The Cuckoo's Nest: Time To Pay Attention

As I've mentioned before, many of the people here in the Cuckoo's Nest suffer from varying degrees and various kinds of dementia.  Ironically, five years ago I feared that I would be one of them.  Both my father and my older brother died of complications of this Alzheimer's, and, after testing, I showed some very, very early signs of continuing the family tradition.

I shouldn't have worried.  So far, I'm still in pretty good shape cognitively, although occasionally I can't remember a word when I'm speaking or writing.  At this point, I attribute that to having a full hard disc and accessing some data just takes longer than it used to.  My problems are primarily physical, due mainly to smoking for over 50 years.  I'm lucky.  I get to enjoy the here-and-now of whatever time I have left.

Some of my fellow residents and their families are not so lucky, and it's heartbreaking in all sorts of ways.  One of my favorites obviously was a brilliant man and on good days that brilliance shines through.  Unfortunately, however, those days are fewer with longer spaces between them.  And he knows that he's slipping deeper into the dementia.  That's hard on him and it's hard to watch.

I was heartened to see the Los Angeles Times editorial board address this issue on March 19, 2014:

A recent study in the journal Neurology estimated that the Centers for Disease Control and Prevention's figure on deaths attributable to Alzheimer's in 2010 — 83,494 in the U.S. — is a fraction of the true number, which it estimated at more than 500,000. Officials at the CDC admit that the agency's number is significantly low.

Just as alarming is this: A study by researchers at Rand Corp. and other institutions calculated that the direct cost of care for people with Alzheimer's and other dementia in 2010 was $109 billion. In comparison, healthcare costs for people with heart disease was $102 billion; for people with cancer, it was $77 billion. Yet cancer research will be allocated an estimated $5.4 billion this year in federal funds, and heart disease will get $1.2 billion — while research on Alzheimer's and other dementias comes in at only a fraction of that, at $666 million.

It's time to substantially increase that budget.   [Emphasis added]

Amen! to that.

Do me a favor and drop a note to your congress critters and the president requesting a sizeable increase in the allocation of funds for Alzheimer's research.  We can't afford not to.

Elder Belle's Blessing: Pat Summitt

(Photo by Patrice Carlton and published at National Geographic).

This edition of the Elder Belle's Blessing, an award given from time to time to someone who has enhanced the rights or well-being of elders, goes to Pat Summitt, who is stepping down as women's basketball coach at the University of Tennessee after 38 years.

Pat Summitt is stepping aside as Tennessee's women's basketball coach and taking the title of "head coach emeritus" with long-time assistant Holly Warlick being promoted to replace the sport's winningest coach.

Tennessee released a statement Wednesday announcing the move.

The 59-year-old Summitt will report to the athletic director and help the women's program she guided to eight national titles. ...

Her impact reaches beyond wins and losses. Every Lady Vol player who has completed her eligibility at Tennessee has graduated, and 74 former players, assistants, graduate assistants, team managers and directors of basketball operations are currently among the coaching ranks at every level of basketball. [Emphasis added]

Pat Summitt helped young women reach their potential both both on the court and in the classroom, starting at a time when women's collegiate sports just wasn't considered all that important, at least not important enough to justify scholarships which had up to that point been reserved for men only. She helped create winners and scholars, and did it with style and grace. Anyone who has ever watched her coach saw her dedication and her passion for the sport and for her team. It was written all over her face, especially when she had that icy stare reserved for blown calls by referees or sloppy play by one of her players.

But it isn't just her basketball record that won Coach Summitt this award, not by a long shot.

The move comes less than a year after her diagnosis with early onset dementia-Alzheimer's type.

"I've loved being the head coach at Tennessee for 38 years, but I recognize that the time has come to move into the future and to step into a new role," said Summitt.

"I want to help ensure the stability of the program going forward. I would like to emphasize that I fully intend to continue working as head coach emeritus, mentoring and teaching life skills to our players, and I will continue my active role as a spokesperson in the fight against Alzheimer's through the Pat Summitt Foundation Fund.

Summitt revealed her diagnosis on Aug. 23 after a few months of trying coming to terms with dementia, which had caused her problems with memory loss both on and off the court during the previous season. Alzheimer's is a brain disease that destroys cognitive abilities over time. ...

With the blessing of University of Tennessee, Knoxville Chancellor Jimmy Cheek, the Hall of Fame coach said she planned to continue coaching as long as possible and that she wanted to show the world that it was still possible to function, even in the face of dementia and Alzheimer's. ... [Emphasis added]

Her honesty and openness about the disease which struck her at a relatively young age and then her work to raise funds for and awareness about the disease shows what a true champion she is.

Coach Summitt, may whatever stands behinds this universe hold you and your family in a loving embrace and assist you in the challenges which lie ahead.

Things That Make You Go Really?

There was an interesting little article in yesterday's Sacramento Bee on some non-traditional treatments for Alzheimer's Disease.

...Two new scientific studies in the past couple of months have shown some benefit in helping brain functioning amid Alzheimer's: one on meditation, the other on rosemary oil aromatherapy.

My first response to that was to scratch my head in puzzlement. Could the authors of the article really be suggesting that "woo-woo" medicine might have a place in treating this disease, things that doctors should be considering? The answer is yes. Unfortunately, they didn't provide a link to either study or give much information about the two. Also, unfortunately, I didn't have time to hit the Google to track the two studies down, although I will hopefully be able to do so later today. If I find them, I'll post an update.

In any event, here's the brief conclusion on the use of meditation by Alzheimer's patients:

Early findings showed a surprising, substantial increase in cerebral blood flow in the patients' prefrontal, superior frontal and superior parietal cortices, and also better cognitive function in the group that performed regular meditation. [Emphasis added]

And here's the finding on rosemary oil aromatherapy:

Results indicate for the first time in human subjects that concentration of 1,8- cineole in the blood is related to an individual's cognitive performance – with higher concentrations resulting in improved performance. Both speed and accuracy were improved in the study in cognitive functioning. [Emphasis added]

Now, without knowing more than the article provided, and without further studies testing the hypotheses, I'm not about to rush out and take a meditation class and to purchase a rosemary oil aromatherapy machine. Still, the findings of these two studies are interesting and do deserve a further look-see.

As the article states in its conclusion, the brain is one complicated organ:

...The brain is a complex organism, with many complex mechanisms that lead to optimum functioning. Early trials show that aromatherapy and meditation improve blood supply and enhance cognitive skills. Ongoing data are showing us that we have much power to help treat Alzheimer's integratively, keeping in mind that environment, exercise, health, lifestyle, meditation, music and smells can be all be beneficial in improving brain function.

It's pretty hard to argue with that.

Elder Belle's Blessing: The Gold Coats

(Photo by Patrice Carlton and published by National Geographic.)

The winners for this edition of Elder Belle's Blessing, an award given from time to time to those who have enhanced the health and well-being of elders, are men who are in prison and who won the award because of the service and care they provide to other prisoners suffering from the various forms of dementia, including Alzheimer's Disease. I learned about these men from an article in the New York Times.

The setting for the story is the Men's Colony in San Luis Obispo, California. Both the stricken and the care-givers are long term prisoners due to the nature of their crimes and/or the stiffening of penalties through such law-and-order mandates as the "Third Strike" law.

Dementia in prison is an underreported but fast-growing phenomenon, one that many prisons are desperately unprepared to handle. It is an unforeseen consequence of get-tough-on-crime policies — long sentences that have created a large population of aging prisoners. About 10 percent of the 1.6 million inmates in America’s prisons are serving life sentences; another 11 percent are serving over 20 years.

And more older people are being sent to prison. In 2010, 9,560 people 55 and older were sentenced, more than twice as many as in 1995. In that same period, inmates 55 and older almost quadrupled, to nearly 125,000, a Human Rights Watch report found. ...

With many prisons already overcrowded and understaffed, inmates with dementia present an especially difficult challenge. They are expensive — medical costs for older inmates range from three to nine times as much as those for younger inmates. They must be protected from predatory prisoners. And because dementia makes them paranoid or confused, feelings exacerbated by the confines of prison, some attack staff members or other inmates, or unwittingly provoke fights by wandering into someone else’s cell. ...

Realizing that California, with nearly 13,000 inmates 55 and older, could not adequately care for demented prisoners, Dr. Hodel, when she was starting the Gold Coat program, asked the regional chapter of the Alzheimer’s Association to train inmates to help. The chapter’s area director, Sara Bartlett, worried that she and Arlene Stepputat, then the program director, would not be safe as “women in a man’s prison.” She doubted whether violent felons could provide sensitive care.

Both women were surprised that inmates seemed more receptive, with less-complicated emotional ties to the patients than many of the people they trained to care for relatives at home. “They were much easier to work with,” Ms. Stepputat said.

Heriberto G. Sanchez, chief psychologist of the California Men’s Colony, said prisoners “were appreciative that someone from the outside world thought they could do this.” One wrote in an evaluation, “Thank you for allowing me to feel human.”

The prison requires that Gold Coats have “a clean behavior record for about 5 to 10 years,” Dr. Steed said. So far, only one Gold Coat has been removed, because “he had problems” with dementia patients’ messy eating and other behaviors, Dr. Hodel said.

I urge you to read the entire article so that you can see just what the Gold Coats do for their charges, what they are subjected to from other inmates, and how they cope through it all.

In terms of disclosure, Alzheimer's is a big deal in my family. Both my father and my brother died from complications of that disease. I have been diagnosed with the earliest opening stages. So far, beyond staying physically active and making an effort to interact socially (I am a hermit by nature), I have not had a need for any extra care, but that is likely in the years to come.

Additionally, and perhaps just as important, I am a Christian, something which frequently drives my lefty friends crazy. I believe in redemption and I much prefer mercy to justice because I've lived long enough to know the difference. And I am committed to the words of that Jewish carpenter's son who reminded us that "Even as you have done to the least of these, my brethren, you have done unto me."

So, I think the Gold Coats, whatever their past, deserve this award and much more.

Elder Belle's Blessing: Barack Obama

(Photograph by Patrice Carlton and published at National Geographic.)

I do a lot of kvetching about President Obama, but it's only fair to acknowledge when he gets something right. He is the recipient of Elder Belle's Blessing, an award given to those who enhance the health and well-being of elders, for his commitment to additional federal funding for Alzheimer's research.

The Obama administration is increasing spending on Alzheimer's research — planning to surpass half a billion dollars next year — as part of a quest to find effective treatments for the brain-destroying disease by 2025.

In a two-part plan announced Tuesday, the National Institutes of Health immediately will devote an extra $50 million dementia research, on top of the $450 million a year it currently spends. The boost opens the possibility that at least one stalled study of a possible therapy might get to start soon.

Next week, President Barack Obama will ask Congress for $80 million in new money to spend for Alzheimer's research in 2013.

Alzheimer's disease and other forms of dementia are a scourge for a rapidly growing proportion of the population of this country. While we probably won't see any short term results, at least we will be preparing for the future.

And President Obama appears to be aware of the need for assistance now for elders currently diagnosed with these conditions and their families:

...More than 5 million people already have Alzheimer's or related dementias, a number that, barring a medical breakthrough, is expected to more than double by 2050 because of the aging population. By then, the medical and nursing home bills are projected to cost $1 trillion annually. ...

The move is part of the administration's development of the first National Alzheimer's Plan, to combine research toward better treatments — the goal is to have some by 2025 — along with steps to help overwhelmed families better cope today. In addition to the biomedical research, the administration said it will propose spending $26 million for other goals of the still-to-be-finalized plan, including caregiver support.

Bravo, Mr. President!

For more information on this disease, including assessment, diagnosis, and treatment, I recommend going to the Alzheimer Organization web site. It's a good place to get started, especially if you suspect that an elder in your family may be showing signs of Alzheimer's or other forms of dementia.

Things That Make You Go "Ouch!"

When I saw the headline crawl across the top of my screen I immediately clicked on it because it looked so wrong. Pat Robertson, one of the long time leaders of the Religious Reich and a former GOP candidate for president, told his followers that it's OK to divorce a spouse with Alzheimer's.

Religious broadcaster Pat Robertson told his "700 Club" viewers that divorcing a spouse with Alzheimer's is justifiable because the disease is "a kind of death."

During the portion of the show where the one-time Republican presidential candidate takes questions from viewers, Robertson was asked what advice a man should give to a friend who began seeing another woman after his wife started suffering from the incurable neurological disorder.

"I know it sounds cruel, but if he's going to do something, he should divorce her and start all over again, but make sure she has custodial care and somebody looking after her," Robertson said. ...

Terry Meeuwsen, Robertson's co-host, asked him about couples' marriage vows to take care of each other "for better or for worse" and "in sickness and in health."

"If you respect that vow, you say 'til death do us part,'" Robertson said during the Tuesday broadcast. "This is a kind of death."

My first response was one of outrage because it sounded so cold and unfeeling, like something Newt Gingrich would do and say when a sick spouse became inconvenient. No, Pat, people with Alzheimer's, at whatever stage, are not walking, breathing corpses, suitable for throwing away.

Now, as most of you know, I have a horse in this race. My father and brother both died of complications from this horrible disease and I have been diagnosed with the early markers. My mother was the primary care-giver for both my dad and brother. She told me that it broke her heart when she went to see my father on their sixtieth wedding anniversary and he didn't have a clue as to who she was and what she was doing there at his bedside. Yet that didn't stop her from going to see him every day when she could no longer care for him at home and I don't think she ever considered divorcing him so she could start over even after she secured his care. That was simply out of the question. He was her husband and she loved him.

As conservative a Christian as my mother was, she would have been both appalled and outraged by Rev. Robertson's suggestion, even as I was upon reading this short blurb. But the issue isn't really all that easy once the sexist and faux "ethics" employed by Mr. Robertson's clearly hypocritical answer are stripped away.

My mother was in many respects one of the lucky victims. My father had a good pension, one that guaranteed a good health insurance policy to supplement Medicare. Their mortgage had long been paid off before he required custodial care. She could afford to get him the care he needed around the clock. Most families, especially these days, aren't so fortunate. The economic cost of this disease, like most catastrophic illnesses, is horrendous. I can easily imagine a scenario in which divorcing the Alzheimer's patient might be necessary for the surviving spouse to ensure both decent medical care via Medicaid for the patient and to avoid total economic collapse for the family.

This country's health care system, even under the new-and-improved plan of Obama care, doesn't even come close to dealing with issues like these. It could, of course, but it doesn't. And that's to our shame and the shame of our owners.

And it doesn't excuse Rev. Robertson's tone-deaf, cold, and hypocritical stance. I hope I'm around when he tries to explain that clunker to St. Peter. In the meantime, I'm going to go wash the bitter tears from my face so that I can start the day without taking hostages.

Another Mile Post

The first wave of Boomers are hitting the magical age of 65 this year. While most won't be able to collect regular Social Security yet, all will qualify for Medicare. While that may take some pressure off personal finances, it will transfer that pressure to the federal program. We all know that as one ages, one's medical expenses increases and Medicare bears the brunt of that increase. Some attempts to rein in those costs have been implemented in the 2010 healthcare law, but the federal government would do well to look at other ways to contain the costs of getting old.

One of the scourges of old age is Alzheimer's Disease. We still have a long way to go in untangling the causes of the disease, and perhaps an even longer way to go in finding a cure. However, we are making some positive steps in both directions. The Los Angeles Times editorial board took note of one such step.

...there was some heartening news this week: An advisory committee to the FDA unanimously approved the use of a chemical dye that highlights, on imaging scans, the plaque in the brain that is the telltale sign of encroaching Alzheimer's.

This may not seem like really good news. A test reveals that you'll get a disease that steals your memory and, ultimately, leaves you dysfunctional, and there's little you can do except maybe set aside some money for future caregivers. Not to mention the ethical problems: Could you lose your job if the test results become known? Or your health insurance?

Frankly, I'm of the opinion that knowing is always better than not knowing, especially when it comes to health conditions. Maybe setting aside money for future caregivers seems thin soup to the editorial board, but to those with this horrid disease it's an important first step. Other decisions can be made now, while faculties are still unimpaired, when those decisions can make a huge difference, especially to family members.

As to the ethical considerations that flow from the diagnosis, especially with respect to health insurance and jobs, there are now laws on the books which provide some protection against such forms of discrimination, even if they could stand a little tweaking.

But the editorial makes an important point regarding what we as a nation must do:

According to statistics from the National Institutes of Health, estimated funding for Alzheimer's in fiscal year 2011 is $480 million. For cancer, it's more than $6 billion. Only a small percentage of worthy Alzheimer's research projects receive NIH funding. That should change.

Why, yes. Yes it should. That will happen only if we demand it, and do so very loudly. I'm grateful that the Los Angeles Times started the ball rolling in that regard.

Damned grateful.

Dollars And Sense

It's always good news when a state decides to take a positive step towards solving a problem before things get totally out of hand. Minnesota has just taken such a positive step with respect to the devastating costs of Alzheimer's.

The number of Minnesotans with Alzheimer’s disease and other forms of dementia will swell from 88,000 now to 198,000 in the next 30 years, with the prospect that state coffers, families and employers could be overwhelmed by the stress and costs of care, according to a report that will be delivered to the Legislature on Thursday. ...

With average annual medical costs for an Alzheimer’s patient running about $33,000 — triple that of similar people without dementia — cutting expenses even by $5,000 per patient could save $44 million a year.

The report (which can be found here) combines common sense and innovation in its proposals to cut the financial and personal burdens of living with Alzheimer's.

The report’s first proposal: Train and encourage doctors to detect Alzheimer’s disease early — something often resisted both by doctors and families — which could save the state an average of $10,000 per patient a year.

“There is no cure, but with early detection, treatment can slow the decline by 12 to 18 months for more than half of patients,” said Michelle Barclay , a vice president at the state Alzheimer’s Association, which helped staff the 20-member group appointed by the Legislature in 2009. The group met for 15 months and involved about 100 others to develop the report. ...

Other recommendations include: Require cognitive screening for all Minnesotans 65 and older in state-paid health programs; create a “dementia clearinghouse website” with information for families and professionals; adopt a state “gold standard” for dementia care, and reinstate a geriatrics medical education program at the University of Minnesota.

No, the report doesn't have the sex appeal of the announcement of a medical breakthrough in treatment or cure, but we all know that such a breakthrough is still far down the road. The report does provide, however, some practical suggestions which will bring not only cost savings to the state but also relief to the family care givers who are too often exhausted and ground down by the burdens of Alzheimer's in a loved one.

This is an important first step, and the Minnesota state legislature will hopefully implement the suggested proposals now, before the costs are insurmountable. Other states and the federal government would also do well to study the report and to initiate some of the proposals for the same reasons.

A New Approach

What if beta-amyloid plaquing isn't the cause of Alzheimer's disease, but merely an accompanying risk factor? If that's the case, then current research on this disease needs to be refocused, according to Karl Herrup, chairman of the department of cell biology and neuroscience at Rutgers University. He has offered an alternative theory, one that really needs to be explored.

From the Los Angeles Times:

He suggests three steps are involved in the development of Alzheimer's disease. First, there is some type of vascular brain injury. This can be a type of physical head trauma that occurred earlier in life, small strokes that occur in old age or other types of vascular injury. Second, the brain responds to this injury with inflammation. However, the normal inflammatory response doesn't shut itself off and becomes chronic and destructive. Finally, the cells of the brain are permanently altered and cannot return to a normal function.

If Herrup's theory is accurate, then prevention and treatment models will change accordingly. Maintaining cardiovascular health becomes significantly more important. Head injuries, however minor, will have to be monitored longer to check on the inflammatory process. And treatment for Alzheimer's will take a slightly different direction:

The hypothesis points to other avenues of research, he said, such as using anti-inflammatory drugs early in the disease process or targeting therapies that would act on the physiological changes in brain cells that occur after long-term inflammation.

Interesting hypothesis. Hopefully it will be tested thoroughly. Even if the theory doesn't pass muster, however, it should lead to some mighty important knowledge about this devastating disease.

A Horrible Decision

OK, I've calmed down a little. Last night I got the news that stem cell research has once again been kicked in the gut, this time by a federal judge, and I went off like a bottle rocket. I'm still angry, but at least I am calm enough to consider just what this latest bad news means in language acceptable to civil discourse. Well, mostly.

From the Los Angeles Times:

A U.S. district judge on Monday blocked the federal government from funding all research involving human embryonic stem cells on the grounds that it violates a 1996 law intended to prevent the destruction of of human embryos.

The ruling came in the form of a preliminary injunction in a case involving two scientists who challenged the Obama administration's stem cell funding policy, which was designed to expand federal support for the controversial research. ...

The Obama rules allowed the use of stem cell lines derived from frozen embryos no longer needed for fertility treatments that were donated according to strict ethical guidelines. The rules did not allow the National Institutes of Health to pay for the creation of the stem cells themselves — a process involving the dismantling of days-old human embryos that is clearly forbidden by a federal law known as the Dickey-Wicker Amendment.

The scientists who challenged the guidelines argued that Dickey-Wicker also forbids the use of federal funds for any subsequent research on those stem cells, even if the embryos they came from had been destroyed years before.

The ruling essentially put embryonic stem cell research back to where it was under George W. Bush, that is, essentially at a standstill. We lost eight years of research into the treatment of such conditions as diabetes, spinal cord injuries, Parkinson's Disease, and something which affects me personally, Alzheimer's Disease. That delay effectively shuts people of my age out of any benefits from the research, but those in the next generation would certainly have benefited from further research that would be allowable under Barack Obama's plan.

But a federal district court judge ruled that federal funding of such research runs afoul of the Dickey-Wicker Amendment passed by Congress in 1996 as a bone to the Religious Reich. The judge had to use some really specious reasoning to get to that point:

UCLA law professor Russell Korobkin, an expert on stem cell legal issues, said the ruling was "a terrible decision."

By considering all research part of an unbreakable continuum, the decision implies that the Dickey-Wicker Amendment has no limits, which is an unconvincing interpretation, Korobkin said. "It suggests that by conducting research on an acorn a scientist would also be conducting research on an oak tree, because acorns come from oak trees," he said.

The NIH has maintained since 1999 that the Dickey-Wicker Amendment precludes only the derivation of human embryonic stem cells, not their use as an experimental tool. The fact that Congress has not fine-tuned the law since then to explicitly ban funding for the research is evidence that the NIH is correct, Korobkin said.

Well, duh!

Apparently either the government lawyers didn't come up with that argument or didn't present it forcefully enough to Judge Royce C. Lamberth to persuade him to consider the effect of such an injunction on the lives of thousands of people who will now suffer and die as a long term result of his decision.

But here's the real kicker, the plaintiffs in the case have an interest in the outcome which apparently outweighs the interests of those thousands of people:

The case originally included the Christian Medical Assn., an embryo adoption agency called Nightlight Christian Adoptions and other plaintiffs, but courts removed them from the case.

An appeals court allowed the two researchers to proceed on the grounds that the expansion of NIH funding for human embryonic stem cells made it more difficult for them to win grants for their work on other types of stem cells derived from adult tissues. [Emphasis added]

The two researchers' livelihoods were at stake, and their fame as scientists. Hell, they might even lose out on a Nobel Prize or two if they had to compete with those researchers working on embryonic stem cells.

And so, we are back to square one.

Please allow me one lapse in good taste.

Fucking douche bags.

Patience

Last week I posted on a new proposal for the diagnosis of Alzheimer's disease, one that will allow doctors to make that diagnosis earlier so that treatment can begin earlier. Later in the week, the New York Times reported what I consider to be equally important news with respect to that earlier treatment.

The article, while lengthy, is an excellent one. It details the history of the discovery of the disease and the ongoing research into its source and progressive nature. For that alone, the article deserves a close reading. However, it also provides an important view on the caution which the Food and Drug Administration is exercising with respect to current and future clinical trials being run by pharmaceutical companies with new drugs that are designed to combat the disease by slowing and eliminating the development of the amyloid plaque in the brain.

The reason for that caution is a good one: about 90% of researchers believe that the plaque tangles are not just a symptom of the disease but are rather the source for the destruction of brain cells leading to the loss of memory and the later horrific ravages of the disease which lead to death. That's the current scientific model for the disease, but it's not one which is universally accepted. What happens if it's wrong? What happens if the drugs currently being developed do in fact remove the amyloid plaque, but the disease is not affected? What happens if the drug's side effects are, in the long run, just as bad as the disease itself?

Dr. Russell Katz, director of the F.D.A.’s division of neurology products, is in a quandary about Alzheimer’s drugs. What, he must decide, should be the criteria for showing that a drug works?

Should the F.D.A. say it is sufficient to show that a treatment prevents or lessens the formation of plaque?

The agency is not ready to do that, Dr. Katz said.

“You only care if down the road the patient gets better,” Dr. Katz said. “What we are concerned about is approving a drug based on a lab test and being wrong about what happens to the patient clinically.”

With Alzheimer’s, Dr. Katz said, “the great fear is that maybe amyloid has nothing to do with the disease.” If that were the case, and the agency approved a drug that blocked amyloid formation, millions of healthy people could end up taking something useless or even dangerous. And because it takes so long for Alzheimer’s to develop, it could be decades, if ever, before anyone knew the drug did not work.

While nothing would make me happier than to have a new drug available in the next five years to fight Alzheimer's, a disease that has ravaged my family, I think Dr. Katz's caution is laudable. It doesn't mean that the drug makers should back off; what it does mean is that they will have to use the same caution and to exercise a little patience. And that's why the change in the diagnosis protocols for Alzheimer's was such a big deal. Researchers will be able to start the clinical trials earlier, giving the drugs a chance to prove their efficacy in removing the amyloid and in changing the course of the disease.

Patience is not my long suit, but I'm beginning to learn its importance.

Another Step Down The Road

As cautiously as this NY Times article is phrased, I still got excited at the news that scientists and clinicians are considering changes in the way Alzheimer's is diagnosed. Technically speaking, up to this point the only time a formal diagnosis of the disease can be made is after death when an autopsy shows the tangled web in the brain known as plaque. That's not much help for the victims, and it certainly isn't much help for the researchers looking for ways to halt the progress of the disease. Now, thanks to advances in the ways we can look at the brain, the disease can be tracked far earlier, modifying ways we can actually treat the disease, and, hopefully someday, ameliorate the symptoms.

The current formal criteria for diagnosing Alzheimer’s require steadily progressing dementia — memory loss and an inability to carry out day-to-day activities, like dressing or bathing — along with a pathologist’s report of plaque and another abnormality, known as tangles, in the brain after death.

But researchers are now convinced that the disease is present a decade or more before dementia.

“Our thinking has changed dramatically,” said Dr. Paul Aisen, an Alzheimer’s researcher at the University of California, San Diego, and a member of one of the groups formulating the new guidelines. “We now view dementia as a late stage in the process.” ...

“Over all, I think this is a giant step in the right direction,” said Dr. P. Murali Doraiswamy, a psychiatry professor and Alzheimer’s disease researcher at Duke University who was not involved with making the guidelines. “It moves us closer to the cause of the disease rather than just looking at symptoms.” [Emphasis added]

Of course, one of the problems with the proposed changes under consideration is the expensive testing that will be required. The various types of brain scans which will be used are costly, but, then, so is the management of the disease in its end stages. Tracking the development of the disease at the early stages will enable researchers a more complete picture of just what is going on in the patient's brain, which should lead to more effective and earlier intervention.

Just as important, however, is that an earlier diagnosis gives the patient and the family of the patient an opportunity to make the plans necessary to cope with the progress of the disease as it takes its toll. Knowing, I have discovered, is much better than not knowing.

All things considered, I think this is good news.