I am Richard Taylor, still living with the symptoms and diagnosis of dementia, and this time I am writing from a worldwide conference on Non-Pharmacological Interventions and/or Treatments to support people such as myself living with the symptoms of this or that form of dementia.

The food here is as good as the people are friendly! The conference was organized through the sponsorship of the Queen of Spain!

Queen Sofiaof Spain

The prospects of socialceuticals becoming more used, more useful than pharmaceuticals, seem good, at least among the experts attending this conference.

While response to my initial Journal of the Voices of Dementia was overwhelmingly positive, response from individuals living with the symptoms and diagnosis has been modest to say the least. I simply do not have enough “copy” now to put out this month’s journal. I do not want the journal to be an extension of my words and thoughts; I want it to reflect perspectives in addition to, and other than mine. Thus I will continue to send out monthly issues of this newsletter until I

Main Post officeMadrid

find (or they find me) more writers for the Journal. While I know my own writings, speeches, DVDs have inspired/impacted many many folks all around the world I have not served as a convincing enough role model for others living with dementia to stand up and speak out on the platforms I have used and/or built. One Richard Taylor is enough for me, and I suspect many other people too! I am now satisfied with affecting folks one at a time. I have given up trying to change institutions, organizations and governments. Unfortunately, I cannot point to thousands of other folks living with dementia who have been successful in those larger arenas. I do not mean to imply others are not standing up and speaking out, what I am saying is, apparently for

Soccer Stadium Madrid

whatever reason few are willing to write/publish in this Journal. I realize this is not necessarily the best and certainly not the only way to stand up and speak out.  But for now, it is one of the few channels of communication which is self limiting in that it only prints articles authored by folks from around the world who are actually living with the symptoms of dementia, and through which they can share their life experiences living with dementia with each other, and with carers and professionals around the world. Won’t you please consider sharing your day to day experiences with dementia with kindred spirits and those who want and need to know what it is like to live with this or that form of dementia? If so, write me -richardtaylorphd@gmail.com and we can figure out how to get you and your writings into this Journal.

Thanks

Richard

The Answers are “in the bag”

Will I “get” Alzheimer’s Disease/Dementia? How can I know before even my brain knows, or at least shows any signs of knowing? The answers claim the usual gang of suspects turns out to be in a bag of bodily fluids (mostly blood and spinal fluid), DNA, Genes, and stuff I spilled on myself while eating lunch just before I went in to the “create your own bag of bio markers” get-together.

Change comes and goes fast, very fast. For someone living with the symptoms of dementia the change I have experienced since my diagnosis about nine years ago would even spin the head of someone whose cognitive skills are not slipping. For me, since my skills are slipping and the change is literally overwhelming. Now comes the claim there is a bag of biomarkers that predicts Alzheimer’s (or is it dementia) with a 90% accuracy rate, and can predict it way, way before our brain is effected by the biology of dementia (if indeed there is such a freestanding biology). My personal believe is the biology of dementia is a part of the biology of an aging, a stressed out organ (my brain) which I am asking to keep me going longer than the evolution of the organ has evolved to support without showing some signs of slipping. My brain is being forced to hold and maintain a memory through a system that can best be characterized as amazing, uncoordinated, sometimes randomly organized, and certainly not integrated through and with the three forms of a brain I carry around with me between my ears.

Never mind no one claims to know why or how this happens, just be excited about the fact that some form or forms of dementia (if indeed dementia comes in forms) can be predicted before they overwhelm a brain’s ability to cover them up. Let us elevate, honor, and support this bag. Let’s base new treatments, drugs, and ways of dealing with dementia on the results of everyone’s bag of biomarkers. The fact we still don’t know what causes these symptoms, how to slow down the symptoms, and how to cure it should now be clearer to everyone, argues the bag’s promotion team of researchers, politicians, and people who claim the leadership in creating a world without Alzheimer’s.

Now at least we can identify subjects for their studies, 90% of whom will someday be living with slipping cognitive functions.

Ignore how costly, invasive, unavailable the tests to fill the bags are. Ignore the fact that the all the markers don’t appear in everyone’s bags. They just keep filling bags until they got to 90% predictability. And what was the gold standard upon which the 90% accuracy prediction rate was based? Contradictory conclusions between noted pathologists as to what they saw, and what it meant? Brains that displayed the biology of plaques and tangles, but some lives that had few if any symptoms.

Oh, and I thought this was going to be so easy to understand. After all, aren’t we going to base new treatments and drugs on this bag? Won’t it finally pull and point researcher in directions around which a consensus can be or is forming? For now at least, this is a bag “full of sound and fury, yet signifying noting,” or at least very little other than more hopes, wishes, dreams, and what ifs.

Then why is everyone making such a big deal about the bag and what is inside it? We are now being reconditioned by the well intended (most of them, some of the time) dark forces of the keepers of the myths and stigmas of the label Alzheimer’s disease. Now they not too subtly turn our attention, our language, our way of talking about and thinking about dementia away from dementia and to the exclusive use of the label Alzheimer’s disease, to refer to the public health crisis that has already begun with the initial 65th birthday parties of the baby boomer generation.

This label, they promise can be, erased, it can be cured, and now they claim/hope/promise/suggest it can be accurately pre-applied to folks exhibiting no symptoms of dementia. This label can be slowed down. Yes, they now hint/suggest/hope/wonder aloud that would not it be wonderful if it could/can be pre-identified before it even applies in any way anyone can currently explain. After all if we could wish this to be true, would not it be easier to wish that once this was true than we would be closer to our wish> for treatments, pills, and better lives to be just around the corner for folks who really are living with the symptoms of dementia. Just trust this bag of biomarkers, they tell us. Let’s not rush to accept this bag, they tell us near the bottom of the press releases. Let’s just place all our hopes
in this bag, because if the bag proves to be full of things we can someday understand than we will for sure be able to come up with the treatments we have yet been unable to thus far come close to discovering. After all this is the first new “wish list,” they have come up with in twenty years. Of course they neglect to mention that the original “wish list” of how to accurately, consistently, and without false positives diagnosis folks with Alzheimer’s disease that they same folks proposed years and years ago never panned out, never reached the levels of validity and reliability they hope/suggested/wished for when they released the “old” wish list of diagnostic criteria year ago.

Of course readers should remind themselves I am not “the voice of dementia.” I do not claim to represent anyone’s feelings or thoughts other than my own. In addition, increasingly my representation of myself reveals more about slipping cognitive skills, and less about what I think I’m thinking about then has been the case in the past. I do know many folks living with dementia hunger for science about their symptoms/form/progress of their slipping cognitive abilities. I do know many of us fear the lack of science, fear what passes for “breakthroughs”, fear the lack of any forms of growing consensus about this or that press release and the claims it makes in the headlines. I do know many of us fear the last paragraphs of dementia research press releases that inevitably end up admitting the more we know, the less we know we know - and if only we had more money to spend faster on researcher such as this or that surely we might actually know some things worth knowing.

Same song, different verse? Same singers, same volume, same tune, just different words in a different bag. I am just going to let this change rush by me. If those who should know better, but obviously do not, want to spend time and money playing with this bag I suppose it is more potentially useful than playing with nude mice. But I am not investing my time, interest, hopes, future in an idea whose science has not yet

come - so far just the press releases keep coming and going.