Public Comment

I am an 83 year old woman and a member of a genetic-Alzheimer's family. In my lifetime I am aware of nine family members who have been victims of AD, the last four in my generation. 

In the 20 years since an autopsy specified my mother's AD, dementia- research has mostly consisted of the very limited success of pharmaceutical trials. This tunnel-vision has resulted in my family's continuing tragedies. 

Currently, researchers are reportedly seeking new ways to identify pre-symptomatic members of such genetic families. They are searching for methods to identify those at high-risk, who are not yet experiencing cognitive impairments, so as to test "preventive" medications or life-styles. 

This testing is awaiting procedural determination, but there is no need of evaluating pre-clinical subjects, when critical diagnostic testing and histories already exist for those who have been diagnosed, or will be diagnosed, with dementia! 

There could be an unlimited number of study participants; families like mine that are desperate to find answers. Incredibly, current tests are now uncovering conditions that may be causing or aggravating cognition, without the further knowledge of probable linkage to COMMON causes. 

True causes and preventives of dementia would undeniably emerge in the comparative histories of millions of patients. A "National Registry" using instant computerized technology can provide the imperative missing evidence, and a vital public-reference for genetic links and statistics. 

The factors rightly being researched are "nutritional, pharmaceutical, toxic and environmental, genetic, social/economic, behavioral, medical (such as other neurodegenerative diseases and pathologies). The lack of volunteers that has been noted by the researchers as their greatest obstacle, is easily overcome if dementia evaluations become comparable statistics. 

A diagnostic framework and guiding terminology can be created, to organize categories, stages, and the ongoing global study of brain disease, but can the historical impediments of our political and pharmaceutical limitations finally be overcome?