July 19, 2021 | Vox
The harrowing new reality for Alzheimer’s patients
Alzheimer’s disease is, among all the ailments that afflict humanity, perhaps the most terrifying: a disease that robs a person of their identity and disintegrates their relationships; for which there is no proven treatment or cure; and that can last for years, requiring enormous sums of money to ensure that many patients have specialized or round-the-clock care.
And it all leads toward an inevitable destination: death. Because this is also a disease with a 100 percent fatality rate.
People are desperate for any way to slow it down.
“‘I can’t read a book.’ ‘I can’t make a meal for my friends.’ I think that’s what’s uniquely devastating about the disease,” said Jason Karlawish, a practicing physician and researcher who published The Problem of Alzheimer’s earlier this year. “You meet someone who has the disease and they are not the same. Is what’s coming out of them still their mind or is it the disease talking?”
The other is the breadth of the population affected: the 6 million Americans who have been diagnosed with Alzheimer’s and their families, and a much broader group who have reason to fear that they might someday have it, too. As many as 47 million Americans could be living with preclinical iterations of the disease, according to one estimate from researchers at UCLA, although not all of them will end up experiencing the dementia that is its hallmark.
Emily Largent, a medical professor who works at the Penn Memory Center and has conducted interviews with people who discover they may be at higher risk of the disease, remembers vividly how one of her subjects described the distinctive horror of Alzheimer’s.
“A colonoscopy isn’t going to change who I am,” the person said. “But this is my brain.”