May 18, 2010

The Dimebon Experience -- Patrice's View

I can’t imagine how devastated many patients and caregivers will feel if they discontinue the medicine and a rapid decline in functioning becomes apparent, knowing that there is something available that will help.....

Patrice wrote,

I am a caregiver for my father who has been participating in Phase III of the Dimebon trial; he was on Aricept when he started this trial.

He was in the 3 month 50/50 cohort; starting the real drug in October 2009.

Although it took approximately a month, I started observing notable changes.

Prior to starting the drug, my father would become very quick to anger & often was socially inappropriate dominating conversations with off topic remarks. He would be absent minded around the house, leave water running in a sink, forget to close his garage doors at night & forget appointments.

I could tell him he had a Dr.’s appointment in the morning & in the afternoon when it was time to go, he would have forgotten about the appointment. He had little reasoning abilities and often showed poor judgment. Learning new tasks was especially difficult. He had some insomnia issues at night.

The first thing I observed was that his mood stabilized with no outbursts of anger since December.

He can still get frustrated learning new tasks but his recall of important information, for example, remembering to pay his estimated taxes has become quite astonishing.

In the past, if he got mail and I would ask him what he got in the mail that day, he would always say he couldn’t remember. Now, he is usually able to recall at least part of the mail; especially the important parts.

He is more socially engaged and showing more interests in others conversations. He is also more ambitious and interested in trying new activities.

He is now reading the newspaper daily.

He also just mentioned interest in renting movies, something that he would have never expressed interest in doing a year ago.

Last year I asked him if he was going to plant a garden and he had no interest. This year, without encouragement, he planted his own small garden.

His insomnia issues are also resolved.

My biggest concern is that when this medication is stopped that he will rapidly decline.

He has tolerated this medicine so well that I find this devastating that he might lose the ground that he has gained. More importantly than anything, I have told myself repeatedly over the past 6 months, if this drug kept him from progressing any further, I would be so grateful.

Contractually, we were told he would be given this medicine in the extension trial until the commercialization of the product is stopped or the drug is FDA approved.

I wonder too if our experience was positive because we started treatment early in the disease process?

Knowing my father’s family history for Alzheimer’s and being a Nurse, I have been as proactive as possible in managing this disease, believing firmly that nothing is going to be very effective if not managed early in the disease process.

I fear that decisions are being made based on very hard to interpret and subjective data. I just don’t find the MMSE a very reliable indicator of my Dad’s cognitive functioning.

For example, depending on who gives the MMSE, he scores can wildly vary. He has been as low as 16 and as high as 24.

Some test administrators are more cheerleaders than others. For example, on one test when asked to spell the word WORLD backwards, he replied he couldn’t spell it forward. He was given a zero. On a subsequent test, the test administrator said “come on, just give me two or three letters even if they’re wrong,” and ended up with 4 points.

As the caregiver, I was only asked vague questions about how he was doing and usually with him in the room which made it very difficult to expand upon my observations. Had I been given a more specific tool to evaluate his functioning, I think that it would have shown more measurable improvement at least from the caregiver perspective.

I realize clinical trials are very expensive, but I hope those that have chosen to stay in the extension trial would be allowed to stay on the meds until a final rendering is reached on the efficacy of Dimebon.

I imagine most patients and caregivers would gladly consent to less monitoring to drive down the cost.

I can’t imagine how devastated many patients and caregivers will feel if they discontinue the medicine and a rapid decline in functioning becomes apparent, knowing that there is something available that will help.

Editor Note: these are the opinions of an Alzheimer's caregiver that was enrolled in a Dimebon clinical trial. They are not employed by or affiliated with the Alzheimer's Reading Room. Name withheld.

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,400 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

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