On a conference call this afternoon, reporters were given a chance to ask questions about the draft report and press release (available from http://consensus.nih.gov/2010/alzmedia.htm) from the NIH’s State-of-the-Science Conference on Prevention of Alzheimer’s Disease and Cognitive Decline.
The main finding announced in the press release is:
“The panel determined that there is currently no evidence of even moderate scientific quality supporting the association of any modifiable factor—dietary supplement intake, use of prescription or non-prescription drugs, diet, exercise, and social engagement—with reduced risk of Alzheimer's disease. The evidence surrounding risk reduction for cognitive decline is similarly limited. Low-grade evidence shows weak associations between many lifestyle choices and reduced risk of Alzheimer's disease and cognitive decline.”
Prevention research is limited by lack of agreement on how to define both Alzheimer’s disease and cognitive decline, the release said.
The public discussion of the draft consensus statement from the NIH’s State-of-the-Science Conference on Prevention of Alzheimer’s Disease and Cognitive Decline was one of the more interesting and lively sessions of the conference. Although many commenters commended the panel for their enormous efforts, as with all things Alzheimer’s, there was a lot of disagreement. Here are some of the highlights:
The draft consensus statement is out and underscores the uncertainty behind the diagnosis of Alzheimer's and theories on prevention of Alzheimer's and,more generally, any cognitive decline. Some excerpts from the Conclusions portion of the draft statement:
There is an absence of highly reliable consensus-based diagnostic criteria for both cognitive decline and Alzheimer's disease, and the available criteria have not been uniformly applied
Firm conclusions cannot be drawn about the association of modifiable risk factors with cognitive decline or Alzheimer's disease
There is insufficient evidence to support the use of pharmaceutical agents or dietary supplements to prevent cognitive decline or Alzheimer's disease
Large scale population-based studies and RCTs are critically needed...
The level of uncertainty expressed seems appropriate to me. The level of complexity of definitions and risk factors makes me wonder how successful any scientific studies can be.
The panel is taking public comment this morning, then will issue a final statement at 2 pm eastern today.
I don’t have time to do justice to today’s presentations at the NIH State-of-the-Science Conference on Preventing Alzheimer’s Disease and Cognitive Decline, but here is a quick and dirty review of what I think were the highlights. I apologize for all the jargon!
Alzheimer’s: Syndrome or Pathology, Revisited
In yesterday’s presentations and discussions, some researchers noted that they use the term Alzheimer’s to refer to Alzheimer’s pathologies (plaques and tangles) but also to a set of symptoms which, at least in old age, is commonly caused by a number of pathologies. This can be confusing, at least to laypeople.
This came up again today, with Ron Petersen of the Mayo Clinic noting that not separating the syndrome from the underlying pathology caused trouble yesterday. In response to a question from a panel member about diagnosing people with biomarkers when there’s no good treatment and when there would be psychological and financial implications, Dr. Petersen said he endorsed this concern, especially with respect to the role of amyloid biomarkers. “All they tell us is about the presence or absence of cerebral amyloidosis, which may not equal Alzheimer’s disease,” he said. These tests are valuable to have as indices in the clinical picture, but it’s very different to say they mean someone has Alzheimer’s, he added.
I’ve been glued to my computer all day watching the webcast of the U.S. National Institutes of Health State-of-the-Science Conference on Preventing Alzheimer’s Disease and Cognitive Decline. A panel of experts has the unenviable job of listening to presentations today through Wednesday, then issuing a statement to advise the public and professionals on the following questions:
What factors are associated with the reduction of risk of Alzheimer's disease?
What factors are associated with the reduction of risk of cognitive decline in older adults?
What are the therapeutic and adverse effects of interventions to delay the onset of Alzheimer's disease? Are there differences in outcomes among identifiable subgroups?
What are the therapeutic and adverse effects of interventions to improve or maintain cognitive ability or function? Are there differences in outcomes among identifiable subgroups?
What are the relationships between the factors that affect Alzheimer's disease and the factors that affect cognitive decline?
If recommendations for interventions cannot be made currently, what studies need to be done that could provide the quality and strength of evidence necessary to make such recommendations to individuals?
I talked last week with Mark and Ellen Warner, the people behind The Alzheimer’s Store. Although they have a busy online store and send out more than 100,000 print catalogs each year, they have an intensely personal approach to their business.
They take great pride in making sure customers are buying products that really meet their needs. “You know the scene in Miracle on 34th Street where Kris Kringle sends shoppers to other stores if Macy’s doesn’t have exactly what they need? That’s how we operate,” Ellen says.
Sometimes that means not making a sale. That was the case when a person with symptoms of early stage dementia called The Alzheimer’s Store recently to order an inexpensive memory aid. After talking with the customer for 45 minutes, a staff member transferred the call to Ellen. Ellen spent 90 minutes talking with him, and Mark another hour. The Warners felt the customer’s memory loss was serious, and that he was endangering himself and others. Instead of selling a memory aid, they encouraged the would-be customer to seek diagnosis and assistance, and were able to refer him to nearby resources.
Danny George and Peter Whitehouse, authors of The Myth of Alzheimer's, are encouraged by recent trends towards a broader view of Alzheimer's. See Danny's comments and Peter's at their blog.
Last fall, I wrote about participating in Brain Test Britain, an online trial of brain fitness training. The trial was designed to test whether brain training improves general memory and thinking.
The Alzheimer's Society has released a new report based on interviews of 44 people with dementia. The report concludes that people with dementia can have a good quality of life, and highlights what factors are most important in determining that quality.
People who tend to eat certain foods and avoid others are less likely to develop Alzheimer’s, at least according to a study by Columbia University researchers.
Great press release from the Alzheimer's Association Florida Gulf Coast Chapter on partnering with The Tangled Neuron to distribute the Living with Memory Loss Patient Guide!
My friends with early stage memory loss are among my best personal advisors. They seem to have a way of getting to the heart of a matter, and understanding what’s important.
They might be able to give advice to a variety of people through the Elder Wisdom Circle (EWC), an online site where anyone can ask for personal or career advice, and get a free, private response via email. Requests for advice are assigned to the most appropriate volunteer or group of volunteers among a pool of 600 “elders,” age 60 to 105.
The work is done through the Elder Wisdom Circle’s online system, says founder Doug Meckelson. If you’re not confident you can navigate an online system, you may still be able to volunteer.
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