Longevity and Long-Term Care: The Medical Crisis of the 21st Century : Part 2

Throughout the 20th century, most Americans saw “longevity” as a goal. If we took care of our bodies, we reasoned, we could “live longer and better.”

But in the 21st century, I suspect that some of us will learn to fear “longevity” the way we now fear cancer.

This is the second in a series of posts that will explore the anguish that some experience when they live into their late eighties and nineties–and how we, as a society, can address the hardships of “old, old age.”

                                           Senile Dementia   

Thanks to better diets, exercise, and advances in medical knowledge, more and more of us are living to four score and seven. But the downside is that in too many cases, our bodies are out-living our minds. As I note in the post below, since 2011, 40% of the increase in Medicare’s outlays can be attributed to spending on Alzheimer’s patients.

Why is the incidence of Alzheimer’s (AHD) spiraling? Because we are less likely to die of heart disease or strokes, millions of Americans are living long enough to be diagnosed with senile dementia. One could say that longevity is the proximate cause of Alzheimer’s.

Because women live longer than men, they are more likely to fall victim to AHD, the most common form of dementia. If a woman lives into her 60s her risk of being diagnosed with Alzheimer’s at some point over the rest of her life is 1 in 6. By contrast, for breast cancer, her risk is 1 in 13.  By 2050, the number of people age 65 and older suffering from Alzheimer’s may well triple, rising from 5 million to as many as 16 million.

Why then don’t we hear more about this scourge? Because at this point there is little or nothing that doctors can do to stop it. The Mayo Clinic’ website explains: while some drugs can “temporarily improve symptoms of memory loss and problems with thinking and reasoning . . .  these treatments don’t stop the underlying decline and death of brain cells. As more cells die, Alzheimer’s continues to progress.”

Last month Consumer Reports warned that “the overall results” for Alzheimer’s drugs “are far less encouraging than the ads portray. Most people who take them don’t experience a meaningful benefit.

More than half experience side effects. And they’re expensive, costing anywhere from $140 to more than $656 monthly..

Even a small benefit or chance of improvement might be worth it if Alzheimer’s drugs were risk free,” Consumer Reports observed. “But they are not. They can cause side effects such as insomnia, nausea, muscle cramps, diarrhea, and reduced appetite, all of which can be troublesome for people with dementia.” Occasionally, the drugs may cause more serious side effects such as internal bleeding and a slowed heart rate that could be potentially dangerous.

Meanwhile, the average Alzheimer’s patient lives 8 years—and 40% of those years are spent enduring the most severe, late stages of that disease. Some patients linger for 20 years. This is what makes Alzheimer’s so expensive.

                                The Need for Long-Term Care

At this point, we cannot cure senile dementia, but we can reduce the suffering that patients and their families endure by creating the long-term palliative care system that millions of baby-boomers and many of their parents will need. First, this means figuring out how to fund such a system. Medicare pays for some treatments, but it does not cover long-term care.

Up until now relatives have provided much of that care at home, but increasingly, the burden is becoming too great for aging spouses. And even if their children live close to home, daughters as well as sons have jobs that they cannot leave.

Medicaid will pay for nursing home care, but only after the patient and spouse spend down nearly all of their resources. (New laws now make it very difficult families to transfer assets to heirs when they see Alzheimer’s coming.) And even when families exhaust their assets, nursing homes and hospices often do not provide the combination of palliative care and skilled nursing that patients require.

Finally, and most importantly, we need to think about how to ease the path to death. Here, I am not talking about euthanasia. (In a later post, I will address  “aid in dying” –a.k.a. “physician-assisted suicide”–and explain why some palliative care specialists have had second thoughts about that solution.)

In this post, I am focusing on reducing the fear, the panic, the overtreatment, and the medical flailing about that makes what I have called “the American way of dying” so traumatic. Death always will involve loss and suffering, but it does not have to be impossibly cruel, and it does not have to wreck families.
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