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Alzheimer’s Disease: Would You Want to Know?

Suppose there is a test that can be done to determine the likelihood of you getting Alzheimer’s disease.

Would you want the test?

Should you know the results?

My grandmother suffered from Alzheimer’s disease. She passed away when I was 19, but she was no longer herself many years before she stopped breathing. Before the disease ate away at her brain, she was such a lovely woman. She baked the best pies, she had a grand sense of humor, and she seemed to have lots of friends. But after several years of the disease, she lost her spark. She just wasn’t the same woman.

It’s possible, maybe even likely,  that her road is the same road I’ll travel someday. If there is a test that can tell me (privately) that I will, I want to know so I can prepare for the trip. But on the other hand, if there’s a test that can tell me that I won’t, a huge weight could be lifted from my shoulders. Of course, it’s possible I could end up with some other kind of dementia or who knows what else, but suffering the indignities of Alzheimer’s is one of my greatest fears. If I could either confirm it or rule it out, I would call my doctor tomorrow and find out.

How about you?

Posted by Wendy at 1707 hrs
Culture

1. Sorry for the long post, but this will help…

   Though some are more genetically prone, I assume anyone can acquire Alzheimer’s.

   Dr. Paul Nussbaum is a licensed clinical neuropsychologist in Pennsylvania, and earned his Doctorate in clinical psychology from Univ-AZ in 1991. He is an adjunct Associate Professor in Neurological Surgery at the University of Pittsburgh School of Medicine: 20 years experience in the care of older persons suffering dementia and related disorders.

   New ideas about your brain
   •The human brain (like the animal brain) can generate new brain cells. This new brain cell development (neurogenesis) occurs in the hippocampus.
   •The human brain is now thought to have “neural plasticity” or be a system that is highly dynamic, constantly reorganizing and malleable. It is shaped by environmental input.
   •Our brains need exposure to environments that are enriched, complex and novel. Environments that are passive and rote do not help brain health; they hurt.
   •Exposure to enriched environments across your lifespan will lead to new brain cell development and increased cellular connections (“synaptic density”). Synaptic density or brain reserve may help to delay the onset of neurodegenerative diseases such as Alzheimer’s and related dementias.

   Nussbaum Dr. Paul D. “Your Brain Health.” ©2008. 
   Eons.com.  June 26, 2008.  http://www.eons.com/body

   Five domains of the Brain Health Lifestyle
   Socialization - Do not isolate or segregate as you get older
   Physical activity - EX: Walk 7,000 to 12,000 steps daily
   Mental stimulation - Keep learning, problem solving
   Spirituality - pray/meditate daily
   Nutrition - Don’t overeat, eat fish, antioxidants (wine), decrease processed foods and red meats, eat veggies

   Posted by .(JavaScript must be enabled to view this email address) on August 18, 2010 at 1959 hrs
   
   
   

2. This is such a difficult topic.
   My darling wife of almost forty years has Alzheimer’s history on both sides of her family and is, of course, very worried. So far so good, and I have great confidence that we will be able to fix this.
   The 8 years of Bush and the stem cell anti-science did not help. I will never, ever understand how my political party ended at odds with biotech - stupid from both an economic and humanitarian point of view.
   And, as long as we’re talking here, should I ever suffer from severe dementia, I hope I have the right to pull my own plug. I could not stand for my grandchildren to see me in that state not to mention the foolish waste of health care dollars. That said, I support the absolute right of anyone to hang on to life until the bitter end. Just don’t make me do so.

   Posted by Charlie Hillman on August 18, 2010 at 2103 hrs
   
   
   

3. Even if they can tell you yes, they can’t tell you when.

   Posted by .(JavaScript must be enabled to view this email address) on August 18, 2010 at 2112 hrs
   
   
   

4. There could be a benefit for life & estate planning purposes.  For example, whether or not to purchase long-term care insurance (in assisted living or nursing home facilities) or divesting assets to one’s spouse or family to qualify for Medicaid coverage (face it, that’s a very common strategy).
   I would guess that nowadays the majority of people who spend a long time in nursing homes before they die are there because of Alzheimer’s.  The mind dies long before the body does.  For people who die of natural causes or disease, the actual process of dying happens in a relatively short time.

   Posted by .(JavaScript must be enabled to view this email address) on August 18, 2010 at 2156 hrs
   
   
   

5. I would worry about the results getting into the wrong hands. But I just want to know if I have the gene. Rather, I want to know that I don’t have the gene. You have to plan for any kind of future anyway, but I just want to know that one little tidbit.

   Posted by .(JavaScript must be enabled to view this email address) on August 18, 2010 at 2224 hrs
   
   
   

6. Call me odd, but I would never think to have any such test performed on me.  I’ve got enough stress on my back as a family man and wage slave and am astounded that people would take a test that says they may have an issue a few decades down the road.

   Ditch the stress.  Let life come to you rather than trying to manage it 20 years into the future.  The stress you avoid now will give you a few more years on the back end.

   Yes, I’m strange.

   Posted by .(JavaScript must be enabled to view this email address) on August 18, 2010 at 2237 hrs
   
   
   

7. Good topic- no test for me, but a rock solid plan if diagnosed

   Were i to be diagnosed, I will slap on an Irish driving cap.pop a cuban cigar in my mouth and drive my car like Thelma and Louise off of the highest mountaintop I can find.(after I had a opportunity ti say my goodbye’s to friends, family and even those who (for no understandable reason )disagreed with me
   in print

   I have the highest respect for those who want to fight to the end with ALS or Alzheimer’s .

   I am not that guy.

   Posted by .(JavaScript must be enabled to view this email address) on August 19, 2010 at 1405 hrs
   
   
   

8. Personally, I would want to know.  With the continuous scientific breakthroughs, imagine if a drug is developed that can slow down, halt, or even reverse the effects of Alzheimer’s .  I’d rather have the opportunity to take that drug in the early stages rather than later in the progression of the disease when the medication has less of a chance to be effective.

   Posted by .(JavaScript must be enabled to view this email address) on August 19, 2010 at 1716 hrs
   
   
   

9. I thought these kind of tests were being done for research purposes, not the kind of thing you walk in and get from your doctor.  You participate in a study, you get tested, you never know what the results are.  The whole reason they do these tests is to find out whether they can identify the disease precursors.  If they can, then they can develop treatments that might prevent the disease.  If they can’t, well… it all adds up to nothing. 

   If a test can identify whether I’ll get Alzheimer’s, yes, I’d want to know the results of it.  Treatment or not.  If it’s an open question whether it can or can’t predict it, let it be left to the researchers.

   Posted by scott on August 20, 2010 at 1110 hrs
   
   
   

10. If there was a test that could tell you if you were going to get hit by a car tomorrow, would you want to take it and know for sure?  In the end, there are no certainties.  Increased chances and likelihoods, but not certainties.

    If you prepared your life as if each day/hour was your last, what would you do differently?

    BTW - my dad is one of fourteen kids.  His mom and six siblings have had dementia/alzheimers.  He is 76 and appears to have been spared, but that could all change tomorrow.

    Posted by .(JavaScript must be enabled to view this email address) on August 20, 2010 at 1228 hrs
    
    
    

11. In general, getting a medical test makes sense if the test results lead to a decision.

    In this case, it’s not clear what you’d do differently if you knew.  As for, “what if they develop a preventive treatment,” well, that would change the answer to the question.

    Posted by .(JavaScript must be enabled to view this email address) on August 20, 2010 at 1520 hrs
    
    
    

12. And like I said, my understanding of these tests was that they were doing research to even see if they could identify legit precursor conditions of the disease.  The only way they could develop early treatments for the disease is to first be able to detect its presence accurately.  And if they’re just at the “let’s see if we can identify it” phase, there’s nothing <i>to<> tell a patient/research subject.

    Posted by scott on August 20, 2010 at 1532 hrs
    
    
    

13. There is a study being conducted at the Wisconsin Alzheimer’s Institute in Madison that is trying to determine if there are any precursors to getting Alzheimer’s. It involves family members with the disease and their children. The gene they look for is APOE4… WIA is leading the nation in this type of research. There is also a lot of cutting edge research at the Medical College of Wisconsin too. I don’t think I’d want to know… Stress might be considered a potential cause…

    Posted by .(JavaScript must be enabled to view this email address) on August 20, 2010 at 1609 hrs
    
    
    

14. Case 1.  I enroll in a study where researchers find that I have the APOE4 gene.  It is not known whether this reliably predicts whether I get Alzheimer’s in the future.  And there is no treatment or course of action to take even if it did. 

    Response: I do not need to know about the presence of the APOE4 gene.

    Case 2.  I enroll in a study where researchers find that I have the APOE4 gene.  The presence of this gene reliably predicts whether I get Alzheimer’s in the future.  There is, however, no approved treatments available until I am symptomatic.

    Response: I would want to know.  At least I could be on the lookout for early symptoms and make sure that I get timely treatment when that day comes.  I could even get in on experimental early treatments.  It also might help me make different life choices knowing that I will not have a healthy old age.

    Case 3.  Studies have been done showing that the APOE4 is a precursor to Alzheimer’s.  My doctor finds that I have it.  There are early treatments available which might help slow or even prevent the start of symptoms.

    Response: Obviously I would want to know.

    As far as I understand, we are in case 1 territory.

    Posted by scott on August 20, 2010 at 1619 hrs
    
    
    

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