LEWY BODY DAILY JOURNAL

This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.

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Thursday, June 5, 2008

RECRUITING FOR DEMENTIA STUDIES:

"Studies of Thinking and Memory in Healthy Older Adults and Patients with Dementia."

Hi Pauline here.

I’ve been in touch with the Center for Translational Cognitive Neuroscience at Bedford VA Hospital, In Bedford, Mass. They do memory studies usually involving patients with different types of dementia and also require healthy older adults (65-85) to serve as controls. A typical experiment requires the participant to view a series of items, either pictures or words, on a computer screen, and then be tested on their memory for those items.

Regarding the need for LBD patients, they said they would potentially be interested in working with this group- in fact, they had had run a few studies a few years ago with LBD patients the recruitment sort of petered out so the study has been put it on hold for a while. A bit of work would have to be done to the experiments so that they could run on the laptops in use these days, but they said it would be worth the effort if they could get at least 5 or so willing LBD participants.

Usually the studies take between 1 and 2 hours, and there are 2 types of studies- EEG studies, where they record an EEG while the participant takes a memory test (compensated at $25/hour), and computer-based studies, which are run on laptops (and thus are very portable) and are compensated at $10/hour.

Right now the tests are only at that facility in the Boston area, but I’m going to talk to them about remote access…I mean all they need is an EEG and a laptop. I know these kids are computer savvy enough to figure it out. So for all the readers out there…here is an opportunity to get involved in the cure. Call Josh at 781-687-3360. Tell him you are interested in the studies on LBD. (And that you read about it here!) If you can talk him into using a local testing clinic in your area, then we as a small clutch here should be able to provide enough testing candidates.

Remember they want healthy older adults (65-85) also as controls, so if you are carrying your Lewy down for the tests, you might as well take them too.

You may visit their web page here.

4 comments:

Spouse said...

We are in an annual study sponsored by the VA and Stanford that in addition to memory we also get overnight sleep apnea testing. I would be interested in your test if there is a way to sidestep the fact that GW has never learned to use the computer.
My other thought is that our study group might be talked into some sharing with your group.
Di

Pauline said...

You should call Josh. He seemed very willing to try to get something going.

Anonymous said...

Pauline - can you email me personally the info you have (the link to the website is broken)... I'm in MA and can provide the info to our local support group in MA. Thanks in advance for your response. Victoria

pauline said...

here is the link:

http://people.bu.edu/abudson/ctcn/participate.html