Bob DeMarco Alzheimer's Reading Room

Sunday, January 30, 2011

Generation Alzheimer's Hope or Hopelessness ?


As a person with early onset familial Alzheimer's/vascular dementia at the mild cognitive impairment stage I am upset by the lead quote in the Alzheimer's Association's "Generation Alzheimer's" report.

A few days ago the Alzheimer's Association published a press release to announce a new report -- "Generation Alzheimer's". I thought the opening quote was a bit harsh.

Was the intention to raise awareness about Alzheimer's disease; or, to use tabloid rhetoric to gain attention?

One of our readers found the lead quote upsetting. So upsetting, she sent me this response.

By Kay Mary Baum

Generation Alzheimer's Hope or Hopelessness ?
Kay Mary Baum
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 Boomer's report. These words of "no survivors" are demoralizing to all of us with the disease - the very persons you are working for.
"Alzheimer's is a tragic epidemic that has no survivors. Not a single one," said Harry Johns, President and CEO of the Alzheimer's Association, highlighting the Association's latest report.

I objected to these same words two years ago when you had a public official say them to promote your public policy forum.

You took them off the site but said they really increased sign-ups.

The ends do not justify the means.

There is no excuse for such hopeless words that further stigmatize the disease. I have found people give more money when hope is more obvious.

I know you say at the end that this can change, by finding a cure. Your own science advisor is not comfortable with the word, "cure" for chronic diseases like ours.

Epigenetics tell us we are going have to clean our environment, improve nutrition, promote physical activity, and act for other reductions in risk factors in order to meet the Alzheimer's challenge.

Please run these offensive words by your Early Stage Advisory Committee and see what they think about this hopelessness being your lead quote.

I ordered the report so I could see what was new.

There is nothing new in the Boomer Generation Report and it appears to be out there mostly to raise money for the Association, very little of which actually goes directly into research.

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 your goal is to prevent and minimize the numbers of persons going into advanced stages of cogntive-related diseases that research would help that cause. And all of society could make changes to help reduce the costs of our generation going into nursing homes for advanced dementia.

PS -- you might have your scientists look at your sites's Myth section. It seems not to have changed in years and is not as nuanced as current independent research provides.

_______________________________________________

Some of Mary's words describing herself.

I now hike our hilly woods again. The more I hike the easier it seems to find words. My new adventure with photography is also a meditative break from over-stimulation. Working with others toward documenting and restoring nature gives me immediate goals.

I see now that my whole life has prepared me well for my calling to promote awareness and hope for memory. Even more powerful than memory is the power to hope for a healthy world and to connect with others to build that future of wellbeing for all ecosystems and communities.

When my framed nature photographs are not on exhibit elsewhere they hang in local assisted living communities. You can also see some of them at www.hopeofalzheimers.com. They are frequently premiums for donations to forMemory, Inc.


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Original content Bob DeMarco, the Alzheimer's Reading Room