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Hello, okay, okay so maybe it hasn't be exactly one month since I announced I was taking a month off from reacting to the shouts of researchers, funders, and those who are convinced they know something new about dementia and must share it with others.
There seems to be some under the table recognition now that the "types
of dementia" are not as mutually exclusive in their causes, progress, symptoms might have been originally suggested. In fact some now whisper if dementia is really something/something’s/a normal course for some to age. The press is on for early diagnosis before we know/agree on exactly what it is we are diagnosing. Can two types/forms of dementia have the same symptoms? progression? But who do I make the check out to? The National Alzheimer's Association or the National Vascular Association?
Well, who runs the most ads? Who is most effective at scaring us? Who is the comfortable old show having been around for twenty years? And what difference does it make who I make out the check to; it all goes to understanding dementia. Doesn't it?
Are we at a place where we can usefully focus of forms of dementia? Do we understanding what we don't understand?
Should we concentrate right now on individual forms of dementia or individuals living with the symptoms of dementia? The assumption is always we know what dementia is and is not? We don't. We know how different forms of clearly defined and mutually exclusive forms of dementia are formed, progress, and end up. We do not.
There is so much we don't know, and even more that we don't know we don't know. It is inappropriate, dangerous, stigma producing, false hope creating to claim something based on claims which are not yet proven.
This is where dementia research is right now. The language is corrupted, the claims are corrupted, and the science just isn't there. We know things, many things, and most of them we don't know what they mean. We just know they are there, we can now see them.
But what this means is far from settled science. Yet researchers have jumped over each other and ride on each other's backs so often they and we forget the gaps, the false hopes, and the lack of a consensus science foundation for many advanced claims. There is no order to how all this research is organized coordinated. We are now crowing because some researchers are talking to each other. Big deal, is that something worth crowing about? Shouldn't they have been doing this for twenty years?
Still time to pause, disinvite all those who have skin in the game of Alzheimer’s research (and make no mistake about the fact this is now very much a game, even though it is a game of life for those living with the symptoms of dementia). Someone somewhere has to start sorting through all this hope/hype for us and with us. Will it/should it be researchers, governments, and funding sources.
This should be one of the primary responsibilities of Nation's Alzheimer's Associations, but alas they are so busy promoting their own agendas, their own research theories, their own claims to be the best in the world, - the search for truth, for science, for understanding is left in the very hands of those wearing the thickest blinders - researchers who are perpetually chasing research dollars.
The quest is defined and driven by money, not results, not growing consensus. Most all results are advanced as legitimate news of value to those living with dementia.
Artificial cure deadlines are set, and then ignored. They are set without a factual basis for the claim, without a plan, without a budget, without consensus.
For most players in the game there will always be more time to straighten this all out, the only folks with less time are those living with the symptoms of dementia. They have been waiting for years and years, for decades and decades. They have been swallowing false hope pills, press releases, conference reports for years and years and years. This is bad, bad, bad for us all. It is especially unjust, unethical, for those living with the symptoms and those living with someone living with the symptoms. They should be the first to be served. They should be the first to be consulted/involved.
Sitting by the phone, waiting for Harry to call/consult/invest in/rely on/learn from/actually trust people living with the symptoms of dementia...Richard and more than five million other citizens.
Hello, there was a saying in WW II (I've been told) that claimed "Loose lips sink ships." I have just read several news releases and watch a couple of NIH videos updating the progress of the national plan, you remember the plan to "cure" Alzheimer’s by 2025. The current official wording of the claim now seems to be to "cure, control or reverse Alzheimer's by 2025." More words about words. We still don't really know what Alzheimer's is and is not, what does and does not cause it, when it starts or how it starts, how it progresses in any one person, and the questions remain endless with no answers in sight. That of course doesn't stop many "experts" from ignoring the facts or lack thereof and pushing on to define exactly how we are going to win this war against the enemy no one has been able to scientifically identify in the last several hundred years.
That doesn't stop well intended citizens from walking and running after a cure with check books in hand. It doesn't stop law makers from doubling this or that amount of money in order to "win" a war against an undefined enemy. It doesn't stop hope from rising from the sea of empty words, promises, breakthroughs, promising results, etc. and flooding the hearts and minds of already drowning caregivers.
This is a human tragedy in oh so many ways, for oh so many people. And of course the primary recipients of all this theatrical nonsense are those in the audience living with dementia. Who see, hear and feel themselves and their needs ignored by their governments, physicians, professionals, and (admittedly indirectly) their own caregivers (who are investing their time, money and efforts in support cure efforts rather than supporting quality of life improvement efforts)....