Tag Archives: Emory Alzheimer’s Reasearch Center

When An Alzheimer’s Study Tanks

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We got the news last week that the Ralph’s Merck study is shutting down. I got a text from the nurse at Emory to say Ralph should stop taking his blue pill but to come in for the appointment already scheduled for this week—and to bring all unused pills with us.

I was a bit startled. Not sure how I should feel but surprisingly upset. Ralph has been holding steady for so long, and I assumed the little blue pill was at least a large part of the reason. But he has not enjoyed the study. His visits, at least two hours being prodded and tested plus an hour each way to and from, always leave him feeling tuckered out and slightly woozy.

I liked Ralph being in the study. Self-centeredly, I enjoyed have a chance to talk (i.e. whine about Ralph) to the social worker whom I like as a person. Despite Ralph’s complaints, having an excuse to take him for an outing always seems like a positive thing, and gets harder and harder. And I liked that he was being checked regularly, that someone would catch any problem sooner than later.

So many studies are going on with Alzheimer’s, and there is always a new breakthrough on the horizon that seems to fizzle. The reality is that I didn’t expect this study to make a difference for Ralph but I was thinking about any children/grandchildren who may have inherited the gene. I figure whatever happens with Ralph is going to happen at this point and we’ll deal with it.

The nurse and I agreed that Ralph is probably not likely to participate in other studies. For one thing, his inability to have an MRI locks him out of most.

What saddens me, I guess, is the sense that another door is closing.

Ralph “Passes” the Test to Participate in Alzheimer’s Study

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The research nurse at Emory’s Brain Center called a week ago asking if we—Ralph and I because caregivers play an active role—would be interested in participating in a research study.  The nurse had already looked at Ralph’s chart and said she thought he’d be a good fit.

The study is  being conducted by the pharmaceutical company Merck  on a possible treatment to slow the progression of Alzheimer’s. As the Merck brochure says, “This study is designed to test the idea that inhibiting a specific enzyme, BACE, may slow or stop the progression of Alzheimer’s disease. The drug in this study, MK-8931, is a BACE inhibitor, which means it helps stop the BACE enzyme from producing amyloid beta peptides. Amyloid plaque deposits in the brain may be the underlying cause of Alzheimer’s disease. By inhibiting the actions of the BACE enzyme, it may in turn help stop the formation of those amyloid plaque deposits.”

In other words, the study hopes to find a way to slow down the build up of the plaque that is assumed to cause Alzheimer’s and that is evident in Ralph’s brain according to the spinal tap his doctor administered several years ago.

I glanced at Ralph, who was on the couch having his afternoon nap, and said yes, I thought we might like to participate. I was actually quite excited. In the past Ralph has not qualified for studies and drug trials like this because of his MRI problem—the bb pellet that has been lodged in his tongue since a shooting accident when he was eight-years-old not only uncomfortably heats up during the procedure but distorts results—but this particular study has dropped the MRI requirement.

The nurse immediately emailed the study’s descriptions and consent forms, which I read and explained to Ralph. And explained again.

“I hate taking pills.”/“You won’t even notice the extra pill.”

“How often will I have to go see the doctor?”/“Every other month.”

“What if I’m stuck with the placebo? It’ll be a waste of time?”/“But the study will give you the real pill afterwards, and in any case, the study will benefit others, like your kids who are at genetic risk.”

“Ok, it sounds good. But I hate taking pills.” The familiar loop repeated itself over and over, and each time he ended up agreeing to participate, if with tepid enthusiasm.

Three days later we were at Emory. (Evidently the study, which has already been going for a year or two, needed a few extra last-minute entries and the deadline got pushed up so we were a rush job.)

Ralph took two memory/cognitive tests which have qualified him although “passing the test” is not the term I’d use exactly, at least not for the second test in which the cut off number had to do with having too much memory. Ralph evidently “passed” with flying colors because his memory score was very low. I have to say when the nurse whispered the news to me, my heart sank a little.

Now we are waiting for Merck to look at the scores before scheduling some physical tests. If Ralph makes it through through those, he will begin taking the extra pill with his Namenda and Donepezil daily. There is a one-third chance or receiving a placebo, a one-third chance of receiving a lowish dosage of the medication, and a one-third chance of receiving a higher dosage. I will be expected to keep track of his progress in some form that has not yet been clarified—I warned the research nurse that I may be travelling some in January after my daughter gives birth, but she said that would not be a problem.

Once Ralph starts the pill, we will meet every two months with medical personnel, including his neurologist, a dermatologist and the research nurse, for the next two years. When the two years are up, if he’s been taking a placebo, Ralph will then receive the higher dosage of the actual medication; otherwise he will continue on the dosage he started with.

I see no downside (except, if I am honest, the extra effort required on my part) and plenty of pluses. Because we are entering the study late, there is plenty of knowledge about side effects—minor and rare. The frequent visits to Emory are a great excuse to get Ralph out of the house and into the world. Plus he will be receiving more detailed health check ups on a more frequent basis. We will no doubt have a better sense of where he is on the continuum than we do now.

And, although he says he doesn’t care, the idea of doing something useful for others, of being part of a cause larger than himself, will give him a sense of purpose; even at Emory the other day I saw the shift from anxiety (which may have caused his low memory score) to energetic good cheer as he interacted with staff.

And if the medication makes a noticeable difference in Ralph’s condition, well that would be great too. Fingers crossed.

Alzheimer’s Cost-to Women-A New Study

I received the following press release from Emory University  this week:

Study finds women bear heavier economic burden for Alzheimer’s care

ATLANTA – An Emory study published today in the journal Women’s Health Issues finds women bear six times the cost of Alzheimer’s disease (AD) care, per capita, that men do. The authors say the greater cost burden is largely due to the informal care women deliver to family members with AD.

Alzheimer’s disease is a progressive brain disorder that slowly destroys memory and thinking skills and is ultimately fatal. It is also one of the most expensive diseases in our country—more costly than heart disease or cancer.

Authors Zhou Yang, PhD, assistant professor in Emory’s Rollins School of Public Health, and Allan Levey, MD, chair of the Department of Neurology and director of the Emory Alzheimer’s Disease Research Center, used a lifetime perspective to calculate AD costs and looked at three factors: the probability of developing the disease, the disease’s duration, and the formal and informal care needed for the AD patient.

“There is strong evidence that women face higher risks of being affected by Alzheimer’s as either patients or informal caregivers,” says Yang. “It is critical to develop public policy interventions aimed at curing or slowing the progress of the disease to benefit the health and economic welfare of women everywhere.”

Yang and Levey used 2000-2010 data from the nationally representative Medicare Current Beneficiary Survey to calculate costs for clinical care paid by Medicare, long-term-care costs paid by Medicaid, out-of-pocket costs for care at home, and the costs of informal, uncompensated costs.

They found women AD patients have 16% higher Medicare costs and 70% higher Medicaid costs than male patients over their lifetime. And the greatest gender difference was in the cost of uncompensated informal care, where a female family member of a male AD patient will bear a burden six times greater than a male family member of a female AD patient.

Yang and Levey initiated the study in coordination with WomenAgainstAlzheimer’s, an advocacy group committed to stopping Alzheimer’s by 2020.

“This is the first study of its kind to document the disparate economic impact of Alzheimer’s on Women as patients and caregivers and the concomitant burden on our public health systems,” said Jill Lesser, President, WomenAgainstAlzheimer’s. “It illustrates the urgent need to reform reimbursement policies for Medicare, Medicaid and long-term care and alleviate the public and private impact of this tragic disease that burdens families for decades.”

I have nothing to add except “Duh?”

No, that’s not fair. I am not surprised that a study proves that women are impacted more often and that their financial costs are heavier. BUT I also sometimes worry that men who care for their wives get short shrift in discussions of Alzheimer’s. And I don’t want to buy into another case of women as victims mentality–mainly because feeling like a victim is less useful than feeling in control.

Beside, in support groups, I am always amazed at the devotion and patience of the men attending. They are less comfortable with the talky format but they are also trying so damn hard and have often given up so much.

So, even though this information rings familiar bells in my brain, there is plenty of pain to go around and alleviate….