This place is relatively new in Denver. Where was it 5 years ago when I literally had to ASK my doctor to order a PET scan. This technology looks even more advanced in the diagnosis using a PET scan. http://www.mindgenesis.net/

Our pcp said to hold off on the PET scan. Sometimes I think they can't justify the cost to the insurance company unless the patient's family demands it. I don't think an official diagnosis would have made much difference in our case. PCP tried prescribing Aricept and Namenda and after six months dh refused to take it because of side effects. Then it was the Exelon patch which was well-tolerated but hubby refused that after a while.

Unfortunately the VA will not pay for a PET scan. His diagnosis is based on MRI, CatScan, neuropsych testing and family history. Wish we could afford the genetic testing - if he carries the gene then his nieces would know there is a genetic component. If my hb does not have one, then the chances are their mother does not either (she was diagnosed in 2005) and they have no greater chance than anyone else of having AD.

Charlotte, the VA paid for Lynn to have a PET scan. I wonder if this is yet another thing that is different in each state? Josh, would you mind expanding on why you feel that way?

The problem with a PET scan is that it is a very imperfect test. The non mathematical answer is that clinical impression by a really good physician will always trump the test. In other words, if the test says that the person does not have alzheimer's but the patient still seems like they do have alzheimer's to an experienced physician, you ignore the test. If the test says that the patient has alzheimer's but clinically they don't seem to, then you ignore the test. If the test agrees with the physician then you've gained nothing. In the hands of clinicians the PET scan can be horribly misinterpreted. The following is the mathematical answer: (the test is 93% sensitive, 67% specific)

For a population of 1000 people in which 10% actually have AD (i.e. early screening), out of the 426 people who test positive, only 93 actually have AD and 333 will be misdiagnosed (28% accurate). Out of 574 people who test negative (no AD), 567 people will not have AD but 7 will (98% accurate). So in early screening, it is a good test for making sure someone does not have AD but it is not good for seeing if someone has it. So instead of being 90% sure that someone doesn't have AD, you will be 98% sure. But the positive test results are tricky.

For a population of 1000 people in which 90% actually have AD (seems like AD but could it be something else), out of 874 people testing positive, 37 will not have AD (96% acurate). Out of 126 people testing negative, 63 will actually have AD (50% accurate). So if the test is positive, instead of being 90% sure, you'll be 96% sure. For those who test negative, 50% will still have AD and you'll ignore the result.

For a population of 1000 people in which 50% have AD, 72% of people testing positive actually have AD and 90% of those testing negative will not have AD. 72% is too low of a number to take seriously. 90% is pretty decent.

A clinician has to have a sense of whether a person is likely, somewhat likely or not at all likely to have AD BEFORE ordering the test in order to interpret the result. If a lot of physicians screen people early, there will be a ton of false positives. If you screen early and the test is negative, then it is somewhat reassuring but not much because AD can still develop later. My fear is that a bunch of physicians will start ordering the test instead of using their clinical skills and come up with a bunch of wrong conclusions.

At the end of the day, the test may be able to rule out AD much better than it can make the diagnosis.

I agree m-mman....I tried to get the autopsy done, but could not get my dw to agree to it....I tried to use the dpoa, but the hospital would not accept that either...I went to the local county fair, and found the man who guesses people's weight, age, or whatever.....It cost me $2.00 and I got the proper diagnosis right away...and a large stuffed animal to boot!!!
I got the second a second opinion from the Madame Mystique machine..I put my quarter in and asked my question...does my dw have alzheimers...the answer was "it is in your future"..so I advise all of you to go to a fair....ride the roller coaster so you will experience what caregiving will be like, then head for the guesser and the Madame Mystique......Might cost you $10.00, and it is not covered by insurance...but at least there is not a co-pay, nor a deductible..

MMan..I agree. I was left out in the cold..all I had was a disc of the pet scan, a copy of the report, and it was not discussed by her pcp. I received much more instruction when I had stitches for a wound...at least they told me how to remove the bandage, and even how to remove the stitches....
With EOAD, all I received was a polite shrug of shoulders....But thanks to Joan's site, I was able to glean enough information, and managed to become a reluctant caregiver.

m-man, our situation and "diagnosis" was similar. I had to advise pcp about DH's memory loss. After CT scan, aortic ultrasound and stress test, neurologist looked at a copy of the CT scan and said "nothing looks very unusual for a man your age (58). then prescribed celexa. NEVER gave us a diagnosis face to face. At follow-up appt he gave DH the starter pack of Namenda, still no diagnosis. When I asked if DH had Alzheimers the response was "not necessarily" . Then why are you prescribing Namenda? No answer.
Only after I requested copies of the doctors notes in my husband's file did I find out the diagnosis was "pre-senile dementia, probably Alzheimers". And he radiologist's report stated significant brain atrophy. The doctor was a COWARD- he deliberately did not tell me his diagnosis. Oh and his professional recommendaion on how to prevent the physical abuse I was suffering from my husband's dementia behaviors was to buy pepper spray and spry him when he got out of control. We didn't get a diagnosis much less any other information that would have helped us through those very difficult, dark days. Thank god for this forum and Jaon.

Dr. Josh - I applaud you for your advocacy....the medical profssion needs to be etter informed about EOAD and willing to discuss this very difficult diagnosis and what it means to the family's life. I had no idea that DH's diagnosis would mean job loss for BOTH of us and forced retirement before either of us was ready. We are no longer able to "save for future retirement" and are drawing from our savings MUCH sooner than planned and withdrawing much larger sums due to the costs associated with this illness. FAMILIES NEED TO KNOW.

Hey Mmman
you're right. I don't disagree at all. one thing they don't teach in medical school is humility: knowing the limits of one's knowledge and being comfortable enough to admit it. We need all doctors to not make things up, not shoot from the hip, not wing their medicine, not blow things off as unimportant or not worthy of serious consideration, not practice superficial medicine and not be satisfied with ignorance. (and admit to being wrong)

The reality is that out of 24,000+medical school grads, only 90 do geriatrics. (http://www.adgapstudy.uc.edu/faq.cfm). What patients and families can do is advocate for health reform, especially reimbursement reform. Geriatrics is the 2nd lowest paying specialty. It's the only specialty in the US where doing extra training means you get a lower salary afterwards. Those who are in it already don't care (otherwise we wouldn't do geriatrics if we did) but if we want more than 2 new geriatricians per state, that has to change. I hate to sound too pessimistic, but with fewer and fewer geriatric fellows, there's a chance the specialty may cease to exist (I've heard several academics voice this concern). My own fellowship program no longer exists in New Jersey because the hospital wouldn't fund it anymore. I train around 70-80 resident physicians and about 50 medical students a year but I don't know how much sinks in. Where I am at Penn, they've halved the amount of geriatric training for the internal medicine residents this year from 4 weeks over 3 years to 2 weeks over 3 years. Sad.

The other thing is for families to develop collaborative relationships with their physicians (although some physicians aren't interested in this). Bounce things back and forth. Keep the relationship two ways/mutual. Physicians are an insecure bunch and are easily threatened by informed families (although they should welcome this). I have no problem admitting when a family knows more than me about something! (temporarily that is).

I showed this thread to a couple of residents this week. None of them had ever been given structured teaching about how to give advice to patients/families! I decided that's going to be my next lecture I prepare.
josh