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.