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December 02, 2010


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Richard Taylor

Hello, several years ago I was a proponent of screening, then the more I learned about how little anyone really knows about dementia and it's many forms, and when I experienced first hand the trama of the diagnosis I changed my mind.

We have the dementia cart, full of instruments, imaging machines, gene counters, and wisful thinkers way ahead of the horse of science, the team of horse that comprise a consesus as to exactly what it is that is being measured.

It's reckless to throw around terms that are know to product major emotional and life changing responses without out first knowing lots more than we now know about dementia, alzheimer's disease, and how the brain works on a good day.

All this testing talk takes away from dealing with the everyday problems of living that are common to many folks with many forms of disability. We spend too much time measuring and try to measure something we can't all agree on exactly what it is we are measuring.

Useing words, especially the words, thoughts and feelings of somone other than the individual primarily impacted by the symptoms is worrysome at best and just wrong at worst.

And we still don't have a consesus as to staging the forms of dementia, the progression of each of the forms, the role each of our unique brains plays in repressing the observable symptoms, etc. etc.

Dare I say physicians are looking for something quick, easy, and inespensive that produces a number that they can then compare to chart to determine what box we are to stand in for the rest of our lives.

Let's stop this rush to judgement of all folks using the same chart, the same questions, and relying on the consistency of observational abilities across spouses.

Let's just stop all this, and start talking with and about the everyday problems of living with the symptoms of dementia, and the role the medical community should play in providing leadership to families that are faced with these symptoms.



My experience with chronic illness and dementia is that without an accurate diagnosis, there is not going to be a helpful or efficient treatment. My father was the victim of a false Dx of Alzheimer's disease and therefore was given unneeded medication that contributed to his frailty and an earlier death. He did have dementia, however, and a true diagnosis of the type of dementia he was suffering from might have helped him. Wrong diagnosis or no diagnosis--no possibility of help or hope.

We write about this problem and others we have faced as caregivers at

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