As many you know by now, November is National Family Caregiver’s Month and National Alzheimer’s Disease Awareness Month.
Although my father was never formally diagnosed with Alzheimer’s Disease, he did have vascular dementia. Because he also had severe congestive heart failure, we opted not to attempt a formal diagnosis nor utilize the various medications that many who have been diagnosed with Alzheimer’s Disease receive.
Once you have been a caregiver to a person with dementia, you will always wonder if you are going to be diagnosed with it yourself. Every little “senior moment” can cause worries about ending up with this dreaded disease.
SO when I heard about The Alzheimer’s Prevention Registry, a registry created by Banner Alzheimer’s Institute (BAI) in conjunction with Banner Health and other partnering organizations, I decided to sign up. It is a resource for those who want to stay up-to-date on the latest news about Alzheimer’s Disease, scientific advances, prevention initiatives and overall brain health (something that is on the mind of MANY boomers these days).
In addition to those resources, they provide news about the latest research studies and how potential participants can become involved with these studies if they so desire. Studies are often delayed by a lack of participants so it is in everyone’s best interest to be aware of these opportunities. 80% of research studies fail to attract enough participants which is really so sad.
The Alzheimer’s Prevention Registry works closely with the Alzheimer’s Association and are a compliment to the Alz Association’s Trial Match program. Participation in any study is never mandatory.
The registry is a partnership of:
- Alzheimer’s Association Trial Match
- Banner Health
- Global CEOInitiative on Alzheimer’s Disease
- Geoffrey Beene Gives Back
- Cleveland Clinic Lou Ruvo Center for Brain Health
- Columbia University in the City of New York
- USAgainst Alzheimer’s
- Johns Hopkins University
- Massachusetts Alzheimer’s Disease Research Center
- The Mayo Clinic
- University of California San Diego
- University of San Francisco Center for Imaging of Neurodegenerative Diseases
Another reason I signed up is because our family has a disease known to be a possible contributor to Alzheimer’s Disease. You may want to sign up due to your family history or to simply honor a loved one or friend. This is not just a registry for persons who have already received a diagnosis.
Some questions you may have about the registry:
Will I be required to give my personal health history?
No. Your name, e-mail address, gender and zip code are all that are required.
Is my personal information protected?
Yes. It is never shared.
I understand that I will be offered the chance to participate in certain research studies. Is participation mandatory to remain in the registry?
No. Participation is never mandatory.
Alzheimer’s Disease is not a normal part of aging. It is devastating, incurable and is the 6th leading cause of death in the United States but is the only one in the top 10 that has no prevention or cure. Someone is diagnosed with Alzheimer’s Disease every 67 seconds! For a person with Alzheimer’s disease, the annual cost of home care is estimated at $76,000.
If you are a family caregiver, know someone who has been touched by Alzheimer’s Disease or just wanting to be of service, please consider taking a moment to sign up for the Alzheimer’s Prevention Registry so that Alzheimer’s and other types of dementia can be eradicated more quickly.
You may also connect with them by e-mailing info@endalznow.org, by calling 1-888-StopAlz or by catching them on Facebook or Twitter .
*Although Banner Alzheimer’s Institute is a nonprofit organization, I received compensation for writing and posting this article.
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