Friday, February 1, 2013

Inquiring Minds Want to Know—Is It Really Alzheimer’s?

L.S. Fisher, Alzheimer's Advocate

There are two kinds of people when it comes to health issues—those who want to know everything and those who want to know nothing. One group falls into the category of die-hard realists and the other is filled with those in denial.

There aren’t any simple answers when it comes to health. A visit to a physician can make or break your day, and sometimes your spirit, depending on how he presents your health issues. But even more important is how you interpret the diagnosis you are given.

Getting an Alzheimer’s diagnosis is a long and arduous process. An entire battery of tests, scans, and evaluations are used to determine if you might have a treatable condition. Once other conditions—thyroid, drug interaction, vitamin deficiencies, too much calcium—are ruled out, your physician may give you a diagnosis of Alzheimer’s.

Hundreds of other related dementias exist besides Alzheimer’s. Since Alzheimer’s is the most common cause of dementia, it is the usual diagnosis. As the disease progresses, the type of dementia may become more evident as frontotemporal dementia, Lewy body disease, vascular or other common dementias. Some conditions can be determined by genetic testing—familial early onset Alzheimer’s or Huntington’s, for example.

For millions, the exact cause of dementia remains unknown or is determined by autopsy. We chose autopsy to get an exact cause of Jim’s dementia, which turned out to be corticobasal degeneration. Since Jim was diagnosed with Alzheimer’s, and not too many people know what corticobasal degeneration is, it is easier to say he had an Alzheimer’s type of dementia.

Currently, in the news is a discussion about a drug that allows a PET scan to detect Alzheimer’s plaques. The controversy is whether Medicare should pay for the $3,000 test. Opponents to the test say that it won’t help. I was floored to see the quote in the national article was from a physician in my hometown. The quote: “There’s never been a study that asked whether patients do better as a result of florbetapir testing,” said David Kuhlmann, a neurologist at Bothwell Regional Health Center in Sedalia, Missouri.

Okay, we all know there is no cure for Alzheimer’s and treatment is for symptoms only. Because of the bleak prognosis, no one seems to see a need for an accurate diagnosis. But early diagnosis is crucial in irreversible dementia for several reasons. First, it is important for a person with dementia to make important life decisions while they still can. Jim and I both signed advance directives, durable power of attorneys, and wills. Had we owned more, estate planning would have been even more important. Second, treatments are more effective in the early stages of the disease.

Putting aside all reasons for a diagnosis, and how it could actually help, there is the matter of cost, and Medicare needs to avoid unnecessary expense. So, this test costs $3,000. Expensive enough, I’d say. I’m going to throw out a ballpark figure of $20,000 to complete all the testing to attempt to rule out Alzheimer’s. In our case, most of that was paid through private insurance, and out of pocket, rather than Medicare.

Once we ruled out other conditions that could cause reversible dementia, we purchased expensive drugs that had no effect whatsoever on Jim, other than side-effects, because he didn’t have amyloid plaques. Of course, we didn’t know that until after he died. A $3,000 PET scan to find out his dementia was not Alzheimer’s, as diagnosed, could have saved many more thousands on drugs and costly emergency room visits.

I can think of a lot of scary diagnoses and can narrow down the ones that would make me take stock and reevaluate my entire life and lifestyle. Alzheimer’s type of dementia, cancer, and heart disease would be at the top of the list. I would only hope that if I were ever diagnosed with any of those three, I would be a realist and want to know every treatment available and evaluate my options to have the best life possible.

I’ll admit that Alzheimer’s, or any related dementia, scares me the most. I’ve seen it, felt it, and breathed it throughout Jim’s journey. Through my volunteer and advocacy work, I’ve met many people with Alzheimer’s and their caregivers who face the diagnosis with grace and unbelievable courage. An Alzheimer’s diagnosis affects not only your body, but your skills, communication, and a lifetime of memories that connect you to your loved ones. Have you ever thought about how empty you would feel without memories?

Isn’t it important to know what is wrong with our health, so we can either make it right, or at least do what we can? 

Copyright © L.S. Fisher, February 2013

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