Monday, February 22, 2016

Not So Fast

 I jumped the gun a little bit in my last post. It turns out Sweetie has not been approved for a PET scan. In fact he's been denied for a third time and United Healthcare (now a dirty word in our house) refused a peer-to-peer discussion with the doctor on the grounds that the appeal was denied. Denied, I might add, even though they had all the documentation they asked for that said Sweetie met their criteria.

Needless to say my Sweetie was not so sweet upon leaving.

It didn't help that all that information came after taking the MOCA (don't know what it stands for) test. 30 fairly easy questions unless you have a memory problem. Then easy becomes difficult and difficult becomes embarrassing. The questions start out with what's the date?where are you right now? Then they move up to draw a clock that reads 9:15, redraw this picture of some kind of multi-sided shape. Then come the stumpers. Remember these 5 words. Starting at 100, subtract 7 and keep going. Sweet had trouble with both. We all knew he could figure out the numbers but his brain just didn't want to work. The more it didn't work, the harder it became, followed closely by embarrassment. Eventually he just shut down.

It's not only hard for him. It's hard for me. I can't help. I can only sit and watch and try to send telepathic messages. And on that 5 word test, I'm no help at all. It is especially rough because both of us at one point in our lives prided ourselves on our stellar memories. Without a hint of smugness, I could recite phone numbers, memorize notes for tests, remember birthday and anniversary dates. Sadly, around the time I had to start holding reading material at arm's length in order to see it clearly, I had to cross my knees when sneezing and start checking my address book for correct zip codes. Having a cell phone hasn't helped.

Needless to say, we were already on edge when the PA came in to talk to us about a) the test score b) the PET scan and c) the doctor's notes - or lack of. The reason both of us were a little disconcerted last time we saw the doctor was because he, himself, questioned the ALZ diagnosis. In fact, he took it off Sweetie's chart all together. The teeny tiny silver lining to this black cloud was that the peer-to-peer conversation never took place. How a doctor who isn't sure of the diagnosis was going to convince United Healthcare that Sweetie needed the PET scan for said diagnosis remains doubtful.

Here's where the PA, Debbie, came in to play. She's much easier to talk to, answers all our questions, even the ones we repeat over and over. She makes good notes in Sweetie's chart, so there's no scratching one's head when going back to the beginning. She has a smooth, comforting demeanor which helps to diffuse a ticking bomb situation. We left with a plan we could all agree on - new request for PET scan with all the requirements documented and a change in doctors. Hopefully by April 16th we'll know for sure if Sweetie has ALZ, some other form of dementia, or just a failing memory like most other people his age.

What exactly is a Positron Emission Tomography?  Here's what I found out.

 Positron Emission Tomography (PET) is one of the most effective uses in the diagnosis of Alzheimer’s disease. Although there is currently no cure for Alzheimer’s disease, there are now new drug therapies that have been developed to delay the progression of Alzheimer’s disease in affected individuals. However, to make full use of these new therapies, early detection of Alzheimer’s is required. (And I might add, insurance companies need to be willing to pay for them.)
PET imaging has been cited as being the most accurate predictor of Alzheimer’s disease out of all of the different types of medical diagnostic imaging procedures available. A PET scan image of Alzheimers is able to show a physician the biological changes in the brain caused by Alzheimer’s disease. A recent study taken at UCLA, the California based university, have shown that PET imaging improves a doctor’s ability to forecast a patient’s future cognitive functions by up to 30%. This find relates to Alzheimer’s detection as PET imaging increases the ability of a physician to predict, in patients with early memory complaints, whether this condition will significantly worsen in the years following the initial exam.
PET scans for Alzheimer’s disease involves the administration of a radioactive tracer that is a combination of a radioisotope (a radioactive compound whose movements are detectable by a PET scanner) with a natural body compound. In Alzheimer’s diagnosis, the radioactive tracer used in the Positron Emission Tomography procedure is Fluorodeoxyglucose (FDG), which combines the natural body compound glucose with the radioisotope Fluorine-18. This radioactive tracer, or radiopharmaceutical, is used in Alzheimer’s diagnosis as the radioactive compound that it uses has a short half-life and will disappear from the body within hours. Therefore, PET scans for Alzheimer’s are safe and the patient should not have any worry about the radiation content of this procedure.Additionally, Alzheimer’s PET scans use FDG as it contains the body compound glucose. The use of FDG, which shares a similar structure to glucose, is important, as the absorption of glucose is effective in determining the metabolic activity of the brain. In Alzheimer’s disease and other forms of dementia, the brain produces a metabolic pattern that is significantly different from the metabolic pattern of healthy brain cells. As PET imaging examines the metabolic activity of brain cells by tracing how FDG is absorbed, it is able to detect Alzheimer’s disease and other forms of dementia.
Additionally, recent studies have confirmed the effectiveness of Positron Emission Tomography in distinguishing Alzheimer’s disease from other forms of dementia. This is because Alzheimer’s disease has a metabolic abnormality (bilateral temporoparietal hypometabolism) that is significantly different from metabolic abnormalities found in other forms of dementia.
PET scan of Alzheimer’s have increased in recent years as PET imaging provides a noninvasive, painless way for physicians to confirm the presence of Alzheimer’s in patients. Traditionally, autopsy or biopsy was considered the only methods to absolutely confirm the presence of Alzheimer’s disease. With PET technology, it is now possible to identify Alzheimer’s in its early phase and subsequently use new drug therapies to delay its progression.
Recent medical studies have pointed to the possible effectiveness of using PET scanning of the hippocampus as a way to detect Alzheimer’s disease while in its early stages. It is a well-known medical fact that the hippocampus, a region of the bran that is instrumental in learning and short-term memory, is affected in the early stages of Alzheimer’s disease. It is believed that through a PET scan of hippocampus that it will be possible to see the first signs of Alzheimer’s disease long before it has spread to the cerebral cortex, which damages cognitive function and impairs the memory. Future studies on the viability of a PET scan of hippocampus have been undertaken to further the use of PET scanning for detecting Alzheimer’s disease. (
http://www.radiology-info.org/nuclear-medicine-positron-emission-tomography/pet-scan-alzheimers-disease.html)
According to alz.com in 2015:

  •  "The number of Americans of all ages with ALZ is estimated to be 5.3 million.
  •  Of that 5.3 million and estimated 5.1 million are 65 and older (3.2 women/1.9 men)
  • It is estimated that half of all nursing home residents suffer from ALZ or related disorder
  • The number of Americans with Alzheimer's disease and other dementias will grow each year as the size and proportion of the U.S. population age 65 and older continue to increase. By 2025, the number of people age 65 and older with Alzheimer's disease is estimated to reach 7.1 million — a 40 percent increase from 2015. By 2050, the number of people age 65 and older with Alzheimer's disease may nearly triple, from 5.1 million to a projected 13.8 million, barring the development of medical breakthroughs to prevent or cure the disease.
  • The national tab for caring for individuals with Alzheimer's disease is estimated at $100 billion annually. (www. alzheimersfoundation.org)
  • Alzheimer's disease costs U.S. businesses more than $60 billion a year, stemming from lost productivity and absenteeism by primary caregivers, and insurance costs (www. alzheimersfoundation.org)
  • The annual cost of caring for one individual with Alzheimer's disease ranges from nearly $18,500 to more than $36,000, depending on the stage of the disease. (www. alzheimersfoundation.org)
  • One in three seniors dies with Alzheimer's or other dementia. (www.alzheimer.about.com)
  • "Alzheimer's is the most expensive condition in our country," according to the Alzheimer's Association's annual report on 2014 Facts and Figures. (www.alzheimer.about.com)
  • It's estimated to cost $214 billion, including direct and indirect costs. (www.alzheimer.about.com)



It seems to me, with numbers that staggering, that insurance companies would want to make sure the disease is diagnosed correctly and as early as possible so new treatments can be discovered. Wouldn't it be a whole lot cheaper to have a person take a pill or two (not to mention exercise, diet, etc that always go a long way to add quality to life) to slow down the disease so the patient can stay safely in his/her own home for a longer period of time, thus saving the cost of nursing homes and care facilities. Just a thought.

Just saying,
Merry ME