The more I read about research into the causes and treatments of dementia, the more concerned I am that the frenzy around creating “a world without Alzheimer’s” and the magnitude of funds directed at this goal are causing a lot of scientists to forget their basic rules of science.
Here is a case in point: recently, WedMD’s Medscape online newsletter sent out a bulletin with the headline, “Are Fewer People Developing Dementia?” The article quoted recent data from the Rotterdam study showing an overall 25% decline in the incidence of new cases diagnosed between 2000-2005, compared with a similar study conducted from 1990-1995. The article quoted the study team as saying, “Although the differences were nonsignificant, our study suggests that dementia incidence has decreased….” The team suggested that much of this decline might be due to improvements in cardiovascular health.
Now, I happen to believe that much dementia, including that which we call Alzheimer’s, is at least partly connected to cardiovascular health; therefore I am quite optimistic that improvements in this area may indeed be leading to a lower incidence of dementia. The problem is that the results were nonsignificant; scientifically, this means that the study did not prove a thing!
The finding of larger brain volumes in the newer cohort lends support to their theory, but the primary outcome did not reach statistical significance. This means that the “25% decline” is unproven, and yet it is trumpeted in a media report filled with speculation by the research community.
This thought process echoes the rather sketchy data that has been accepted as gospel by much of the health care profession over the years. For example, in spite of the volumes of data showing little benefit and much potential for harm from antipsychotics, most physicians believe them to be helpful in many people living with dementia, and the 2011 Agency for Healthcare Research and Quality statement reports “high strength of evidence” of benefit in “behavioral symptoms of dementia.”
Similar claims of overreaching conclusions have been made about the benefits of cholinesterase inhibitor drugs, such as donepazil. And recent accusations of researchers (including a claim that the data on the benefits of long-acting donepazil were exaggerated, and a “whistleblower” suit claiming inaccurate data reporting in a 2000 Massachusetts brain volume study), suggest that there is at the least a lot of “groupthink” going on, and perhaps even worse in some cases.
Another example of groupthink is the rush toward treatment of amyloid, with little or no discussion of studies (like the nun study) that have shown the presence of large amounts of amyloid in cognitively normal individuals as well.
The media feeds the frenzy by highlighting every study with even a whiff of possibility as the next breakthrough. And the researchers certainly pick up on this and use the media hype to get their names out there in the public eye.
It is time to get real–both in setting the goals of research and in the way we conduct and report these studies. Irresponsible reporting does not help our cause and actually harms our efforts to improve the lives of people with dementia.
Hello, as usual you are much like Peter Whitehouse and Danny George – voices of reason, collectors of evidence, supporters first and always of people living with the symptoms of dementia. The leaders ( The National Alzheimer’s Association, Alzheimer’s Disease International, The Mayo Clinic, and so on are rationalizers of drug failures – not voice of reason, collectors of each other’s opinions, not builders of consesus Science, and they all share the same twisted belief that bench research is the best way to server the needs, to improve the quality of people living with dementia and those who love and care for them. The direct and indirect conflicts of interest of this mutual admiration society are simply ignored. Want to be on a board? Got money, wanna sponsor cure research – ignore how you got/get the money, just donate it. Want to claim you represent all the stakeholders in the public health crisis caused by dementia, ignore all forms of dementia except Alzheimers, pretend their is only one form of it, and join the club. Unfortunately your own fame, fortune, job, respect, lab, professional future are all tied to to this one-eyed approach to dealing with dementia – cure alzheimer’s by doing something to or with amaloyd and/or tau.
It would be farcical were it not for the millions of people living with the disabilities the grow out of dementia. It would be a broad British slap stick comedy were not for the fact that millions are diagnosed and millions die while back slapping, exaggerated press releases, rationalizations of failures continue between the club members.
It’s immoral, it’s wrong to continue this absurd way of dealing with a world pandemic. Who will lead us out of this mess? Who will say the emporers are not only naked they are Mad (doing the same things over and over again and expecting different results).
We nibble at their feet. We complain to each other. We point out this and that to them.
We are ignored. We are served with occasional lip service, but certainly not with budget dollars.
Yes the media doesn’t perform its duty. Yes it makes bad things worse. Yes it is just as guilty of perpetuating false hope as is the National Alzheimer’s Association and their gang of research friends. Yes we are consistently ignored by political parties, and politicians.
Yes it is time for more of us/all of us to stand up and speak out about this awful state of affairs.
Richard
Thank you for this enlightening post. Your important statement with regard to the abandonment of sound science is one that the political decision makers need to be aware of. I encourage people who want to understand more about your comments to read your inspiring book Dementia Beyond Drugs, also the Myth of Alzheimer’s by Peter Whitehouse and Danny George which changes the traditional thinking about Alzheimer’s and what needs to be done for those who live with the diagnosis. I invite your readers to visit our website http://www.dementiacareaustralia.com to find out about Spark of Life, which I know you Al, Richard Taylor and other like minds put your wholehearted support behind because of its positive and practical impact on the lives of people with dementia in the here and now. Spark of Life is a pioneering approach supported by new biology and quantum physics that enables profound positive changes in the lives of people with dementia. Please feel welcome to contact us, join our forum, receive our free newsletter and be part of a positive conversation and future for people with dementia
I’m optimistic that progress will be made but still cautious.
Kelly
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Yes there is a cure Alzheimer and scientists are aware of it,as a matter of fact one of the leading researchers admitted he now takes it himself. Just a simple herb mixture that has eradicated the protein webs that are believed to cause it. Given to white mice and rats over period of five weeks, traces of protein gone,and memory tests on subject animals confirmed . These herbs have no known side effects. Question is,why do we not know. I think the answer is obvious. Danny
I have heard similar stories of suppressed treatments, but have not seen any printed reports. Even if the scientific community were suppressing such a treatment, I would think someone in the media would dig into this and report on it.
At present there has been no drug or herb scientifically proven to arrest or reverse the course of dementia. I’m skeptical that any substance provides a cure, as I think it’s all too complex a process and too integrated with degeneration of neural tissue for a simple solution.
I am also not convinced that making the protein go away will reverse the process. It may slow the effects of the condition, but I think the protein is more likely an effect of the process rather than the cause (think of elevated blood sugar in diabetes – it can cause damage, and lowering it can prevent complications, but it doesn’t cure the diabetes.)
Yes I understand what you mean,but if you take into account the length of time webs take to developed then perhaps this can negate worries. From my understanding the tests proved that after infection and tests for memory loss,then treatment with the herbs for five weeks, memory had reverted to its original state. Also, these herbs have been used for hundreds of years to treat age related diseases, as well as many common ailments, One of these inflammation (now being researched for Alzheimer). Given the devastation this malady causes the results mentioned and the silence ensuing we have to wonder. I heard about these herbs from the scientist mentioned hence writing to you. I must thank you for allowing me this opportunity to voice my thoughts and hopes.
While I understand the intent of your post I respectfully disagree with some of the comments made. I don’t believe it is negative to hope for “a world without Alzheimer’s” and to create an awareness in the public about this vision. Would it really be better for “the leaders” to abandon this hope and turn their attention toward another disease? As someone who has worked for the Alzheimer’s Association for the last 13 years I have not spent one day doing research. My co-workers and I have spent years working with people who have just been diagnosed and want to know how to live a better life. We have spent years connecting families with one another so they know they are not alone. We have spent years trying to help healthcare professionals understand person-centered approaches. And yes, we have spent years devoting our lives to the hope that one day this disease does not cause the devastation that we see everyday. I know the Alzheimer’s Association spends millions on research, but I know for a fact we spend millions more on advocating for a good life for people with Alzheimer’s and those who love them.
Your comments are certainly well-taken, Amelia. To clarify, I am not against drug research and do believe we will come out with better treatments than we have, (though I believe this should be the focus rather than and out-and-out cure, which I think is very problematic with dementia–even “Alzheimer’s”– being such a heterogenous condition). I also feel that more of the available funds should be directed toward care – not only the fine work you and other chapters do, but also educating professional and family care partners.
But the main point I was trying to make is that much of the research that is done is poorly reported and over-hyped, and I believe this is not only the fault of the media, but that the researchers are often partly to blame as well. The result, in my opinion, is often false hope, which can be as bad as no hope at all.
Dear Dr Power: I’m the editor of the Australian Journal of Dementia Care, a magazine based out of the University of Wollongong, and I was wondering if you’d be interested in having this article republished in the journal. If so, please drop me a line by email, and we can have a chat about it – I thought this was fantastic!
Cheers,
James.
Thanks so much James. Email sent to you today.