Aug 2, 2011

Eastern Tennessee Chapter of the Alzheimer's Association Declares its Independence from the National Organization, Is this the Beginning of a New Trend?

Yes, one by one Alzheimer's caregivers will come out of their caves, and into the light of day. I know I have to be patient. It isn't easy. I can't wait to see it develop.

By Bob DeMarco
Alzheimer's Reading Room

Then Eastern Tennessee chapter of the Alzheimer's Association has declared independence from the national Alzheimer's Association.

Citing a new "fund sharing" agreement that was put in place three years ago, Executive Director Janice Wade-Whitehead, Alzheimer’s Tennessee, said that as much as 40 cents of every dollar raised locally in Tennessee was now going to the national Alzheimer's Association in Chicago.

Separating from the national Alzheimer's Association in Chicago isn't always easy. It took Alzheimer's North Carolina two years to gain its independence. They finally won their independence via a court appointed arbitration. As part of that verdict, the Alzheimer's Association was directed to pay $203,344 of the legal costs incurred by Alzheimer's North Carolina.

It appears that the Alzheimer's North Carolina secession caught the attention of other local Alzheimer's Association chapters around the country.


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Alice Watkins, executive director of Alzheimers North Carolina, says its board voted to end its affiliation with the association because the national group wanted too big a share of funds the former chapter raised, solicited its own funds in the region and demanded the local chapter use and pay for back-office services the national group provides.

While I don't have a complete list of chapters, a similar situation occurred in Wisconsin.

The spending practices of the Alzheimer's Association, and many of the largest charitable organizations, are now being questioned all over the country.

Trisha Torrey wrote an interesting article on About.com,
Dear "Unavailable" Alzheimers Association - Please Leave Me Alone!
My mother passed away from Alzheimer's Disease in November 2009. For many years before that, and a few times since then, my husband and I have donated money to the Alzheimer's Association in honor of my mother. We have always felt as if we were supporting research that would someday be used to prevent or treat this horrible disease.

But we have stopped making those contributions to that organization. ..
Based on the trends I am seeing, it is my belief that there will be ground swells of local activism all over the country. I believe that Alzheimer's caregivers, present or past, will begin to come together and begin to focus directly on the problems and on the issues that are most important to the national Alzheimer's caregiving community.

I am not talking about support groups and pamphlets. I am talking about memory cafes, caregiver respite banks, and the coming together of Alzheimer's caregivers to defeat loneliness, address respite issues, and basically to hold hands.

We are the largest and most important fraction of the Alzheimer's community.

If they won't remember us, we will remember each other. One by one. Holding hands.

We are the ONEs and sooner or later we have to come out of our caves and show the world we are the survivors; and that, there is life after a diagnosis of Alzheimer's disease.

Yes this is the beginning of a new trend. I know from my many years on Wall Street that new trends start slowly. When a new trend begins it is hard to spot, and it moves slowly. Trends, if important and wanted, gather momentum and strength over time.

Look at the IPod, to the IPad, to the IPhone. Now that is one incredible product trend. You can see those consumer products everywhere.

Yes, one by one Alzheimer's caregivers will come out of their caves, and into the light of day. I know I have to be patient. It isn't easy. I can't wait to see it develop.

My name is Bob DeMarco.

I am an Alzheimer's Caregiver.



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Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 2,800 articles with more than 602,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room