Alzheimer’s Registry and Resources

Auguste Deter. Alois Alzheimer's patient in No...

Auguste Deter. Alois Alzheimer’s patient in November 1901, first described patient with Alzheimer’s Disease. (Photo credit: Wikipedia)

When I was the Chief of Staff for the Joint Committee on Health Care in my State Legislature, I ran a lot of health care committee hearings. We would often be there for hours listening to testimony on a variety of health care issues like Alzheimers Disease.

I knew that the people testifying needed someone to listen and to help. The stories I would hear would be hard to hear, but one issue that would come up each session would be the issue of research and funding to prevent and cure Alzheimer’s Disease.

It always just seemed so senseless; often going undetected or just attributed to the signs of old aging. By the time a family member would realize the seriousness of it, and that it was more than just forgetfulness, the diagnosis of Alzheimer’s would come and there was little their loved ones could do. The senseless part of the disease comes from the fact that it can’t be currently be prevented, treated or cured. Friends and family had to watch the person they knew become someone they didn’t know…and didn’t know them. Their father, mother, brother or sister, would ultimately die because they would forget to eat, drink or breathe. So while Alzheimer’s is a form of dementia, it is also a cause of death.

Statistically, 5.4 million Americans are affected by Alzheimer’s and there may be more as identification of the disease is often missed by some physicians. One in eight Americans over the age of 65 has the disease while it goes to one in two Americans by the time they reach 85. While genetics play a part, it is only in a small number of cases (less than 1%). As to the “why’s” of the other 99%, the risk factors are unknown.

So the big thing that needs to be done is to find some answers to the ‘why’s.

Alzheimer’s is a devastating, debilitating and incurable disease of the brain. Its symptoms develop slowly, although researchers now believe that the actual neurological damage begins years or even decades before the first problems with memory or  confusion surface. Those symptoms are progressive and ultimately rob the individual of mental and physical function. As our country ages, the number of people touched by Alzheimer’s only continues to increase. Already more than a third of the U.S. adult population has some personal connection to the disease, through a spouse, family member or other blood relative.” (Source: Alzheimer’s Prevention Institute.)

The Alzheimer’s Prevention Registry may be the key to unlocking those answers. If you are over the age of 18, you can sign up (for free) to be informed of the latest and to drive focus on finding reasons and cures. You can volunteer for surveys or studies for prevention research too. There are no other requirements. You only have to be 18+. All in all, the Registry is to provide a collective group of passionate and caring people who want to make a difference in the life of someone with Alzheimer’s, someone caring for someone with the disease, or those who may be concerned that they may have a history that puts them at risk.

Why am I writing this post? Because I think this is a simple way to get involved, to care and to make a difference. For free. It’s not about donations per se. It is about information and a collective resource to find answers, and to share that information and those answers.

So if you know of someone who has lived or is living with someone with Alzheimers, check out the registry, get support, get answers and let’s get a cure.

In addition to the Registry, here are other resources you may want to check out, and please consider sharing this post with family and friends, whether via Facebook, Google+, Twitter, or Pinterest. The buttons are below!

Alzheimer’s vs. normal aging:

Alzheimer’s vs. dementia, and prevention

Alz Prevention Registry Fact Sheet

Alzheimer’s Disease Facts_Figures_Fact Sheet

 

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About Charlene DeLoach

As a Boston Mom Blogger in Massachusetts, Charlene DeLoach doesn't care about the megapixels on a smartphone. She only cares about whether it will survive being in the hands of her kids.

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