There’s been quite a bit of discussion on the Dementia Advocacy and Support Network (DASN) message board about a sentence in the Alzheimer’s Association's generation alzheimer’s report:
Today, there are no Alzheimer survivors — none.
Several DASN members objected to the hopelessness of this sentence because they enjoy rich and meaningful lives, years after their diagnoses with Alzheimer’s. In at least some ways, they are Alzheimer’s survivors. One of them, Mary Kay Baum, summarized their feelings in some of her comments on the report.
" As a person with early onset familial Alzheimer's/vascular dementia at the mild cognitive impairment stage, I am upset by the lead quote of your boomers report," she wrote. "These words of 'no survivors' are demoralizing to all of us with the disease - the very persons you are working for….There is nothing new in the Boomer Generation Report and it appears to be out there mostly to raise money for the Association….It would be helpful in future reports on our generation to highlight the many things that people my age (born 1947) who are boomers can do to improve their health and reduce their risks of Alzheimer's and related dementia."
If “survival” means “disease-free survival,” then technically the Alzheimer’s Association statement is correct. The idea that there are no survivors is connected to the view of Alzheimer’s as a terminal disease. But Alzheimer’s is now diagnosed at very early stages, and its course varies greatly. At least for some people, maybe Alzheimer’s should be considered more of a chronic condition, and maybe we should call them Alzheimer’s survivors.
" As a person with early onset familial Alzheimer's/vascular dementia at the mild cognitive impairment stage, I am upset by the lead quote of your boomers report," she wrote. "These words of 'no survivors' are demoralizing to all of us with the disease - the very persons you are working for….There is nothing new in the Boomer Generation Report and it appears to be out there mostly to raise money for the Association….It would be helpful in future reports on our generation to highlight the many things that people my age (born 1947) who are boomers can do to improve their health and reduce their risks of Alzheimer's and related dementia."
If “survival” means “disease-free survival,” then technically the Alzheimer’s Association statement is correct. The idea that there are no survivors is connected to the view of Alzheimer’s as a terminal disease. But Alzheimer’s is now diagnosed at very early stages, and its course varies greatly. At least for some people, maybe Alzheimer’s should be considered more of a chronic condition, and maybe we should call them Alzheimer’s survivors.
I agree that a lot depends on the definition of survival and of Alzheimer's disease. I know of no person who, after she was somehow definitively diagnosed as being in very late stage Alzheimer's disease, suddenly woke up with no hint of Alzheimer's and went on to live Alzheimer's-free for years to come. But highlighting that peculiar concept on the top of the Alzheimer's Generation Report is false hopelessness. It misses the real challenge to our baby boomers. Many scientists recognize that what we call Alzheimer's is a range of chronic syndromes to be managed, rather than a sudden acute condition to be cured. Let us work together to explore ways that this generation can live well with Mild Cognitive Impairment (MCI) of probable Alzheimer's etiology. Let us learn how to reduce the risk that MCI, or even subclinical Alzheimer's, will decline into late stage dementia Alzheimer's. Many are reducing symptomology and maintaining good quality of life. To me, survivors are persons who have had medically documented cognitive decline, but who have stabilized or reduced their symptoms in time to prevent becoming demented. I hope that I am a survivor, but only time will tell. My survival does depend upon my medications, nutraceuticals, and my lifestyle, but even more so on the health of the planet. And for a clean environment I depend upon the work of many. That is my challenge to my fellow Boomers. We should not be the Alzheimer's Generation. It is a matter of life or death that we become the Wellness Generation, wellness for individuals, all communities and the earth. That is how we all survive.
Posted by: Mary Kay Baum | January 31, 2011 at 08:57 PM
Since Alzheimer's is diagnosed by a pathologist's examination of a brain after death, Alzheimer's is always fatal -- by definition.
The scandal is that pitifully little is spent to help people live well with various symptoms "diagnosed" as probable Alzheimer's or probable dementia of some other sort.
Posted by: Don Moyer | February 01, 2011 at 07:57 AM
This terrible statement reminds me of my father complaining that everyone he knows who went into an assisted living or nursing home eventually died there... so according to the Alzheimer's Association's logic, there should be a warning about assisted living and nursing homes - "that there are no survivors - none."
Mary Kay I applaud your willingness to share with us your own situation and the reasons why this statement should be removed. I totally agree with the importance of prevention and taking care of our planet . I wish that the funds collected for research were also used to educate people about the importance of their lifestyles in preventing not only cognitive loss, but most health challenges.
Posted by: oran | February 01, 2011 at 07:58 AM
The statement itself is correct. To date, there are no survivors of this awful disease. You can have a great quality of life until your death, but AD is fatal. If we try to paint a rosy picture about how wonderful our live are until we become debilitated, we take away from the power and reality of the fact that AD kills everyone it infects. So, rather than argue with semantics, let's focus our energy into a cure, so that someday we CAN say "yes, there are survivors".
Also, take a look at the newly published research at the University of Texas Health Science Center at Houston that found that some AD may be contagious via infection, and similar to Creutzfeldt-Jakob disease.
Posted by: C | October 05, 2011 at 05:31 PM