About the Young-Onset Alzheimer’s Exchange
Responding to an unmet need
Some of us behind this initiative have been diagnosed with Young-Onset (also known as Early-Onset) Alzheimer’s Disease. The rest of us have family and friends with the disease. What we have in common is the frustration and difficulty in finding support services, practical guidelines, and medical research that specifically address the unique aspects of Young-Onset.
So we decided to pool our personal experiences, as well as whatever news, research updates, and available resources we could find, to create an information center for everyone in the same circumstances.
Achieving an online presence
With a generous grant from –(confirming with the donor they want public recognition), and help from Emory Alzheimer’s Disease Research Center, the development of this ‘Resource’ website has helped take the mission nation-wide. Though we are a network of individuals, rather than a Young-Onset Alzheimer’s organization, we plan to further grow that mission by offering new ways to connect with each other.
As a member of the same ‘community,’ this is your website as much as it is ours. The shared knowledge and resources here will hopefully bring the issue more into focus for making decisions and living our lives. We also invite you to contribute your story, as well as anything you’ve come across that might help others.
Looking at the challenges ahead
Being diagnosed with Alzheimer’s in your 40s, 50s and early 60s is particularly devastating. Even with so much life left, the disease robs families of important life milestones; graduations, weddings, and births will be missed. An elderly parent taking care of an adult child, or a recent college graduate moving home to attend to a parent takes an enormous toll on every aspect of life. Society is just beginning to awake to the widespread ramifications. The need for guidance and resources will surely grow.
Like you, we have all asked the question,“what caused this?” The truth is, there’s much more research that needs to be done.
We use the term ‘Young-Onset’ rather than ‘Early Onset’ to distinguish it from older individuals who are in the ‘early stages’ of Alzheimer’s disease.