Saturday, February 11, 2017

Don’t Give Up Hope

Dementia diseases are a terrible thing. They slowly rob an individual of his or her dignity and memories until there is nothing left but a shell incapable of the most rudimentary task. The number of dementia cases is growing fast--to the point where dementia diseases will be the pandemic of our lifetime. My wife was diagnosed with dementia at the age of 57. The disease is not just for older people. We have been fighting her decline for over a year. At first, we believed her life would be short because the onset was so early. That is apparently not true because she is still here. We have taken extraordinary steps to slow her decline. If she survives, she will be one of the first to do so. Here is my advice to anyone that might have a problem or to anyone who knows of someone with a problem.

1. Early diagnosis is important. That means someone must recognize the disease in its infancy. It is also important to note that the disease has probably been progressing for ten years before the first symptoms appear. The first symptoms will likely not be recognized as such by the individual with the disease; however, others who are close can tell. The first sign is extreme frustration in the patient. Complex tasks that were once simple become difficult to impossible and the patient’s reaction will likely be one of many tears, self-loathing, and possibly even self-physical attacks. “Why am I so stupid?” is a common response. The person with dementia still remembers how he or she used to function and does not understand the reason tasks can no longer be accomplished. This will especially be a problem for working people.

2. There are three drugs that can extend the period of lucidity but none of them can slow the pace of the disease. These are Razadyne, Aricept, and Exelon—all work the same in the brain. Namenda can also help, although behavior changes attributed to it are far more difficult to detect. There are also many over the counter supplements that are claimed to help, but, in my opinion, they have little effect. My wife takes Razadyne and Namenda. Without the Razadyne, she exists in a brain fog of confusion. With it, she is mostly herself.

3. Dementia has no cure; however, there are some promising studies. The most important at this time is testing a drug called aducanumab (Biogen Corporation). Potential inclusion in a study is where early diagnosis becomes critical. I was able to get my wife enrolled in the EMERGE study, but only because she was not too far gone. We have watched with tears as others have been rejected. Studies are the dementia patient’s last hope. It is heartbreaking to be rejected because, without hope, the disease is a death sentence.

4. Aducanumab is a “monoclonal antibody”, a drug based on the antibodies of older individuals who did NOT develop Alzheimer’s. The drug appears to work by attaching itself to amyloid plaques in the brain, and gradually helping to remove the plaques. After a year, some patients in the phase 2 studies were 100% clear of amyloid plaques. The dementia in those patients also was slowed 80% over those on placebo. The key word here is slowed. No one is claiming they have a cure for any of the dementia diseases.

5. There is hope. There are two improperly “cut” or “folded” proteins in brains of dementia patients—amyloid and tau. The amyloid plaques kill brain cells from outside the cells and the tau kills brain cells from within the cells. The two seem to be connected, such that as amyloid accumulates, tau begins to spread. Even healthy brains have both amyloid and tau—everything is a matter of degree. What is known is that getting rid of amyloid plaques is not the whole answer, but only a part of it. Biogen is currently working on a drug to solve the tau problem. If they come up with something, then there is a potential cure on the horizon. We remain hopeful, and have already signed up for a two-year follow-on study that might include such a drug, if it becomes available in the next 1.5 years.

My point in posting this blog is two-fold. First, pay attention to those close to you. Their behavior might be the only clue you get to help them seek an early diagnosis. It’s easy to put the small things off or attribute them to “natural” aging. Look for the tears and frustration. Those behaviors are not the norm for normal aging processes. Second, research the latest studies. Your best first stop should be the “Alzheimer’s Weekly”, an online magazine distributed by the Alzheimer’s Association.

I hope this helps.

James L. Hatch 


Tina Donahue said...

My best wishes to your wife and you, James. What a terrible disease. We have to find a cure and prevention.

James L. Hatch said...

Thanks for your good wishes, Tina. I believe Meredith is responding to the drug (I don't think she is on the placebo). She has had three infusions -- the fourth will be on 28 Feb. If she keeps on the course she is on now, she could survive much longer than we thought.

Fiona McGier said...

My aunt was on Namenda, but when Mom was diagnosed, the doctor's choice was Aricept. Both of them were supposed to slow things down, but as you say, it's usually so far gone by the time it's recognized for what it is, that there is little time to change the progression of this terrible disease that steals your loved one by inches.

You both have my sympathy.

James L. Hatch said...

Hi Fiona. I'm so very sorry you had to go through this too. We do not know if Meredith is on a placebo or aducanumab, but I believe in my heart she is on the drug. Sometimes I believe she is getting better, and some days I fear she is getting worse. We are taking it one day at a time. Still, we have hope. I know the medical community is doing everything they can to find a cure for Alzheimer's, but we don't know if they will come to the rescue in time for her. For now, we are getting her affairs in order, hoping for the best but preparing for the worst.