As mentioned in previous blogs, one of the reasons federal and National Institute of Health (NIH) funding for this disease still falls short is due to the disclosure percentage. We know there are hundreds of thousands out there with dementia, and they are not only missing a proper diagnosis (only 45% disclosure rate v cancer at 90%), but we also have cause of death reports labeled as cardiac arrest for these patients, instead of organ failure caused by Alzheimer’s Disease (hospital ERs lack background files for confirmation). Therefore, our nation’s top neurologists and Alzheimer’s experts have deduced and believe that this disease is the 3rd leading cause of death, as opposed to 6th as reported. This is the only disease among the top 10 that cannot be cured, slowed down, or prevented scientifically in any way.
Finally, one of the best things you can do is donate information if you are a descendant of someone with Alzheimer’s. Please consider looking into contributing in this way through TrialMatch. People sometimes assume undergoing genetic testing means you want to find out if you have one of the genes responsible for the disease, but you DO have the option of finding out or not. If preferred, the doctors leave that confidential and at your discretion completely, but the point is that you helped by making your information available to researchers which holds more power than you realize!