fromcuretocare

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In one of the videos of the campaign, Dr. Carmela Tartaglia states, "We are only a few years away from a cure of Alzheimer's disease"

Are we?

To learn why we are not a few years away from finding a cure for Alzheimer's diease, read my journal article Trust at Stake: Is the "Dual Mission" of the U.S. Alzheimer's Association out of balance?

Link to publicaly available full-text article:

https://journals.sagepub.com/doi/pdf/10.1177/1471301217719789

The portryal of a person in advanced stages of Alzheimer's disease on his death bed in the Alzheimer's society of Canada fundraising campaign is labeling, stigmatizing, and harmful.

Listen to this recent podcast from Healthnewsreview to learn why...

Title: The problematic promise of a "cure" for Alzheimer's disease produced by Michael Joyce, M.D.

Link to the podcast:

https://www.healthnewsreview.org/podcastmedia/podcast-the-problematic-promise-of-a-cure-for-alzheimers-disease/

It describes the harmful but rarely told effects of unfounded promises for cure of Alzheimer's disease that are often coupled with stigmatizing and hurtful labeling and stigmatizing messages about this population...

Unfortunatley, it has become the norm to predominantly use very stigmatizing images of people living with Alzheimer's disease in fundraising campaigns for cure of the disease.

Time for change.

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Making “Big Promises” in Alzheimer’s Research May Risk Public’s Trust

Merriam-Webster dictionary defines the word “Promise” as “a legally binding declaration that gives the person to whom it is made a right to expect or to claim the performance or forbearance of a specified act.” This letter is in response to Pam Belluck’s New York Times article entitled New Alzheimer’s Drug Shows Big Promise in Early Trial Results (July 26, 2018). The important article could have enjoyed enhanced credibility if it acknowledged an important but rarely discussed problem. That is, the possibility that frequent but unfounded promises for slowing or curing the disease may steadily erode public’s trust. Promising a breakthrough may be an effective research recruitment and fundraising strategy…but is it ethical? Is it fair to the people who have the most skin in the game – people living with dementia and their family members? The public should remain skeptic about these common promises until real and substantial impact will be demonstrated in Phase 3 of the study and in a more rigorous study using a large-scale sample of research participants (while carefully monitoring for and recognizing serious side effects).

Eilon Caspi PhD

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After logging on, scroll down to the heading MONSTER IN THE MIND on the lower right hand side to see the content of this poster.

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An excerpt from the article:

"For decades, most researchers have agreed that these plaques and tangles are the key malefactors of dementia, and that if you could clear them from the brains of patients, you would halt or reverse illness. Researchers have been especially focused on finding a drug that could erase amyloid plaques, and we now have dozens of compounds that do that in mice.

But this approach has led to failure in humans. Even when drugs can clear the plaques in patients’ brains, the disease continues to wreak damage.

Now some scientists believe that the focus on amyloid plaques might have been a mistake. Instead of looking at what goes wrong, they’re trying to understand what goes right."

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Dementia Action Alliance E-News (September 2017) on article: Trust at Stake: Is the “Dual Mission” of the U.S. Alzheimer’s Association Out of Balance?

Dementia Action Alliance's Partners share some Significant Issues and Learning Opportunities for You and Your Network to consider:

"Gerontologist & Dementia Behavior Specialist Eilon Caspi, Ph.D. raises a crucial question in his article “Trust at stake: Is the “dual mission” of the U.S. Alzheimer’s Association out of balance?”, published in the August issue of Dementia: The International Journal of Social Research and Practice:

The abstract states “.... Using numerous reports from leading researchers and practitioners, a case is made by which the “dual mission” is grossly unbalanced with predominant focus on biomedical research aimed at curing the disease compared to research and practices focused on the psycho-social impacts of and adaptations to living with it….”

To read the full abstract and article online click here: http://journals.sagepub.com/doi/full/10.1177/1471301217719789