My visit to the Health eBrain Study

Well, this time my poking around really got me into things. I had written Meryl Comer, author of Slow Dancing with a Stranger, because I was so touched by her experience. She just happens to be a very reachable kind of lady and full of passion for her focus; mental health. During our chat she asked if I would share the press release for the Health eBrain Study around noon EDT, September 29, 2014. And I did. Everywhere I could think of. I also went one step further – I took the test.

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It’s a simple test that really doesn’t take all that long to do. You do provide some demographic information, mainly so that the researchers can compare apples with apples, sort of. It is NOT an IQ test. It tests your response time, the ability to remember a sequence (both forwards and backwards) and your ability to assess changing information based on some really simple parameters. Your score is provided at the end of each section and you are allowed to practice – how many times I’m don’t really know. If you do decide to take the test, I suggest you close everything else on your computer (yes, even Facebook) so that you can focus and do your best. It also helps the response time on some of your answers. My mouse got stuck in a couple of places and caused me to register a few errors. Which is okay; you aren’t competing for a scholarship or a vacation or anything, but it is a nice thing to provide the most accurate information you can.

So what is all the fuss about? Let me quote from the press release.

Changes in cognitive efficiency are closely linked and can occur with depression, fatigue, stress, and long-term chronic illness. This impact is particularly severe for caregivers of individuals with complex chronic conditions like Alzheimer’s and other dementias, two-thirds of whom are women. The physical, mental and emotional burden over time can take as much as ten years off a family caregiver’s life. It also can increase the caregiver’s own risk for dementia. [The numbers Meryl gave me are 6-1].

“Over fifteen million unpaid individuals provide care to the 5.4 million victims with Alzheimer’s or other dementias. [Just to point out the math, that is less than 3 individuals per patient which means that most of us are working far more than one 8-hour shift, seven days a week, 52 weeks a year.] We form the backbone of all unpaid long-term care in the U. S. What happens to our loved ones if something happens to us?” (Meryl Comer, a 17-year veteran of caregiving and President of the Geoffrey Beene Foundation Alzheimer’s Initiative.)

I really urge caregivers to take this opportunity to contribute to serious research about the impact of caregiving. It can give us much needed tools to mitigate or defer the impacts of a mind on holiday.

I have attached the press release for the study. The list of supporters for the program read like a who’s who in the world of caregiving and dementia. You will also find links to the video and to the survey itself. Again, no money is required – just a few minutes of your time to increase the pool of information that researchers need so desperately to find ways to help the caregiving community and those they care for.

Health-eBrain Study link: www.health-ebrainstudy.org

Geoffrey Beene Foundation Alzheimer’s Initiative: http://www.geoffreybeene.com/alzheimers.html

US Against Alzheimer’s: http://www.usagainstalzheimers.org/

Meryl Comer on Facebook (great news feed on things going on): https://www.facebook.com/meryl.comer.alz

What it is all about: https://www.youtube.com/watch?v=7dD3ROvJvbo&index=1&list=PLETJvf11XiB_EmzOS44Py8YCRC4VzHLOr

 

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6 Comments

Filed under Caregiving Backstage

6 responses to “My visit to the Health eBrain Study

  1. Meryl Comer

    Dear Victoria,
    Thank you for translating the study into a user friendly experience.
    Since it is an IRB approved study, the instructions feel a bit wonky.
    This is the first round study. There will be another study that launches in November that will ask a bit more of those who sign up, but I think it will be worth it for ALL of us. I had the same experience you had when my Google reminder interrupted me during the luminosity test. I have asked for the instructions to be changed. Will keep you posted on the number of sign-ups. Let’s show everyone caregivers mean business and not to take us for granted.
    Best,
    Meryl

  2. The area you are exploring is a difficult one for many people, and making sense of it is becoming more and more central to more and more lives. I thought to take the test, but I don’t think I’m exhibiting any of the classic symptoms as yet, so I prefer to carry on in whimsical innocence. How wise that is only time will tell

  3. I had some errors on the first test attributable to mouse-clicking too quickly. Once I got used to it, I did better.

    • Thanks for joining in, Daven! Yes we really do need to get caregivers upfront with their own health. I am sure that a lot of them know the stress; but keeping it to themselves does not help.

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