Introduction:
The debate over whether to test for incurable diseases has been ongoing for years, if not decades. In this article, we will explore several perspectives of bioethicists and their arguments. What incurable diseases? What exactly are the concerns? Why does this matter?
Contributions of Medicine:
Undoubtedly, advancements in medical practices have greatly contributed to life expectancies across the globe. A diagnosis made by a medical professional drastically decreases the risks of the worsening of fatal symptoms in patients.
Incurable diseases:
In this article, we will focus mainly on Alzheimer’s disease. It is the most common form of dementia, a rapidly increasing disease factor within the aging population. It is generally considered ‘incurable’, but there are prevention and progression-affecting procedures.
Currently, the FDA has established two categories of procedures for Alzheimer’s disease:
Stabilization of symptoms for a limited time by the use of drugs.
Slow down the progression and the rate of damage to brain cells. (Anti-amyloid antibody IVs: Aducanumab, Donanemab, Lecanemab)
About Alzheimer’s:
According to the World Health Organization, Alzheimer’s disease (AD) is a neurodegenerative disease that usually starts slowly and progressively worsens over time. ‘Neurodegenerative’ means the loss of nerve cells at a gradual rate, leading to a decline in neural activity which affects an individual’s cognition and other essential functions. Other similar diseases include Parkinson’s disease and ALS (amyotrophic lateral sclerosis).
Alzheimer’s Statistics:
According to the Alzheimer’s Association, 7 MILLION Americans are living with Alzheimer’s.
Leading states: California, Florida, Texas
It is estimated that the dementia population could reach as high as 131.5 million by 2050 worldwide. This is alarmingly impacting our society in terms of global burden due to its prevalence and long-term care needs. It causes a great strain on facilities, resources, and research for treatment. Scientists have come up with possibilities that narrow down to finding what causes Alzheimer’s in the first place.
How should we take action?
The most reasonable answer would be to test for the presence of this disease, to detect it in the earlier stages. Although this does not completely prevent our population from the disease, we would be able to slow down the progression of its symptoms.
Testing for Alzheimer’s typically involves cognitive and neuropsychological testing, and analysis of genetic makeup to look for patterns and linking conditions and/or symptoms. This could be a combination of many forms of evaluation and sometimes brain imaging.
Issues arise when the diagnosis by health professionals becomes widespread. Cases of increased anxiety and depression in patients have been reported. Those who have been diagnosed with terminal illnesses were twice as likely to commit suicide than a person without a terminal illness. It is unclear, whether the awareness of the possession of the illness is what causes low morals, and depression-related mental health, or not. However, it is straightforward that symptoms of many terminal illnesses are often debilitating and cause severe depression in many cases.
Even though this factor seems like a good reason to argue against early diagnosis, it is quite the opposite. Proper diagnosis and preventive measures help with the addition of 12 years, on average, to an individual’s life expectancy.
Being diagnosed with a terminal illness causes a substantial amount of turmoil in mental health. As established prior, many patients with lifelong diseases have significantly decreased morale, low motivation, and oftentimes present with a depressed mood. They may also have chronic pain, anxiety, fatigue, low self-esteem, low libido, and insomnia. It is important to note that while the diagnosis itself can cause the patient to lose hope, symptoms of the disease itself cause just as much distress, if not exceeding the amount that could be reasoned by the foreseeing through professional screening.
Even without the presence of a clear structure of cure, there are still various steps that patients could take to improve their quality of life, given that the individual is aware of their possession of that disease. This way, many prospective patients take the matter more ‘seriously’ in an attempt to modify their risks.
Modifiable Risk Factors
Physical activity: Aerobic activities & brisk walking
Healthy Diet: Rich in multivitamins
Social & Mental Engagement: Family contributions
Healthy sleep habits
Avoiding smoking and excessive alcohol consumption
Brain injury prevention: road safety
If one member in a family tests positive, there is a higher chance for others to inherit the disease. Although Alzheimer’s disease isn’t the type to spread through contact, it most likely runs in genes. A study by PhD researchers of a preventive registry found that individuals with a family history have improved awareness of that disease. These two facts link together to bring us to our next claim:
Even when certainty is low, families take extra caution with their lifestyles and diet. This helps them slow down the progression of the symptoms of Alzheimer’s, such as memory deterioration.
In quote to a pie chart by AmicusBrain, 4% of all Alzheimer’s patients in the U.S had it developed at the age of 65 and under. Most of these cases have been reported to have a genetic link to another Alzheimer’s individual.
Bioethicist, Gregory Pence, found that only 40% of Alzheimer’s patients are genetically related to someone else with the disease. This means that the other 60% is a much more ‘random’ occurrence, or that it relates much more significantly to our lifestyle.
Conclusion
With that being stated, it all depends on the recipients themselves, whether or not to test for terminal illnesses. They have every right to choose whether they would like to prevent the risks of mental difficulties of living with the awareness or to prevent the risks of progression of the actual illness. It is not the proper act for researchers or studies to claim a winning ground for people to follow. Instead, it is to choose between what the patient feels strengthened about. This article has been written in hopes of framing the perspective of patients and family members to take preventive measures and to encourage all our Alzheimer’s friends to keep their heads up.
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