Will the real Alzheimer's Disease Please Stand Up?

Should we watch as more and more dollars are thrown at researchers who sit with mice, models, theories, guesses and hopes? Or should we stand up and advocate for more psycho-social research into how we can better cope with our symptoms?

For me it isn't even a close call. I'm not advocating giving up bench based scientific research, but clearly the people who allocate our tax dollars for research, the people who ask us for our own money to “support people with Alzheimer’s disease” have lost site of the consequences of this disease on people in favor of searching for a cure. They have priories that place research before people, tomorrow before today. One National organization spends sixty cents + of every dollar it raises on supporting the search for a world without Alzheimer’s. That leaves forty cents to cover overhead, fund raising, advocacy, other National initiatives, and oh yes with what is left a few cents for dealing with the world with Alzheimer’s.

That’s back-asswards! It’s people who don’t have the disease focusing more on other people who don’t have the disease than on people who do have the disease. What am I missing here? It’s just plain wrong-headed. And now along comes these researchers who suggest it’s more than a case of the wrong priorities. It is a case of misdirected, misspent efforts based on false assumptions. Assumptions promoted by individuals who have much to gain by promoting the assumptions. These aren’t evil people, it’s just the unintended consequences of their well intended actions produce more problems and less solutions for the people for whom they claim to champion.

Let's all stand up, all 5 million of us. Let's let others arm wrestle over brain aging vs. a healthy brain under attack by a disease which is amenable to a cure.

Let's ask for, demand more support and research for our issues, today. Many of the national and local organizations which raise money in the name of our disease have decided for us that the research for a cure is much more important (look at how they spend their money), than supporting us, responding to the fears which plague our hearts, minds, and families.

It's time for an immediate change from a primary emphasis on the search for a cure to a primary emphasis on the search for evidence based strategies and behaviors to support individuals and families who struggle with the symptoms of dementia every day.

Currently the Alzheimer’s cart seems full of eager researchers, publicists, spokespersons for Alzheimer’s organizations whose primary purpose is raising funds to distribute to those folks standing in the cart, well intended governmental officials and relatively well off donors who want to find a cure for this disease.

Behind the cart, way behind the cart, are 5,000,000 horses all of whom are living with and in the disease. They are waiting for the cart to move in their direction. We are impatiently waiting for those standing in the cart with their models, theories, mice, rats, and hamsters to find a cure. Many horses have died over the past twenty or so years waiting for the cart to move, to produce something(s) of value to them. The rest of us still stand and wait. We are told to be patient. We are from time to time told results are just around the corner. The pipeline (whatever the hell that is) is full of pills to help us. We should just open our mouths, and keep them open at the end of the pipe and swallow whatever falls out. The most recent pill that fell out of the pipe, and fell on the floor because it didn’t do what its inventors/researchers/publicists claimed it would do.