Moving Beyond the Basics

Making a Connection

October 20, 2016

As a caregiver, you may feel you’ve exhausted all the solutions and advice on the Internet and still be hungry to find more. I believe ubiquitous tools (like Facebook, Twitter, and Pinterest) can be helpful for finding quick solutions and identifying people who think like you.

But.

Once you’ve stopped the bleeding, you might start asking different questions.

While you may have started out wondering where can I get reliable information? eventually, those questions evolve into is this going to happen to me in 20 years?

Am I doing what I need to do to take care of myself?

If this is such a big problem, why aren’t there any solutions?

After putting in 3.5 years of caregiving, I was seriously worried about whether or not I was at a risk for Alzheimer’s and if there was anything I could do about my risk factors. From our press release today, more than 80 percent of trials are currently delayed or closed because researchers cannot find eligible patients. This problem is especially pronounced in Alzheimer’s disease where seven to ten million people are needed for registries to meet planned clinical trial enrollment requirements. Research has found only one-third of Alzheimer’s trials in a given year are able to find enough people to take part. Yet, in the words of UsAgainstAlzheimer’s Co-Founder and Chairman George Vradenburg, “the actions taken to date have not been commensurate with the growing threat presented by Alzheimer’s disease. Alzheimer’s is a cancer-sized challenge requiring a cancer-sized solution.”

So, how do we change that?

AList1000.org

There are a lot of really smart Alzheimer’s advocates out there. These advocates are mobilizing to motivate people to take charge of their future. The advocates on the A-List are a self-identified, online Alzheimer’s disease advocate research network of the worried well. If you’re reading this article, you’re likely a worried well.

Worried wells are typically defined as those who:

  • are living with high familial risk
  • may or may not have memory loss
  • may or may not have a diagnosis of Alzheimer’s or another dementia
  • are a care partner of someone with dementia

The A-List motivates members of the worried well to use their collective voice to overcome scientific skepticism for the value of self-reported patient and caregiver information. They also work together to inform and advance research.

You may consider joining the A-List if you believe insights from your own experience with Alzheimer’s journey can help others, if you think we can help researchers find a cure faster or if you believe prevention and brain health matter (visit the A-List FAQ’s to learn more).

Is clinical research right for us?

Now that you’re thinking about participating in research, you may be thinking, is clinical research right for us? That’s a question we’ve had on our mind, too.

This week, we launched a tool to help you determine that. Our goal is to connect those worried about getting Alzheimer’s with those who are conducting research. Like all Roobrik tools, this assessment takes about 3-5 minutes to complete. At the end, you’ll know how and whether you want to participate in clinical research. We’ll even help connect you with trials who are looking for candidates like you.

I’m not currently caregiving, but know I will be a caregiver again. One day, someone will have to be my caregiver. In the meantime, I want to do whatever I can to help further research so there may be a cure for me or the person who provides care for me. I’m not going to find a cure for Alzheimer’s, but I can spend 20 minutes every couple of weeks participating in research to help someone else find the cure. I owe myself that.

Want to know more? Consider trying Is clinical research right for us? Or read the press release about the work we’re doing with our partners.

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