You can’t escape the seemingly ubiquitous news stories about the latest cure for Alzheimer’s. There is only one problem: None of them are true.
Some are simply frauds. But many are over-hyped interpretations of serious research. You know the story…In what may be a major breakthrough in the battle against Alzheimer’s disease…
Over at Changingaging.org. Dr. Al Power wrote a terrific blog post the other day about how wishful thinking–and not a little greed–has combined to overwhelm good science when it comes to dementia research. We so want to believe in a cure that we are prepared to believe every rumor, false lead, or half-baked study that suggests a solution is near.
Dr. Power, a geriatrician, associate professor of Medicine at the University of Rochester, and member of the board at Eden Alternative, described the problem this way:
The media feeds the frenzy by highlighting every study with even a whiff of possibility as the next breakthrough. And the researchers certainly pick up on this and use the media hype to get their names out there in the public eye.
It is time to get real–both in setting the goals of research and in the way we conduct and report these studies. Irresponsible reporting does not help our cause and actually harms our efforts to improve the lives of people with dementia.
He is absolutely right. One consequence is that precious dollars are pumped into research aimed at a cure or prevention while almost no resources are available to help learn how to better care for people who already have dementia or for training or other assistance for their caregivers.
This battle over dollars has been going on for a long time. Drug companies, academics, and high profile advocacy groups such as the Alzheimer’s Association focus almost entirely on increasing research dollars for cure and treatment.
The Obama Administration’s recently-announced National Plan to Address Alzheimer’s Disease is also heavily weighted towards cure and prevention. Only about 15 percent of the $156 million the White House hopes to spend on this initiative is aimed at assisting people with the disease and their caregivers (and even some of that is for data collection, not direct support).
To be sure, the plan says all the right words about the need for clinical and caregiver supports. But its priorities lie elsewhere: Big bucks research projects aimed at cure and prevention.
As we think about this goal, we should keep two thoughts in mind: The first is there are many different dementias–as many as 100–and each likely has a unique cause and thus will require a unique approach. The second is that potential profits for developing successful drugs to treat these diseases are enormous and, thus, pharmacuetical companies will keep working to find solutions with or without government support.
This is not to say we shouldn’t continue to work towards a cure. Of course we should.
Not only is this research important for its own sake, but as long-time seniors’ advocate John Rother has argued, the best solution to the nation’s long-term care financing crisis may be a cure for dementia.
But so far, research is teaching us that these diseases are very complicated and progress towards cures or treatments is very slow. That’s why we should be working a lot harder to learn how best to care for people with these diseases.
Howard, how right you are! There was a heartrending editorial in the Wash. Post this morning about a high-level official in Prince Georges County MD who had been simultaneously dealing with his wife’s swift-developing early-onset Alzheimers disease along with the many serious challenges facing his jurisdiction. Predictably, the editorial ended with a call for a cure for Alzheimers. Duh. Who would argue? Still, the editorial struck me as a dodge of the most urgent need of all: what can we do here and now to ease the suffering of victims of this terrible illness and their families?
You raise some very interesting points, Howard. Just today, unfortunately another Alzheimer’s clinical trial was stopped because the drug did not reach its clinical endpoints. Educating caregivers and family members to deal with the many challenges of this progressive disease is key.
Johnnie Mesaros RPh
There no big financial rewards in better caretaking. No VC or investment bank is going to fund companies providing care for AD sufferers. Follow the money.
Dancing into the Fog|Alzheimer’s Disease|Signs of Alzheimer’s disease|Alzheimer’s sysmptoms|Stages of Alzheimer’s…
[…]Stop Hyping Alzheimer’s Cures, Learn to Care for People Who Have the Disease « Caring for Our Parents[…]…
Howard,
I am very disappointed to see you downplaying the important work of the Alzheimer’s Association. While they do have a focus on research, because ultimately we simply must find a cure for this terrible disease, it is simply misinformed for you to overlook the other important work that the Association does. The Alzheimer’s Association DOES in fact offer “resources… to help learn how to better care for people who already have dementia or for training or other assistance for their caregivers.” that you claim aren’t available. The Alzheimer’s Association operates a 24/7 Helpline in over 150 languages that folks can call for help (https://www.alz.org/help-support/resources/helpline). It also offers in-person support groups, online forums and conferences to help caregivers (https://www.alz.org/help-support/community/support-groups). The misinformation you are spreading is not helping, but rather hindering people from being able to find these resources. Instead of slamming the group, why not promote the parts of it that you do like.
[…] that Alzheimer’s could be treated by breaking down substances called amyloid beta plaque. Yet decades of drug trials based on this theory have failed. Now, there is some evidence that Aduhelm may reduce those plaques. But will it successfully treat […]
[…] that Alzheimer’s could be treated by breaking down substances called amyloid beta plaque. Yet decades of drug trials based on this theory have failed. Now, there is some evidence that Aduhelm may reduce those plaques. But will it successfully treat […]
[…] that Alzheimer’s might be handled by breaking down substances known as amyloid beta plaque. But many years of drug trials primarily based on this principle have failed. Now, there’s some proof that Aduhelm could cut back these plaques. However will it […]
[…] Alzheimer’s could be treated by breaking down substances called beta amyloid plaque. Still decades of drug trials based on this theory have failed. Now, there is some evidence that Aduhelm can reduce those plates. But will it successfully treat […]