Friday, November 16, 2012

Without a Treatment, Why Test for Alzheimer's?

The New York Times has a front page (at least online) story today about testing for Alzheimer's Dementia.  The story follows a 61 year old woman who has started to forget things.  She undergoes testing for Alzheimer's and the test is floridly positive: she has the early stages of Alzheimer's dementia.

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

11 comments:

Anonymous said...

The problem with assuming the horse (alzheimers) is that the zebras don't get treatment that could significantly help them. My father has lewey body dementia and aricept has given him several years of better functioning. My guess is that there is significant over diagnosis of alzheimers, leading to under treatment of LBD. Of course, it's cheaper to try aricpet than to spend $1000 on a scan. Personally, I think I would want to know, but my memory issues are still in the post menopausal range, so that's all hypothetical

Jordan said...

The first step in solving a problem is understanding it.

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.

Carole Larkin said...

Testing for Alzheimer's allows for people who show positive to address legal matters which can be of great importance later on in the disease. At the early stages of the disease persons can make their own decisions who they want to be their medical and financial power of attorney and discuss their wishes with them,thus giving them power to control their own destiny's.The same goes with their directives to physicians. It helps end squabbles or outright fights among their children later on in the disease.
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.

Margo Smith said...

As cases of dementia and Alzheimer's increase, there is a growing recognition for support for those with the diagnosis and their caregivers, whether care at home or in institutions. I led a tour for mid-stage patients in an Alzheimer's unit and their two care givers at the MSU Museum of Natural History, Science, and Culture. We observed a diorama habitat of an elk and then compared it to a standing stegosaurus and allosaurus. The patients were able to discern objects, ask questions, and share their perspectives -- huge sharp teeth of allosaurus compared to no front teeth of herbivore stegosaurus, and reasons for habitat loss. We laughed a lot as they displayed their sense of humor. Caregivers like these outings and see their charges come alive with engagement and connection.

Leslie Kernisan said...

One problem with this kind of testing is that memory problems are often multifactorial. A person may have early Alzheimer's or another dementia, and be made worse by medication side-effect or other problems.

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.

Alex Smith said...

Thanks Anon, Carole, Jordan, Leslie, and Mom (Margo), this is a nice discussion!

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!

Marilyn Swenson said...

Visiting Angels is indeed a blessing. I needed someone to care for my mom who lives in Palm Beach Gardens, FL. She suffers from Alzheimer’s and I live in England. I was able to choose the right caregiver for my Mom. The person was experienced and had excellent credentials. I have peace of mind knowing that Mom is in capable hands. You should check them out at www.visitingangels.com/palmbeaches (561-328-7611) if you need senior care services.

Mary said...

Here’s why I want the test for my husband who was diagnosed with MCI in 2010 (he is now aged 61):

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.

Carole Larkin said...

Mary,
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.

Jenny | Recetas Faciles said...

I have my father with Alzheimer's, the truth is a very big problem for any family, my father is 70 years old, is physically fine but mentally with Alzheimer is very complicated. I find it very interesting post, it also makes me very happy that means as important as New York Times published on Alzheimer things. I think it's a disease that deserves much more thorough study.
Regards,
Jenny | Recetas Faciles

Collin said...

Such a great and informative post about Alzheimer. In this way, people will be aware on this disease.