'Dear Mr. President:' A Letter From America's Dementia Patients

The new national policy initiative for early diagnosis will do nothing for the millions of Americans with dementia and those who love them -- unless we can give them a life worth living.
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Dear Mr. President,

Please appoint a champion of non-pharmacological Alzheimer's treatment to the National Advisory Panel on Alzheimer's that you recently established pursuant to the National Alzheimer's Project Act.

Current medications can slow the advance of Alzheimer's disease in some people, but offer no hope of a cure for the estimated 5.5 million people with Alzheimer's or other dementias in the U.S. today, for the many millions more who will soon receive an early diagnosis of dementia, or for the even greater number of people who love and care for them.

Mr. President, like most Americans, you probably know and love someone with dementia and you undoubtedly want a cure to be found for this horrible disease. But do you know that if a drug were discovered today it will not improve the lives of those with dementia now or of those who will soon develop it?

Drug development for dementia has hit a brick wall. The National Institutes of Health Consensus report states: "Currently, no evidence of even moderate scientific quality exists to support the association of any modifiable factor (such as nutritional supplements, herbal preparations, dietary factors, prescription or nonprescription drugs, social or economic factors, medical conditions, toxins, or environmental exposures) with reduced risk of Alzheimer's disease."

The new national policy initiative for early diagnosis will do nothing for the millions of Americans with dementia and those who love them -- unless we can give them a life worth living. The hope to diagnose people earlier, long before there are any symptoms is just that -- a hope -- for our children and their children, but not for anyone with Alzheimer's today. Drugs can't give people with dementia a life worth living. Non-pharmacological interventions can!

The New York Times published an article several months ago about a program at a small nursing home in Arizona that amazingly allows people with dementia freedom to do what gives them pleasure -- even eat chocolate! Readers overwhelmingly responded with joy that in this one case rather than being locked up, stigmatized, and denied their human rights, residents with dementia were treated like people.

We as a society need to make this a reality for all elders, even those who happen to be living with dementia, giving all of them the opportunity to make decisions and to have a dignified and fulfilling life. We as a society need to provide all those with Alzheimer's a life worth living. Drugs alone can't do that. Non-pharmacological approaches can.

New approaches to giving people with dementia access to their communities are emerging. Movie theaters and museums, for example, are opening their doors and providing special programs for people with even advanced Alzheimer's disease. New books are being published about how to engage people with dementia in lives they find satisfying, offering realistic hope for people living with Alzheimer's.

People from all walks of life and professions are crying out: Please do not condemn people already living with Alzheimer's to a life locked up at home or in an assisted living program or in a nursing home. Please give them the access to society they deserve -- give them their human rights -- by investing in non-pharmacological approaches and not just drugs.

I recently circulated a petition to leaders in the field requesting that the National Advisory Panel include an expert who will champion non-pharmacological treatments for dementia. I want that this paradigm be considered seriously by the panel, that the panel promote evidence-based non-pharmacological practice, that research methodologies and methods be included that can capture the effects of these interventions on people with dementia, and that the human rights of both those living with dementia and caregivers be respected. The petition argues that the ethical dilemma of early diagnosis without any medical solution can be resolved through active application of the non-pharmacological approach.

The response was overwhelming in terms of numbers and professional positions of signers.

Let me be clear that we do not oppose research to find drugs that will cure Alzheimer's and other dementias. On the contrary, we hope that new discoveries will be made in time to help our children and our children's children.

But for those suffering now and for the generation of baby boomers, please join us to promote dignity in the lives of people with dementia, reduce the stigma and fear that surrounds Alzheimer's and other dementias, and give hope to the millions of people with dementia today and those who love and care for them.

Mr. President, please heed this call to appoint a champion of non-pharmacological treatments for dementia to your National Advisory Panel on Alzheimer's.

Here is the link to sign the petition to have a champion of nonpharmacological treatments for Alzheimer's appointed to the National Advisory Panel on Alzheimer's of the National Alzheimer's Project Act.

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