The problem, as the article notes, is that treatments for Alzheimer's dementia are not effective. The test is about knowing for sure - period.
I'm interested to hear what other folks think about testing. We at GeriPal are obviously big proponents of estimating prognosis (see ePrognosis), but testing for Alzheimer's strikes me as both similar and different at the same time.
Knowing your prognosis can help with a whole host of decisions, such as medical decisions like screening for cancer, or life decisions such as spending time with the grandkids while you're still able. Testing for Alzheimer's may also help clarify such health decisions and life choices.
But do you really need to take the test, at a cost of several thousands of dollars out of pocket, to know? If you're showing early signs of dementia, then it is most likely Alzheimer's (Alzheimer's is overwhelmingly the most common cause of dementia). And what shines through in the stories from the New York Times is the sense of helplessness experienced by the people who find out.
Perhaps the problem is a reflection of our sad state of palliative options for people with dementia. We have no cure for the disease, and can't even slow its progression. But we also have too little to offer in the way of palliation for those living with the disease. And our society offers almost nothing in the way of support for the families who care for people with Alzheimer's, who struggle in isolation, untrained and unprepared, at a major financial cost.
Insurance wont pay for this. In New York the affluent are paying $3,750 for the scan. Eli Lilly makes Anvid, a dye that binds to the Beta Amyloid plaques in the brains of people with Alzheimer's and lights up in a PET scan. One worries too that the testing industry is profiting off of people's fear.
So...what do you think?
by: Alex Smith
Comments
Sure, early diagnosis helps patients and their families prepare and reassess priorities, as you mentioned, Alex, but early diagnosis also opens research pathways. Patients can enroll in studies; researchers can expand their knowledge of the disease.
Diagnosis is necessary for finding eventual effective treatment.
Nothing was said in the article about testing thyroid function, or for vitamin deficiencies that can cause dementias.That should be done, no matter what, so that people do not have to unnecessarily endure the ravages of a dementia. I find that that testing has been neglected by many PCP's of my clients. I am a geriatric care manager who only works with dementia patients and their families. I have seen this lack of testing for treatable causes far too often.
Benzos for insomnia or anxiety are a common worsening agent, as are all the anti-cholinergics (prescribed for allergies, OTC sleep, overactive bladder, etc)
So I hope a positive test won't keep patients and clinicians for identifying other contributors.
In general, my knee-jerk reaction is to object to the scan, but I'm trying to be open to reconsidering this.
To be sure, testing might certainly be helpful in those cases where it is NOT Alzheimer's, but a treatable form of dementia. But it's not clear to me how necessary it is to have a negative test for Alzheimer's to establish the other diagnoses (like Lewey Body).
And Mom, thanks for pointing out that with support and engagement, it seems that many patients with Alzheimer's can experience a high quality of life. Keep up the good work!
When I was volunteering to drive folks to the polls on Election Day, he commented, “Maybe I should volunteer too.” He shouldn’t be driving at all, let alone driving other people! Why does he still have a license? Because he does not recognize his own impairments (this is common with his condition). If we had an Alzheimer’s diagnosis, the license could be revoked.
I list my husband as successor trustee for my accounts, because that’s the way we’ve arranged our estate planning. We should really have this changed. But again, when he can’t understand his own impairments, and cannot reason, how do I setup that appointment?
No there are no current treatments. But there are clinical trials. They would be an option I could discuss with my husband if we had a diagnosis of Alzheimer’s.
My husband is the main salesman for his company – 95% of sales. There are 300 families who depend on him for their jobs. He has lost 30% of his sales in the last year. He should have retired a year ago. While his boss knows about his MCI diagnosis, it is obvious he does not understand that it involves more than just forgetting a few things. My husband had a misunderstanding about pricing that could have led to a $500,000 revenue shortfall. I'm not sure how much was actually lost before his boss recently spotted the problem. (I have a feeling his boss may begbe beginning to understand now.) A diagnosis might save this company and all those jobs.
I could go on and on, but hopefully you get the point.
I beg you to start taking the reigns now, before the big disaster occurs. You don't need a formal diagnosis to do that. Alzheimer's is just a word. Your husbands actions or lack thereof are the issues at hand here. If you can find it within yourself to become the "leader" starting now, you could head off some of the potential crises which are to come. solicit the help of others, the doctor, your lawyer, your minister. Yes, it takes courage to reverse the roles, but it is truly the lesser or the evils to come.
Regards,
Jenny | Recetas Faciles