In King Lear, one of the supreme works of the English language, William Shakespeare details the tragic plight of the impaired elderly as they exit the public stage. Lear, the formerly powerful fictional king, has divided his kingdom unwisely in “the infirmity of his age”. This incomprehensible act, which no one was willing to challenge, ultimately leads to a brutal internecine war in his kingdom and results in his death as well as that of his children.
This Shakespearean tragedy takes on added relevance because of the epidemic of Alzheimer’s disease ravaging the United States today. More than 5 million people currently have Alzheimer’s, the country’s seventh leading cause of death, according to the Centers for Disease Control and Prevention.
Alzheimer’s cases have risen by 10 percent in the last decade and currently include more than 5 percent of individuals over the age of 65 and 40 percent of those over 85. The number of cases is predicted to surpass 15 million by 2050. These sobering statistics include only official counts, cases diagnosed in hospitals and medical clinics. There are an undocumented number of housebound patients who are by themselves every day because their families can’t afford sitters.
The total costs of care, Government and private, for Alzheimer’s patients is staggering, approaching $ 200 billion annually. The human toll on caregivers and family members is incalculable.
In the wake of this epidemic, neurologists and geneticists have accelerated their search for the Holy Grail of Alzheimer’s research – an early predictor of who will develop the disease. Screening proceeds apace for biomarkers like the apolipoprotein E (APoE) gene and positron emission tomography (PET) scanning tests that detect amyloid deposits in the brain and may foretell dementia.
But as medical centers and universities explore this issue, bioethicists debate whether patients should be told their results, should predictive tests prove reliable at some point. Expressing a sentiment common among some aging Baby Boomers, Susan Jacoby, author of “Never Say Die: The Myth ad Marketing of the new Old Age” recently wrote, “I do not have the slightest interest in those new brain scans or spinal fluid tests that can identify early-stage Alzheimer’s. What is the point of knowing that you’re doomed if there is no effective treatment or cure? As for imminent medical miracles, the most realistic hope is that any breakthrough will benefit the children or grandchildren of my generation, not me”.
While this decision ultimately devolves into an issue of personal autonomy, as a practical matter, there are valid reasons patients and close family members should know about a positive test. There may be no imminent medical miracles but there are a number of practical measures patients and caregivers can take before the disease takes hold and the patient loses mental clarity, processing ability, and the power to communicate.
After a positive test, these steps include:
1. Specific medical measures. While the patient is still able to provide their physician with feedback, a comprehensive physical examination is essential. Especially important, while the subject can still communicate and has not become physically unmanageable, are visual evaluation so eyeglasses can be updated and having any necessary dental work performed. The patient should receive a Medic Alert bracelet.
2. Preparing a “Watch Alert”. At some point, the line will be crossed when a patient is no longer able to drive or cook. Family members and caregivers should watch for signs indicating this is imminent and take steps to terminate these activities. Eventually, the house will have to be “childproofed’, with especial attention to potentially dangerous electrical outlets, fall precautions, knobs removed from ovens and stoves, and consideration to interior deadbolt locks when a caregiver is present.
3. End of Life Considerations. While the patient is still mentally clear and functioning, they should communicate any changes they want made to their last will and testament, including funeral arrangements and burial site. The patient should arrange to have a Living Will and/or a Durable Power of Attorney for Health Care, ensuring their wishes for end-of life care are explicit.
One of the goals of an enlightened society is to ensure those with dementia, who can no longer pursue their lives’ work and dreams, can be made happy, safe, and secure. To assist with this, patients, family members, and caregivers would be well-advised to be informed if future testing suggests the likelihood of contracting Alzheimer’s disease. A preferable real-life model to the tragedy of King Lear is the famous American essayist Ralph Waldo Emerson, who developed severe dementia in his late sixties and could no longer write or lecture. Despite this, Emerson retained his sense of irony and humor. When asked how he felt, even in his state of advanced dementia Emerson would smile and answer, “Quite well; I have lost my mental faculties but am perfectly well.”
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