Read this book, please.
It is to me irrelevant if you fully agree with their interpretation of the science of dementia, what is right-on is their understanding of the psycho social impact of being told you have the disease (or condition, or symptoms, or syndrome) has on people, more specifically yours truly and his family and friends. We have allowed ourselves to be captured by a medical model which just doesn't fit, doesn't serve us, and can't serve us.
We have swallowed messages from drug companies which are full of carefully and creatively worded claims that are based on assumptions about how the brain works, why it works a certain way, and how that causes a condition, a set of behaviors we have labeled as a disease. These assumptions are not a part of "the big picture" of how the brain works. There is no big picture. To start to paint small pictures is dangerous because we still have no firm, research based, universally accepted understand of what the big picture looks like. The picture is not like an x- ray. It isn't one or two or even three dimensional. It's not fixed. It is interactive, and it is dynamic in ways we only speculate about.
The message, the value for me from this book and my conversations with these thinkers is - the Medical-pharmaceutical complex and the organizations which claim support for us and the elimination of our disease as the reasons for being don't have answers, solutions, even the right questions for us to ask, to think about, to wish for answers to them.. We must ask our own questions and find our own solutions, Search out answers, work them out with each other and with the few knowledgeable professional scattered across the country.
The best and most important action we can take (or at least this is what I believe) is seek each other out. Find/form/try groups, people, organizations, services, and if they aren't working try something or someone(s) else. But, keep trying to find solutions to the psycho-social-physical-real-imagined problems which come attached to the words "you have dementia, probably of this or that type."
Like the military-industrial complex, that defines how best we should "lead the world" through military superiority, the drug company-Alzheimer organizations complex has defined for us what is going on between our ears and how best we should respond to it. In the longer run (although they have said for more than 20 years the run is getting shorter and shorter) research will produce a cure for the disease - so they tell us. More money spent on research should shorten the time it takes to find a cure. More money is by definition better than the same or less, according to their tortured logic.
And what of us living in the disease, condition, what-ever they end up calling it? Should we too be patient? Should we advocate more funds for research? Should be follow the leaders, or tend first to ourselves and our families?
