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September 05, 2006

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Gail Rae Hudson

First, I want you to know something I always think when I'm reading your posts: I not only admire your tenaciousness in seeking out point people and interviewing them from an educated layman's perspective, I'm grateful for it, Mona. Thank you!
I find it curious that only 35% of the subjects who scored high for dementia risk developed dementia. I'm not well schooled on statistics so I have to assume that 35% is statistically significant. It certainly sounds so. But, turn this around and it means that 65% with "the worst risk score" didn't develop dementia. That seems even more statistically significant, to me.
And, I can tell you, having known people who lived in Finland, that the population is not just "fairly homogenous" but extremely homogenous; possibly one of the most homogenous populations in the world.
As well, it's hard for me to go along with Dr. Ngandu's final answer. In fact, from my point of view, the study tells us nothing that would allay the fears of those who wonder if they are at risk for dementia, and certainly doesn't indicate much in the way of prevention. Spin, spin, spin. Whoa!
Anyway, what I really appreciate about this is your doggedness in asking questions, your personalization of the questions and your ability to step out of the way and let what Dr. Ngandu said speak (or, rather, refuse to speak) for itself.

Mona Johnson

Thanks for the compliment, Gail!

From an individual perspective, I think you're right - it's encouraging that 65% of those people with the worst risk scores didn't develop dementia. I think the keys here are:

1. this risk score is evolving, and this was the first version
2. 35% is a higher rate for developing dementia in 20 years than you would expect (in the general population), so this indicates Dr. Ngandu and colleagues are on the right track.

Also, several points in Dr. Ngandu's defense:

1. "fairly homogenous" was the wording in my question, which is probably why she answered using that phrase.
2. I don't feel that she refused to speak for herself - I'm more grateful that she took the time to answer my questions about her research. I do think it's probably true that if the overall population's cardiovascular health were improved, dementia rates would go down.
3. I think that journalists, rather than researchers, are more often responsible for "spin" - maybe because readers and viewers don't have much patience with complex issues and even more complex answers. You know all too well that anything to do with dementia is intrinsically complex, so both journalists and researchers are stuck with a disconnect between the information they want to present and the audience that needs the information - at least that's my perspective.

My biggest worry with this kind of information, or the Alzheimer's Association's "Maintain Your Brain" campaign is that we'll blame dementia patients for their illnesses. Many smart, active, healthy people develop dementia, and there's nothing obvious they could have done to prevent it.

I'll be interested to see how this risk score evolves over time.

Gail Rae Hudson

Very good points, Mona. I'm also curious to see how the risk score evolves over time.
Something I thought of after commenting: I notice that diabetes was mentioned as a risk factor that has "quite a lot of evidence behind [it]". What I find interesting is that of all the people I know very or fairly well (there are several others of which I know almost nothing) through caregivers who are elderly and displaying dementia (including but not exclusive to those online), which would be 11:
2 are diabetic, diagnosed in old age (which I believe makes a difference) (one is my mother, one is the mother of a friend here in Prescott).
1 (Bailey's Mom), I'm not sure of regarding diabetic status.
8 are not (at this time) (or were not) diabetic.
Of the two who are definitely diabetic, both experience a much milder type of dementia than all but one of the 8 who are definitely not diabetic and milder than the one of whom I'm not sure.
One of the non-diabetics (who is now dead, not your father), displayed an even milder form of dementia than the two who are diabetic.
Also, a cousin of my mother's was a Type 1 diabetic since early childhood (I am not including him in the group above). He died a few years ago of complications of his diabetes. He was in his early 90's (I know...amazing, huh; he was only disabled by his diabetes for the last year of his life). He never experienced dementia.
So, there's room for maneuvering even when considering diabetes as a "quite [evidential]" risk factor.
I hope you enter this in a parade, Mona. I'd love to see what sort of comments you get from the medical community!

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