As I always say: “There are a number of good people who want elders cared for and protected in Nevada. Reno is its own unique experience.”
That being said, this post will cover my seven year experience with the Alzheimer’s Association of Northern Nevada. One thing to grasp off of the bat: it is a franchised arm of the Association. What that means? In my dealings with bringing the local chapter’s fundraising and strong-arming issues to the head of the national group, it provided them with enough wiggle room to distance themselves from the chapter.
And you don’t have to take my word for it. Here is an excerpt from another individual’s experience:
Dear Alzheimer’s Association Leadership, I am writing to express my serious concern about the current direction the Alzheimer’s Association is heading, and to request that you make immediate changes to be more effective and more responsive to the needs of AD sufferers and their support groups. I am an AD caregiver (caring for my wife) who is very interested in supporting the stated goals of the Association. However, I’ve been reading with concern the news of local chapters seeking independence from the national program. I was even more disturbed to find that Charity Navigator gives the Association one of the lowest ratings I’ve ever seen (and I’ve looked at over 100 charities on that site). My concern is twofold: first, I believe that support for the Association is going to continue to drop (or be withdrawn) as long as your effectiveness ratings remain so abysmally low. Second, I believe it is essential for us to have a strong national program that can guide and focus programs to improve the daily lives of AD sufferers and caregivers — hence, I am saddened by the apparently growing movement away from the Association. Won’t you please take my comments into account and begin searching your hearts as well as your minds for corrective actions that can bring us all back into alignment on the movement to eliminate AD; and more importantly, to comfort those of us who are on the front lines trying to improve the quality of life for AD sufferers that we love and care for. Thank you very much for your consideration.
Sincerely, John Broadwater Williamsburg, Virginia
Here, another insider joins in.
Thanks so much for speaking out. Many chapters were unhappy with the national office in 2000 and left to form the Alzheimer’s Foundation of America: http://www.alzfdn.org. You can read an interesting article about the relationship between the two here: [See article, below.]
I’ve never understood why the national office doesn’t have two priorities: 1. Improving the lives of today’s family caregivers with respite, information and support; and 2. Funding research.
The national office has long held a reputation (as long as I can remember, going back to 1995) of being difficult to work with, territorial and incredibly political. Hopefully, your letter (and the letters that follow yours) will begin to make the needed changes.
Best, Denise Brown Caregiving.com
A Letter from Richard Taylor, Ph.D. – Alzheimer’s Warrior, Author, and Inspiration [as written]
Hello, to few folks surprise, I have been mulling over in my disorganized mind what next to do, where best to go with my issues/concerns with my/our/your National Alzheimer’s Association.
Let’s all stop dancing around the naked emperor
It’s time to stop pretending the National Alzheimer Association is doing what it is supposed to be doing, helping who it is supposed to be helping, spending our money like it is supposed to be spending our money.
It/they/Harry and Angela need our help/suggestions/offers of support. They have, to be kind about it, strayed from leading a movement to championing a narrow unrealistic dream of theirs and their Board of Directors. “Creating a world without Alzheimer’s”
They cannot be all things to all people. They don’t have the money, time or staff. They cannot be the champion of research and the champion of people living with dementia and their caregivers. They don’t have the money, time or staff. They should not expect their local chapters to finically support their 25 yearlong dream quest while at the same time providing services to local area residents living with all forms of dementia. This mandate from National puts local chapters in an awful position – raise lots of money, send 40% of to National – and with what is left over meet the needs of the folks living in your vast geographic area who are dealing with dementia. Educate everyone, support everyone, be everything to everyone – just plan on spending only .60 cents of every dollar your raise. This is absurd!
End of Excerpts
My first dealings with the Alzheimer’s Association of Reno came from my interest in being a sponsor for their annual fundraising event known as The Memory Walk. Interesting concept for the event, folks soliciting sponsors for miles walked as they gather in a march to honor their loved ones who’ve died from dementia.
The price for a table: $1500.
Yes, that much for a table at an event with a useful time of two, three hours.
I paid it. In the small/large community that is Reno the exposure as a new dementia care facility is useful. And I knew that serving the community in a good way would help in establishing our credibility with the Division of Aging, and those other people who needed to know about us.
Fair to say that for the $1500 other things were promised: Our logo would be on the local chapter’s website, as well as printed publicity materials … prominence at the event. Did any of that happen? No, it didn’t. But they sure took the money.
As there’s a lot to absorb here, I’ll add some other details in the next post.