Posted 3-30-19
One of the most challenging things about understanding Alzheimer’s and related dementia (and about mental illness) is misinformation and stigma. Why is it that we can work together and share information so effectively in other conditions like heart disease, stroke and cancer, but information, treatments and cure potential is all over the map on brain conditions?
In my opinion the Alzheimer’s information/treatment/cure problem is not caused by :
–The fact that we puritanically hate the wonder cure Marijuana, so we hide its merits from the public. Their lobby will say and do anything to legalize it. That isn’t it.
–The fact that there isn’t a market financial gain for a cure that is greater than the nursing home industry to find a cure. This is a silly thought propagated by people who hate hospitals and pharmaceutical companies and who are blind to facts. According to the Alzheimer’s Association, merely having improved methods for early diagnosis for the disease would worth “$7.9 trillion in health and long-term care expenditures.” Imaging what a treatment and a cure would bring the company??? I am not an economist (but I do have an MBA), but it doesn’t take one to surmise that these costs far outstrip what Medicaid pays nursing homes now.
The fact that it is an uncommon condition or that it is becoming more rare, so the word just hasn’t got out yet. Sorry…I had to have a third point for symmetry! According to the Alzheimer’s Association, 1 in 3 Seniors die with Alzheimer’s or another dementia. It kills more than breast cancer and prostate cancer combined.” Or how about this from the same organization: “Between 2000 and 2017 deaths from heart disease have decreased 9% while deaths from Alzheimer’s have INCREASED 145%. Nope, I suppose that ain’t it. 😉
So why can we not even come up with a stinkin’ cause, a usable treatment for conditions, or especially a cure?
I should preface this by saying that I am conservative. I am right of Reagan in most cases. In this conservative writer’s opinion, the most likely logical reason we are so messed up in the information, treatment and cure of this disease is we don’t spend enough on research compared to its cost to the economy. According to the Fiscal Year 2019 Alzheimer’s Research Funding Fact Sheet: “For fiscal year 2018, Congress provided an additional $414 million in Alzheimer’s research funding at the National Institutes of Health (NIH). With this increase, along with previous research investments, the NIH is expected to spend $1.9 billion on Alzheimer’s research in 2018. However, this still means that for every $9,700 Medicare and Medicaid spend caring for people with Alzheimer’s, the NIH spends only $100 on Alzheimer’s research.” Spending much more on research easily makes financial sense!
The Alzheimer’s Association and the hundreds and hundreds of area agencies on aging as well as many other advocacy groups do yeoman’s work trying, but the news just doesn’t get out there well. 🙁
Maybe another factor is that this umbrella of conditions, much like the mental heath condition spectrum, fails to have a sexy marketing face to them. It is easy to slap some school children in front of a camera and tug at heart strings to get funding for anything and everything. I worked in schools for a decade…funding is a challenge, but it gets done just fine. But seniors (most with Alzheimer’s are in this age group), to many, have lost their utility and value. “They have lived a full life” many consciously or subconsciously say and/or think. This is an atrocious result of the devaluing of human life to merely what the person can do for you instead of having an intrinsic, unalienable value. Terrible. 🙁 Add to this that most seniors proudly choose not to fight for their own generation’s healthcare funding as hard as they should, that seniors tend to be quite political party loyal, and you get more of a chance of funding and information issues.
Rant over. Let me conclude with a couple things we do know:
Social media has lots of bad information. Even I used to think beta-amyloid plaque were universally thought to be one of the two main causes (with Tau tangles being the other). Billions have been spent to fight this plaque with the same result every time: a placebo works just as well. 🙁 Slowly this failure may be turning around. Be cautious of believing even seemingly reliable sites…many are just wrong. I am not a scientist and neither are the writers of this misinformation on these sites.
There is NO CURE NOR SOLID TREATMENT for Alzheimer’s. Not now. Not 25 years ago when President Reagan revealed in a now famous letter that he had the disease. Studies and drug trials come and go. I hope there will be something soon. And please note: You do not have the cure that you can share with me and neither I with you. A few drugs may help symptoms like hunger and sleep problems, but they in no way address the cause.
This disease stinks and needs to go! Serve. Advocate. Participate in trials as they come out if you can. Give money and time to organizations that help families and patients to free up money for more research. Pray. Love those hurt by this umbrella of diseases. Call your legislators. Walk in an Alzheimer’s walk. Do something/anything. 🙂
Thanks all. 🙂
#EndALZ