UC Davis ADNI Update

September 11, 2018

Today was the scheduled update survey for the ADNI study that we've been participating in pretty much since diagnosis. At first, the survey was done more regularly and in person with both of us in attendance, then it transitioned to longer intervals, then it became a phone interview.

First, the psychologist called to ask a lot of questions having to do with my husband's state of mind, moods, behaviors, and so on. I found it interesting that most of them would have been really relevant last year or the year before or even the year before that. But he seems to be past most of the issues she was bringing up at this point. It's sobering. Still, I think my responses were helpful, at least. She also asked questions about my well being, which I appreciated. It's important to track the patient, but it's also important to track how the patient's illness is affecting the caregiver.

Then, the research assistant called with the actual survey questions which, in my current state of mind, were laugh out loud hilarious to me:  Is your husband having trouble with his memory? Compared to 10 years ago, how is he at writing checks and balancing the checkbook? Can he remember a short shopping list? Can he remember a conversation a couple of days after having it? How is his driving? Is he able to read a map and find his way to a new destination? How is he at planning a project, preparing for it, and executing it? Regarding household chores, is he able to vacuum, do laundry, fold clothes? Lady, he can't put his shoes on or dress himself!

There was a lot more, but I'm sure you get the picture. These are the same questions that are asked every couple of years, and I think what they are doing is updating their database to track the course of the disease. I understand that. The only way they can track things is by recording your answer to the same survey questions over and over; however, it seems as though they could add a new component that would clarify the end stage time frame for their study, since the questions they're asking only highlight the dramatic difference between then and now. But what do I know? Maybe this survey is actually doing that, somehow.

Then. And now. Wow. Did I say the difference is dramatic? It's more than dramatic. It's breathtaking. Heart stopping. So, yes, this survey is actually doing that, somehow. For me, anyway.