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Breakthrough Test for Early Alzheimer's Diagnosis

category_bug_journal2.gif Except in autopsy, there has never been a way to diagnose Alzheimer's disease – until now. Last week, the U.S. Food and Drug Administration gave tentative approval to a new screening for early detection in living persons of the unique plaques that define Alzheimer's.

The test, involving a PET scan that uses a dye to make the plaques visible, is relatively inexpensive. The FDA approval is contingent on radiologists and physicians being trained in how to read the scans to help avoid false positives – something that can be done, according to the CEO of the company that developed the dye, in months not years.

A senior director at the Alzheimer's Association expects the test to be available before the end of this year.

In a New York Times story earlier this week, Dr. Norman Foster, a professor of neurology at the University of Utah, discussed a patient with a memory deficit who could have benefited from the test:

“I wish I had had the ability to do an amyloid PET scan to allow an earlier diagnosis,” Dr. Foster said. Approval of the scan, he said, “would be a historic advance in neurology and in the daily management of patients with memory complaints.”

Nothing this big comes along without new, difficult and disturbing questions. In an online video from The Picker Report, the TGB Geriatrician, Dr. Bill Thomas, and dementia expert Dr. Al Power, also a geriatrician, took a whack a some of them.

Long-term care insurance has always been unaffordable for many people and this test, as the doctors note, makes that worse, although it will be interesting to see how the new health care law, which no longer allows denial of coverage for pre-existing conditions, will be applied in this case.

And, there are workplace issues; would people be denied employment if their Alzheimer's test were positive?

The biggest personal question the two doctors discuss briefly is, of course – would you want to know, when you are still cognitively healthy, that you have the plaques identified with Alzheimer's, particularly since there is no treatment.

Practically, it makes sense. People can plan ahead and they might use their time - which could be many years still - differently than if they didn't know. But it could also be detrimental leading to depression and other life difficulties.

I've given this a great deal of thought in the past few days. If the scan showed no plaques, I'm home free and I wouldn't wonder every time I forget someone's name if I'm entering the early stages of Alzheimer's.

If the test were positive, however, I know I would monitor myself for every minor bit of forgetfulness. How far gone am I? Is my memory loss serious yet? How do I know I'm forgetting things if I don't remember what I once knew?

Is this something I want to discuss with anyone beyond my physician? Do I tell relatives? Friends? If so, when? Who decides when I am no longer capable? My physician? My health care proxy?

Because I live in Oregon which has a Death with Dignity law, would I want to take advantage of that before my mind is an empty shell? But if my brain is heading south, how would I know when I've hit the tipping point, so to speak? Obviously, one can make an informed decision to choose to die only when one's mind is coherent, so there are legal questions too.

It is difficult to work out and there are no precedents yet, no guides from others' experience.

But at my age, nearly 70, I've tentatively come down on the side of wanting to know, although I won't be first in line when the test becomes available. I'm certain there are ramifications that haven't occurred to me yet.

(I think it is an even tougher question for people who are a good deal younger than I am. Would you want to know 20 or 30 or 40 years before the disease begins to be evident? I'm glad I'm too old to confront that.)

Most of the people reading this blog are, like me, older than 50. So the question today is: do you, at your age now, want to know if your brain shows the Alzheimer's plaques? And will you have the test when it becomes available?

This is not a question that can be tossed off easily like what to have for dessert and you may not have an answer today. But I think it is useful for all of us to begin the conversation.


At The Elder Storytelling Place today, Lyn Burnstine: That White Stuff


Comments

Very interesting question. So far, all I know about dementia is based on the experience of people who have, or people who care for people who have, dementia without knowing they have dementia. How would it be different if you knew you had it? My father had it and died before it got really bad, but his quality of life was pretty good while alive. It was hard on my mother caring for him though. Would your quality of life be better if you knew and had made some preparation for it?

I think my reaction is similar to yours, Ronni, yes I like to know but I might hold off until I see how it unfolds for the first-adopters.

I would want to know. While there is no cure for Alzheimer's at this point, science is trying to come up with a cure. Also, if I know about it ahead of time, I think maybe changing diets, certain excercises, etc. might hopefully slow down the process. I think family members should be aware also, so they could be aware of what to expect.

I think we all monitor ourselves for forgetfulness as do those who love us. Since there is no treatment I would definitely not want to know!

My dad's death was from Alzheimer's.

My sister has dementia.
I once read a story that described Grandma in wonderland, and that pretty well sums up where my sister is at this moment in time.

I know there is a difference between dementia and Alzheimer's, and when my sister was in the hospital hallucinating from the medications given to her, her actions were very much like Alzheimer's.

I seem to exhibit no signs of memory loss.
My Great-Grandmother died fully cognizant at age 96, and my mother died at age 89 brain powers intact.
Both women were angry at their bodies for failing them.

I just have this very strong hunch I won't get it.
I get to be the captain of the ship that helps steer my sister into port.

My father and mother both had either Alzheimers or senile dementia. No autopsy was done, so we don't know for sure. I keep close tabs on myself - watching and waiting. I'd take the test in a heartbeat. If positive, I'd embark on my Bucket List and stop accumulating stuff.

Yes, In 89 something happened that caused a loss of my short term memory. Many years later there was a diagnosis of stroke....but what if it wasn't. I would very much like to know. I would like to be able to plan my future as best I could now.

Thank you so much for this news.

The old executive monkey situation.
It would be important to know thyself before taking that test.
I don't believe I'd want to know. I could just imagine squirring around in my head all the time wondering, "Is this it? Am I moving along rapidly now?"
And I wouldn't want to be looking at my husband with a magnifying glass either. It's bad enough with all we do know as it is.
What we really should do is, as they say, "Live each day as if it's your last."

I think I'd want to know, so that I could plan my later years and let my family know what I prefer, regarding health care and where to put me when I am no longer able to be at home.
My birth father died at age 52 from brain cancer, but my mother lived to be 85 with only a little forgetfulness. The chances are slim, but I'd still like to know for sure.

Diagnostic Breakthrough Promises Early Detection Of Alzheimer's Disease Article Date: 25 Jan 2011 - Medical News Today
Canadian researchers have taken the first step towards a major breakthrough in the early detection of Alzheimer's disease. Mississauga, Ontario-based Amorfix Life Sciences Ltd. has announced that it has developed a new diagnostic test that is able to measure clumped protein fragments, called aggregated beta amyloid, in human cerebral spinal fluid which may indicate the presence of Alzheimer's disease and will make it easier to accurately diagnose the disease.

Currently, the only definitive diagnosis for Alzheimer's is a post-mortem examination of brain tissue to identify the presence of the proteins that lead to plaque formation around neurons in the brain, believed to cause the symptoms of the disease. The Amorfix test is conducted on the cerebral spinal fluid from living patients, representing a significant step forward in early detection and subsequent treatment of the disease.
"Our hope is to one day be able to use this test on patients showing early signs of dementia in order to predict which patients may progress rapidly into the disease and which may not," said Dr. Robert Gundel, Amorfix president and chief executive officer, noting that the early diagnosis of a disease typically means a better outcome. "Being able to accurately determine who has the disease will also facilitate new research in the area and will greatly enhance the quality of clinical trials for new treatments being developed," he said.
Preliminary results suggest that the company's newly-developed biochemical test can detect the presence of the aggregated beta amyloid in the cerebral spinal fluid which is collected when investigating patients for Alzheimer's. The next step is to optimize the test for commercialization by comparing hundreds of spinal fluid samples from patients with the disease to those from age-matched individuals without the disease.
The first application of the test will be in the area of research, where it could be used to more effectively screen patients who participate in clinical trials. The current methodology to test for Alzheimer's includes cognitive testing of memory and can have as much as a 30 to 35 per cent false positive result, says Gundel. "That means clinicians are potentially enrolling a significant number of subjects in their studies who don't really have the disease they are trying to treat and that makes it very difficult to determine how well your drug is working," he said. "An accurate diagnostic test like the one we're developing can dramatically facilitate research and development efforts and hopefully get new treatments out on the market sooner at a lower cost."
Alzheimer's disease currently affects more than five million people across North America and that number is expected to grow as the population of baby boomers ages. The breakthrough by Amorfix represents an important milestone in furthering the early detection and subsequent treatment of the disease. The company is also working on a project to take the same biochemical test and adapt it to measure the same substance in a patient's blood.
"That's the holy grail," said Gundel. "Because then it's just a simple blood test which would totally revolutionize the way the disease is diagnosed and treated. We have already been able to measure aggregated beta amyloid in the plasma of a number of animal models used for Alzheimer's disease preclinical research which helps pave the way for the development of a test for humans.
Source: Amorfix Life Sciences Ltd.

I might want to take the test in 5-10 years (I'm 63 now, still on the job and functioning OK). So far I don't think I'm showing any early signs, and am not all that worried about Alzheimer's. But one grandparent suffered from some kind of mental senility, so it might seem more relevant to me in a few years. Since I live alone, if I did have it, knowing would affect my plans and assumptions about what it'll take for me to cope with life as I age.

I probably would not have wanted to know when I was younger. It would be like having the Damocles sword hanging over your head.

Now at my advanced age I would want to know and I would take part in a study if available. If observing my disease could help find the cure I would be willing to participate.

As Easydriverchris noted, I would stop accumulating and I would start giving away all unneeded items. If I were still able to travel I would certainly use the money I had saved for long term care to see the wonderful world while my mind was still capable of appreciating the experience.

I still have a long bucket list and would emulate Jack Nicholson and Morgan Freeman. I would change my life to fit the circumstances, as we all must do as we age.

As I understand it, or have understood it, our Death with Dignity law is only for the terminally ill with 6 months to live which means maybe a person could sign something when still mentally capable and it would be used at the last but certainly not at the beginning of any diagnosis as Alzheimer's patients live a long time in some cases.

I wouldn't have such a test right now at 67 because I don't notice the symptoms of it nor has anybody around me seen I am showing too much forgetfulness; but when I get older, I think I'd want to know and would have it. As you said planning would be helped. And if i started to forget things that I shouldn't, that were beyond what I have always managed to forget, well I'd want it then even at my age.

First off, just as they've discovered this test, there is other research suggesting that the plaques are not necessarily a conclusive sign of Alzheimer's.

Second, there is something you can do: medication alone bought my mother at least two years of life, and, even in her very diminished state, she valued living. (Which raises its own interesting question about which "self" gets to decide to live or die - the pre-Alzheimer's self who is horrified and terrified, or the the afflicted-with-Alzheimer's self who enjoys a nice foot rub and a dish of ice cream?) Even earlier, medication greatly improved her cognitive skills.

For myself, what I hope is that, if I run true to family history and get some life-threatening disease in my 70s, I have the wherewithal to take the test, giving myself the option to let something kill me before the Alzheimer's does. I'm watching my aunt go downhill with what's apparently Alzheimer's now; had she let a heart condition take her at 75, she's have skipped this - but then, she'd have lost 10 good years. Tough questions.

I will consider it but for now I think not. I don't want to know. I'm a worry wart and there's no cure. My parents were both quite sharp mentally when they died, Mom at 74 of emphysema and Dad at 86. I have hopes and expectations of following along in their path. Life can trick us so I have begun acting on my bucket list and simplifying my life.

Did you perhaps see the piece on the CBS Sunday Morning Program this last Sunday about the CBS Reporter whose CBS Reporter Wife has the disease? How sad. The amazing information on the show was no cure and that 16 million Boomers will get the disease. With the money a CBS Reporter makes (plus great Long Term Care Insurance, perhaps) that family can afford an Assisted Living Facility which can run five, six, seven or eight thousand dollars monthly.
But what about most people?
What about the number of new Facilities that will have to be built to accomodate such numbers? I've often wondered why we couldn't have another Manhatten Project to solve such problems. Why such investments just to create bombs, ships or planes that
kill people? Damit Folks, we
must stop being the Policeman of the World on borrowed money. Bring the troops home. Spend what money we actually have on the United States. Start reducing the deficit as soon as fiscially possible. AND continue to throw the Bastards (sorry Ladies) out who only see problems from a political point of view. This is still the Strongest, Greatest Country in the World. We just have to work together for the good of all, not just the top 2 per cent.

Until there are meds/treatments that can markedly slow or stop the progression of Alzheimer's Disease (and other dementias), it seems to me there's not much benefit in early diagnosis.

My husband had AD, and I was his caregiver for 7+ years until died at home in November 2008. The neurological clinic he went to had a 85-90% success rate in diagnosing AD. They told me that AD actually begins 8-10 years before the diagnosis.

From what I've read, a sign you might have AD is forgetting how to do something you've been able to do for years. For example, although I didn't know it then, one of the early signs my husband was on the road to full-blown AD was the day he told me, "I can't do numbers in my head like I used to be able to." A friend of mine whose husband also had AD said an early sign for him was when he was no longer able to make sense of the TV remote.

A sure sign something was definitely wrong was the morning my husband could not find his underwear drawer. Then began a series of tests that led to the diagnosis about six months later.

I get the Alzheimer's Daily News e-newsletter. Researchers are not yet sure what causes AD, let alone how to slow, stop, or prevent it. So what's the point of knowing ahead of time you might get it? Seems like cart before the horse.

So, how to prepare? The best thing you can do NOW is to do is get your legal affairs in order (preferably handled by an Elder Law attorney) while your brain is still functioning normally. Because at this stage of treatments for AD, if you are diagnosed with it, you still will die of it. At about age 65, 1 in 10 people are diagnosed with it, so now is the time to prepare legally.

Health professionals advise what's good for the heart is good for the brain (we all know the drill by now). But of course you can do everything right and still get AD or whatever.

You cannot prepare emotionally for the possibility of getting AD; if you haven't cared for someone with it, and I mean cared for him or her every single day, 24 hours a day, you have no idea how devastating it is, in both tiny and large ways.

One day, as my husband lay on his bed, discouraged, I asked him what I could do for him. He answered, "Make me alive again." And then we cried together.

AD is a living death. No need to know ahead of time if you might get it, until, as I said above, there is a way to slow it, stop it, or, preferably of course, prevent it altogether.

What's needed now, more than early diagnosis, is learning what causes it. When that is known, treatments will follow.

Donate to the Alzheimer's Association if you can. Get your legal affairs in order and keep them in order. Think ahead about people you will be able to trust to take care of you and your affairs if you become disabled by AD (or whatever else).

Also keep in mind that if you get AD, at a certain point of disability, you will be eligible for hospice care. The "6-month rule" does not apply to people with AD.

Then enjoy each and every day you still have a healthy body and mind. And ... cross your fingers.

Before having a test to see how I'm doing on growing plaques, I'd like to know that the medical people have a real idea what Alzheimers is. That is, I'd need to do a lot of research in a rapidly changing field. In the lifetime of most people here, I hope they may have figured out what (or what all) causes various dementias and loss of mental capacities in aging -- but I don't think they are there yet.

I'm with Ronni; interested, but not an early adopter on this one.

A note of caution, please, for this discussion: without the new test, all clinical diagnoses of Alzheimer's disease are categorized as "possible" or "probable."

Although Alzheimer's is said to be the most common form of dementia, there are others with differing manifestations - although none are good for you, if I'm not being too flip.

As janinsanfran notes, this is a rapidly-changing field with new information coming along all the time. Let's be careful with the claims we post here.

P.S. The clinic that diagnosed my husband based its diagnostic success rate on clinical diagnosis PLUS brain autopsy.

We had a brain autopsy done on my Mom, too. Medication made a very significant difference in her functioning ability, from cognition and mood to her ability to swallow.

We did it at the suggestion of her neurologist. He told us, "Right now, we're treating everyone with dementia pretty much the same way. But by the time you are her age, we might have different treatments based on the diseases. If you find out what she has when she dies, it might help you, in time."

My sister & I knew that my mother would be willing to do *anything* for us, so we asked for the autopsy. Trying to keep track of where her body was over the weekend - I get chills remembering that.

Being 57 and still required to be in the work force for easily another 15 years, I would not chance announcing my candidacy for mental illness. Finding and keeping a job with the age stigma is hard enough. I would like to know, though, for the sake of those whom my care will eventually befall. In fact, I am just assuming I will get it eventually. I call it my personal enemy, do everything I can to strengthen myself against it and hope for the research findings for a cause.

I cared for my mother for two and a half years sleeping outside her door on a couch while she struggled with dementia early in the last decade. Her most terrifying moments were her lucid ones. Trapped and suffering. My experience was similar to SuzyR and I agree that taking care of legal business is the best preparation one can give to one's loved ones who will have to assist us should we find ourselves in this living death. I'm re-committing to doing just that after reading this post and comments.

People who have not had to give direct care really have no idea how devastating this disease is (and I would wish this task on no one). My children have no idea and I worry for their future with me.

I'd want to know. Like the others here, I would:

1) Get rid of even more stuff.
2) Get the best possible legal advice and preparation.
3) Relax and enjoy what's left.

These are all things, for that matter, that I ought to be doing anyway!

Today's issue of Alzheimer's Daily News has some articles that might be of interest to readers of today's TGB post.

http://alznews.org/Library/InfoManage/Guide.asp?FolderID=53

Cile, I'm with you.

It's like being told, "Okay, in 10 more years there's a speeding runaway freight train that will hit you when you drive across a certain set of tracks, only we can't tell you which tracks those are".

It would make you crazy every time you had to drive over train tracks.

No thanks. Unless that coupled with the diagnosis, there was a surefire cure, other than a Jim Jones Koolaid cocktail.

The only reason I would like to know would be to rule out AD so then treatment might possibly begin on other brain function diseases that might lead to improvement in function.

You raise some interesting points Ronni. I think, for now at least, that I would want to know. There is no alzheimers in my family but at 62 I am becoming very forgetful and wonder if it is the onset of this form of dementia.

Knowing if it was wouldn't bother me as much as not knowing and it claiming my memory completely before I could get my things in order. I would hate the end of my life dragging out and the physical discomfort that comes with it so knowing in advance would give me time to consider euthanasia.

There's a place in Switzerland called Dignitas that will assist individuals whose quality of life is one of enduring pain and death is a certainty from what has afflicted you. I think I would seriously consider this option rather than endure my final years with alzheimers or any other serious debilitating condition.

The complexities that surround this makes it a classic example why we need end-of-life counseling between our doctor and with the family present who will have to deal with our condition on some level.

Many, many important issues to discuss and continue working on. We all want answers and fixes. I keep remembering the Nun's Study in Louisville, KY which I believe is ongoing and has been for many years. These nuns will their brains to be autopsies after death whether or not they have signs of Alzheimer's. It was found that many, many had the plaques but also many of those who had clear autopsy signs of Alzheimer's had had no symptoms of the disease. Just discovering plaques is apparently NOT conclusive. This test can cause enormous anxiety along with possible reassurance.

I'm with the responders who find this development interesting but would not be first in line to be tested. At 74 I'm still working and functioning within a normal range (aside from forgetting where I put my car keys or coffee cup sometimes). Since there's no really effective treatment and no cure, why would I want yet one more thing to worry about? My husband (81 with no signs of AD) and I put our legal affairs in order many years ago, with updates as needed.

If I'm unfortunate enough to contract AD later in life, I'd opt for the Jim Jones Kool-Aid solution over 5-10 years of accelerating mental decline and eventual total loss of independence and dignity. Unfortunately, to utilize our state's Death with Dignity law, a person must have only 6 months to live, and lifespan can't be predicted with AD.

I don't think I want to know. I did, however, find the advice useful from those who were caregivers to loved ones with AD. And Cowtown Pattie's freight train analogy articulated my thoughts of the moment.

I would not want to know, unless I started to have serious, worrisome memory problems. Then, differential diagnosis of what kind of dementia it is has important consequences for treatment and other issues. My husband died of Lewy body dementia, the second most common kind and very poorly known. They are often misdiagnosed with Alzheimer's.

I would not want to know if I wasn't having any serious symptoms (I'm already having the name-retrieval problem, but hey). I imagine it is possible to have some of those plaques in your brain and NOT have any serious symptoms. If that's the case, why would you want to worry and depress yourself?

Dealing with mental illness is terrrible both from within and without. Some of us have already survived outrageous assaults on our person and our minds, from cancer, anxiety, depression, diabetes, et al.

Would we want to know that something even worse is inexorably coming, obliteration? I guess that depends on the strength of the psyche and the friends and family one might be lucky enough to have along on this uncharted journey. Courage, too!

Sounds like we're going to have a lot of company whatever we have to face--it would be comforting if we had a truly patient-centered approach to medicine.

Appreciate everyone's thoughtful thoughts!

Ronni, re your cautionary post:

I don't know enough about the subject to weigh in on Alzheimer's, but I do know dementia in general becomes more likely as one reaches old old age. We know AD has no cure, but is it in itself lethal? And how does it differ from other types of advanced dementia for the afflicted and their caregivers?

"Do You Remember Love" with Joanne Woodward and Richard Kiley is a powerful movie that can introduce people to AD in a dramatic way for anyone unfamiliar with Alzheimer's Disease.

There are stages of decline that may progress at different rates for each individual. For example, I recall a patient at a stage in which she had a high anxiety level with awareness something wasn't as it should be but didn't know what. She was still ambulatory, mostly remembered only through her visual sense. She ate her meals inconsistently.

I found this blog after doing a Google search for early alzheimer testing. My mother's father died 20 years ago of alzheimers, her mother is in a home due to dementia, and just last year my mother died from early onset alzheimers (my father had a brain autopsy done because they refused to diagnose it as alzheimers while she was alive). She was 63. I am 33 and I would get tested in a heartbeat. I watched my mother and father deal with this for years, and I did my best to help him care for her as long as he could. I want to know so I know what's coming, and so I can get any medication that might come along to help slow it down. I'm trying to live my life to the fullest in this moment, day to day, whether I have it or not. Anything can happen, I could be in a car crash tomorrow. I may not be able to control what happens, but I would like to know and be able to prepare for it. I don't like waiting and wondering.

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