Research report

The doctor who runs the Alz center support group offered to fill us in on some information from his latest trip to the American Academy of Neurology in Toronto. He started group a half-hour early for the presentation. It is clear during support group meetings that he feels frustrated about the status of research on Alzheimer’s disease. Tonight that became even more clear. I should credit him since I am going to write about his presentation: he is Leopold Liss. If I have the facts straight, he was Ohio State’s first cognitive disorders clinic director in the 1970s. He is very dedicated to patients with dementia and their families. He is the medical director of the Alz center.

He gave us a primer on the basics of Alzheimer’s, and the plaques and tangles in the brain that characterize the disease. Even now, 100 years after the disease’s identification, researchers don’t know whether the plaques and tangles cause the disease or are instead consequences of the disease. “We still need to have answers to some very basic questions,” he said. Also going on in the Alzheimer brain is a loss of function of synapses that transmit signals to and from nerve cells. This is why sometimes, a very sick patient can suddenly retrieve information that was thought to be lost forever. Somehow, the signals get through from time to time.

He also listed the most common medications used to treat Alzheimer’s – though “treat” might be an optimistic word. They are believed to slow the progression of the disease. The oldest drug that is still used, Aricept, which was approved in 1997, inhibits the activity of an enzyme that breaks down neurotransmitters in the brain. But it is not enough to stop the disease in its tracks. A more recent drug, Namenda, acts on a different part of the brain. It was approved in 2003. The lack of more drugs for Alzheimer’s is particularly disheartening for Dr. Liss. “It’s frustrating, because we don’t have anything new. And the problem is, where are we really going right now?” he said.

He read excerpts of a few news releases from the neurology meeting, including one that had some promise. Scientists used intravenous immunoglobulin, a blood product injected to treat certain immune deficiencies and autoimmune and inflammatory conditions, in a small number of Alzheimer’s patients and saw minor improvements in brain anatomy and cognitive function as a result, compared to controls. That gives rise to the idea that inflammation in the brain is a significant contributor to dementia, something that many researchers think is the case. These researchers now are going to study the experimental treatment on a much larger sample of patients.

Reputable researchers also have performed plenty of research seeking to show how to prevent Alzheimer’s, and Dr. Liss noted that several news releases from the meeting covered recent studies in this area. But he also read from a recent National Institutes of Health announcement about an independent panel that found that currently recommended interventions for prevention aren’t really backed by adequate evidence. I noticed this news the day it came out about a week ago. For people like me, children of Alzheimer’s patients, the idea of prevention is, as you might imagine, very important. We can’t help thinking we are at higher risk for the disease even though that is not necessarily firmly established, either. This is my main motivation for exercise: maintaining blood flow to my brain. The NIH statement said that most of the most typically recommended behaviors for possible prevention – exercise, healthy diet, pursuit of cardiovascular health, an active brain – are not harmful and have other benefits, so all is not lost. The panel closed its statement by recommending that the United States expand efforts relating to caregiver issues and invest more in research about how to prevent and cure Alzheimer’s.

In summary, Dr. Liss said, “We have very little to offer and are grasping at straws.”

I did not stay for the support group meeting that followed. I had developed a headache. But I did slip back into the program area to see if I could squeeze in a quick visit with Mom. I couldn’t find her anywhere. It was quiet in this usually bustling area, with a group of about a dozen residents around a table listening to a story and a few single residents scattered about on couches or chairs. I saw Mr. R on a distant couch, by himself. A staff member told me Mom was in bed. It was 7 p.m. “After dinner, she likes to go to her room,” he said. I didn’t want to disturb her, so I left. When I told Patrick about that, he said it “sounds like heaven.” I thought so, too – spend the day in a busy social setting holding hands with a boyfriend, have three square meals, play some games, do an art project, listen to music, dance and sing, maybe go on a field trip. Fill up on dinner and go straight to bed. Wake up the next day and do it all again.

3 comments so far

  1. Gemma McLuckie on

    Reading this, I’m thinking about my own dad. He’s struggling with mental issues and his docs are struggling, too. They have determined he doesn’t have Alzheimer’s. Now it’s Aricept and more MRIs.

  2. momsbrain on

    Hi, Gemma. It’s interesting that he is using Aricept even without the Alzheimer’s diagnosis. I guess those neurotransmitters can use the boost even with other cognitive impairment. It must be frustrating to not be able to get to a diagnosis.

  3. […] This post was mentioned on Twitter by mark grip. mark grip said: Research report « A blog inspired by my Mom's Brain: It is clear during support group meetings that he feels frust… […]

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