Research

POSTPONEMENT AND MORE PATIENCE

Like a road leading to nowhere, help for Alzheimer's research is like a long road leading nowhere.

Government help for Alzheimer's sometimes seems as pointless as a long road to no where.

A good while back I read an article which gave some hope to a timeline when the puzzlements of Alzheimer’s might be solved or at least the disease would be effectively treated.  Granted, five years ago it wasn’t a promise and I don’t even recall where I read it.  However, the writers implied that some kind of breakthrough could be expected within 10 years – right around the corner – I thought. Since then I’ve read a zillion more articles and plea letters, but without any time frame.  While I knew that even 10 years for Ken would be too late, that ray of light gave hope to the Baby Boomer generation and my family.  2016 wasn’t all that far away.

Recently, we have a report from the special committee representing the National Alzheimer’s Project Act, NAPA, titled “Draft Framework of the National Plan to Address Alzheimer’s Disease.” What?  How many steps back was that?  Victory was the cry from Washington and applause was heard from the Alzheimer’s Association. It has not been well received by the Alzheimer’s Community and has raised the ire of many. A two and a half page comment by blogger Richard Taylor and posted on The Alzheimer’s Reading Room mentioned that this committee report was nothing more than a draft of a plan to plan to write a plan, and paraphrased a Woody Allan quote, “Life can be awful.  Now it has gotten worse!”

Apparently it boils down to more wasted time and money with no real plans to get to the problem which for loved ones and victims is AD.  But then what do bureaucrats do best?  Waste.  Not to mention the draft to plan to plan to plan took one year to compile.  Next report (plan) is promised in May.  Hasn’t anyone reminded Washington that the camel was designed by a committee?  If the camel with one hump isn’t strange enough, it took two committees to design the camel with two humps.

When we moved into our community many years ago the city and county officials ordered a study costing a good lump of money to find the most troublesome intersection in town.  My question and answer at the time was, “Why a study?  Just ask me, I’ve been there.”

Thirty years later it’s still our most troublesome intersection, but they’re working on it.  Sound familiar?

NAPA did arrive at five goals:

  1. Prevent and Effectively Treat Alzheimer’s Disease by 2025
  2. Optimize Care Quality and Efficiency
  3. Expand Patient and Family Support
  4. Enhance Public Awareness and Engagement
  5. Track Progress and Drive Improvement

The only one that’s truly important is No. 1, and how about cutting off five to seven years.

No. 2.  Optimize Care Quality and efficiency.  Really?  Authorities can’t even keep up quality control and efficiency with the existing care facilities.

Looking at No. 3: my friend cares for her AD mother whose disease is somewhere between mild and moderate.  Cherrie tells me funding was cut for the Dementia Day Care where she had been taking mom two days a week for the past several years.  Mom no longer gets to go. That’s not an expansion.

Enhance public awareness.  I believe the public is very aware of Alzheimer’s and its destruction.  Are they going to have Engagement police to force involvement?  Engagement will always be a matter of choice.

What is No. 5?  Why does Government have to track progress using up valuable dollars which could be better used for research?  Researchers issue their own reports on progress, success and failure.  Does drive improvement mean nag?  Who?

It has been said that funding from Medicare and Medicaid will be cut to help fund Obamacare.  If this is so, where is government getting the money for NAPA?

No, I don’t have answers for any of the above, or for the 10 million people with Alzheimer’s including my husband, my now-deceased father and mother-in-law, and my own mother also deceased, but I do know that changing the title from “The Dementia Crisis” to “The Alzheimer’s Crisis” won’t even put a finger in the dike, nor will four out of NAPA’s five goals.  Does all the hoop-la about the name change and the forthcoming plan imply that all of our public health problems under the microscope of Health and Human Services could be solved if only AD went away?

The Dementia Umbrella, with all of its brain altering diseases which includes Alzheimer’s, is what’s in crisis and all of those many victims are slowly slipping away; dying twice.  Does the title The Alzheimer’s Crisis mean to ignore all of the others, or is it because AD has skyrocketed to the No. 2 most-feared disease next to heart disease?

We already know there is urgency in finding at least a viable and enduring treatment without sacrificing precious funding foolishly spent on endless study plans, discussions and hyperbole. We, who have lived/live with AD, like our city’s bad intersection, have been there. No longer strangers to the disease, it’s been a part of our lives for years and we don’t need to waste any more money on these silly committees, paper-shuffling studies, or congressional members who stand around pontificating, pondering and shaking hands with one another for what they believe is a job well done.  We need the money to go into research and, perhaps, some help for those who are draining their life savings caring for an AD loved one.  The Dementia Umbrella is filled with catastrophic illnesses and they are world-wide problems with Alzheimer’s as No. 1.  Just fix it.

Originally posted 2012-01-28 05:08:43.

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