To much fanfare from the Alzheimer’s disease research lobby, the Obama administration announced plans this week to dramatically increase federal funding on Alzheimer’s. But advocates for those who live with the disease are asking why more isn’t being done to educate the public and improve care and living conditions for the more than 5 million people who live with the various forms of dementia, of which Alzheimer’s disease a type.
President Obama’s budget for 2013 requests $80 million more than the $458 million currently allocated to the National Institutes of Health for Alzheimer’s research. The administration also announced another $50 million will immediately be made available for current research. The president’s budget is expected to also call for an additional $26 million in funds to help support families and others caring for people with Alzheimer’s.
Recent breakthroughs in understanding how Alzheimer’s spreads through the brain, damaging cognitive functioning and memory, indicate for the first time that scientists may be able to figure out what causes the disease, for which there is currently no cure or treatment. But until scientists determine that cause, no one can say with certainty whether a cure is possible.
In the meantime, advocates for people living dementia — foremost among them people such as Dr. Richard Taylor, an outspoken activist who also lives with dementia — are growing increasingly critical of the federal government’s kowtowing to the self-serving agenda of the National Alzheimer’s Association, drug companies and self-proclaimed Alzheimer’s experts. These organizations, critics say, are manipulating the federal government to focus too narrowly on a cure for Alzheimer’s, to the exclusion of the more than 50 other types of dementia and without adequately addressing the psycho-social dimensions of living with dementia.
For example, if you read the recently published federal DRAFT FRAMEWORK FOR THE NATIONAL PLAN TO ADDRESS ALZHEIMER’S DISEASE, which establishes the goal of “curing or preventing” Alzheimer’s disease by 2025, it focuses almost exclusively on Alzheimer’s. The word Alzheimer’s is mentioned 58 times (not including references to “the disease”) while dementia is mentioned only three times.
In addition, completely missing from the Draft Framework and the sources it cites as references are any mention of the many other types of dementia affecting millions of people or any mention of research on person-centered approaches to dementia care that have been developed in recent years, said Kim McRae, director of the Culture Change Network of Georgia. McRae has been urging dementia advocates to submit public comments in response to the Draft Framework, which accepted comments through Feb. 8.
“I guess that there hasn’t been any good research on dementia and the dementias, or any good person-centered and relationship-focused care in the past decade?” McRae posted on Facebook this week.
Taylor said on his blog that while he fully supports research into curing or preventing Alzheimer’s disease, it is the federal governments responsibility to also consider the needs of the millions of people living with dementia:
While I believe basic brain research should be expanded. While I believe pharmacologically based research should continue. Neither of these focuses should steal from the real need for research [on] how 5+ million people living with the symptoms of dementia can live a purpose filled, engaged, interpersonally satisfying life with the worsening symptoms of dementia.
- The Federal Government should take 6 months and decide for itself how best to spend its research dollars. Do not blindly follow the self-serving advice of “Alzheimer’s” researchers, associations, drug companies, or other “Alzheimer’s Disease experts.” Bring together social scientists, researchers from other fields, people living with dementia and their caregivers, and let hem each and all be a part of the process of evaluating and setting national goals and practices. Read what the NIH itself said last year about how successful Alzheimer’s Research has been, and what the outlook for success (or in this case not). What is needed is leadership to organize and fund research. This is what the different Federal funding sources could collectively accomplish.
rubycolorado says
June 7, 2015 at 4:09 pmRichard Taylor has a personal vendetta against the Alzheimer’s Association. I know him; I know he hates the Alzheimer’s Association. I don’t know why. The Alzheimer’s Association is of course not perfect but it is an excellent organization.
rubycolorado says
June 7, 2015 at 4:04 pmResearch is a long and frustrating process. Would you take back the years and dollars spent on finding treatments and cures for cancer? I have Alzheimer’s and I am an activist. I say let’s educate, take care of those with the disease AND spend money trying to find ways to prevent, treat and cure. It is selfish and short-sighted to whine that we don’t know what causes Alzheimer’s so why waste money on research. We will never find the cause, never find treatment or a cure if we don’t spend the years and dollars. Maybe we should quit spending money on foreign wars and there would be plenty to cover care AND research. Think about future generations.
alpower says
February 15, 2012 at 9:45 amAmen, Kavan.
theresaleslie says
February 10, 2012 at 1:02 pmSounds like the federal government may have got manipulated!
theresaleslie says
February 10, 2012 at 12:58 pmJust saw this am news flash on new cure for Alzheimer’s Disease, funny how the cure information is coming out now!
JaneFlemingOsborn says
February 9, 2012 at 10:23 pmHaving watched my mother succumb to what was sort of diagnosed as Lewy Body Disease by the Mayo Clinic and not being able to find much of anything about it on the internet that added to my knowledge, I totally agree that while Alzheimer’s Disease is powerfully identified these days, there are other kinds of dementia that do the same damage to people, their families and their caregivers.