who are unable and no longer have the capacity to make decisions, the article also calls for individual approaches to each person. 

The current Swedish legal framework stipulates that all adults are autonomous decision makers despite taking into consideration age as well as health status. The article noted that in Sweden, dementia patients are tasked with the responsibility to make their own decisions regarding housing and treatment plans, leaving the already vulnerable with the tremendous and taxing tasks to make life decisions within their vulnerable states. Ultimately, care-givers and family members remain the last resort for major life decisions of those with Dementia. This creates a major and alarming gap in the feasibility of this concept of autonomy as patients cannot give meaningful consent to social workers, family members or care-takers. It seems that within this type of legislation, there is a large misunderstanding of how incapacitated people with dementia and Alzheimer’s truly become and how exposed they are to risks of their assets being misappropriated, and they themselves being mistreated. 

In the article, the authors use “Martha Albertson Fineman’s vulnerability theory”, which sees vulnerability as a universal human condition, not limited to age or illness which challenges the idea of treating dementia patients as a “vulnerable group” according to various, misinformed stereotypes and rather emphasises individual needs, diversity, and a governmental responsibility to provide assistance through law and social institutions.

According to Sweden’s Social Services Act, there is a stress for self-determination and consent, but many dementia patients lack capacity to decide and there is an incredible rarity in legal guardianship. The article also points out that there is unequal access to dementia care services nationally. 

These practices and legislation pose major ethical dilemmas of autonomy and protection; there is a high risk of prioritising autonomy whilst neglecting needs. There is also the element of stigmatisation of those with Dementia within society as they are labelled as the “vulnerable group” and are in a sense disregarded from said society. 

Finally, the article implores for a move away from group-based diagnoses and use vulnerability theory to design policies that recognize universal dependency and ensure state responsibility.

In conclusion, there are many varying opinions regarding the disease as well as misconceptions, throughout my research I seemed to not be able to find a country with well-established legislation that supports and protects those vulnerable. The disease remains stigmatised and misunderstood. I believe that all governments have the responsibility to protect all of their citizens and as I proceed in my legal career, hope to be a policy-maker that makes a change. Alzheimer’s proves to be a rapidly growing disease that requires a lot of research and understanding, and I believe that through action and cause, there will be a change to protect those vulnerable.  

Bibliography

Legislation

Mental Health Care Act 17 (2002)

Constitution of the Republic of South Africa, 1996

Articles

Kapp, M. B. (2001). Legal interventions for persons with dementia in the USA: Ethical, policy and practical aspects. Aging & Mental Health, 5(4), 312–315. https://doi.org/10.1080/13607860120080242

Mattsson, Titti and Giertz, Lottie. “Vulnerability, Law, and Dementia: An Interdisciplinary Discussion of Legislation and Practice” Theoretical Inquiries in Law, vol. 21, no. 1, 2020, pp. 139-159. https://doi.org/10.1515/til-2020-0007