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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Friday, June 21, 2013

Do I Really Want to Know?

Kansas City MO
I was visiting Elsie, a friend with moderate dementia, the other day.  I was curious to know whether she had Alzheimer’s and, if so, how she was dealing with it.  Elsie had been very important in my life for almost twenty years before I moved to a different faith community about ten years ago, and I hadn’t seen her in awhile.  I’d heard reports that she’d become forgetful; she repeats things she’d said a few minutes ago; she sometimes didn’t recognize people who should have been familiar to her.  She remembered me because our relationship went back thirty years.  (Alzheimer’s affects short-term memory much more than it does long-term memory.) 

Elsie greeted me warmly.   She’d always been an energetic, gracious and humble presence, and that hadn’t changed at all.  It was almost as if we were continuing our relationship from where we left off so many years ago.  Elsie is certainly not in denial about her memory loss; she refers to it easily, with good humor and without self-pity.  In the context of talking about her memory troubles, I told her that I had some memory problems, too, and that I had a diagnosis of Alzheimer’s.  (I have to admit I was trying to manipulate her a little to see if she’d mention “Alzheimer’s” in reference to herself.)  Perhaps Elsie knew what I was getting at, for she interrupted me and said, “Oh, I don’t think it’s that important to know the diagnosis, do you?”  (For Elsie the “do you?” at the end of a sentence is not so much a question as a restatement of her belief.)

What an interesting response!  Elsie has no trouble acknowledging her impairment, but doesn’t want her diagnosis pinned down.  Does she suspect it’s Alzheimer’s and doesn’t want to think about the implications?  Does she want to avoid a label that would spread through the community and stereotype her?  I interpreted her rhetorical “Do you?” as a desire not to continue that discussion, at least not then.

That conversation came back to mind this afternoon.  I’m in Kansas City and gave a talk at a medical conference about my Alzheimer’s.  After the conference wrapped up, I met with Ron, a friend from Minnesota I hadn’t seen in thirty years.  We spent a couple of hours reminiscing and talking theology.  As he dropped me off at the hotel, Ron mentioned that he, too, had been bothered by his increasing forgetfulness and wonders whether he ought to get it checked out.

He was implicitly asking the question Elsie didn’t want to ask: Was there any reason to get tested to find out if he had Alzheimer’s? 

My response is equivocal.  The one reason that argues strongly for getting checked out is that only 80% of people with dementia have Alzheimer’s.  A primary purpose of an early neurological exam is to rule out the causes of the other 20%, some of which are treatable.  Parkinson’s disease, for instance, is at least partially treatable.  Small strokes can also mimic Alzheimer’s, and in that case aggressive treatment of cardiovascular disease might prevent progression.

Personally, I wanted to know right away.  My impairment—not only in memory but also in computation and some degree of confusion—had become obvious to me.  If there was an explanation, I wanted to pin it down rather than fantasize or worry that I was going nuts. 

Other reasons for early testing I’ve thought of—the need to do long-term planning, wanting to know before others begin to wonder what’s going on, wanting to make sure I’m not a danger to self or others—seem less important to me than they originally did.

I was aware of my symptoms well before anyone else noticed.  And I doubt I’m unique.  It seems to me that anyone who is interested and open to knowing about Alzheimer’s and who is paying attention to his cognitive state is going to notice symptoms very early.  Ron’s already worried about his memory.  If other symptoms develop, he’ll undoubtedly notice early and get tested.

At one point, I thought an early diagnosis was important to making future plans.  Financial decisions for Medicaid, for instance, must be made five years before application.  One should certainly not wait too long before making plans, but I’ve been having symptoms for over three years, and it seems there will still be plenty of time before I need nursing home care. 

I was also originally concerned because I wanted an early diagnosis that I could share with friends before my symptoms became noticeable, before they were reduced to whispering behind my back.  I wanted to be able to ask a professional (my neurologist) help determine whether I could safely drive.  But it’s now pretty clear that I’ve been aware of symptoms long before others noticed and that my concern about my own ability to drive is higher than the state’s or the insurance companies’. 

Elsie is almost ninety.  She’s well aware of her impairment.  I agree with her that there’s no reason she needs to use the A-word.

Ron’s only symptoms are memory problems.  If they are due to Alzheimer’s, he’d be very early in the disease and there would be little objective reason to get tested while his symptoms remain limited.  It would be a while before others noticed or he became a danger to anyone.  In my own case, I just wanted to know what was going on.  Ron’s enough like me that he’ll probably have an early evaluation, too.  But if another person wasn’t particularly interested, I’d certainly not push her to be evaluated until symptoms became far more obvious than Ron’s.


  1. It will become VERY important, when the day comes that they have a new medicine that stops AD in its tracks. Then you would want to know so you could recover. =) I believe there will be some major breakthroughs in the next 10 years, in cancer, dementia, etc.

    1. The researchers are certainly following some important leads and have a few drugs in early trials with some theoretic chance of working. The researchers I’ve talked to, however, seem to believe that even these drugs won’t have much effect on people who already have significant. More likely, the medications might impact very early disease, a decade or more before the first symptoms appear.

  2. I am still amazed at the things you are perceiving as new thoughts about this illness and it's effect on you. I have commented before on your blog and as someone who was diagnosed in 2002 I am still in relatively good shape BECAUSE of early intervention. My personal opinion; information is knowledge. In more than one entry you seem to fault any use of medication, which you claim does not work, and now you push getting the early knowledge of the condition to the back burner. Why? YOU got an informed opinion and YOU made a choice of trying medication or not. Yet, I get the feeling you pass judgment on those who would process those same choices. Sir I do hope I am perceiving your comments incorrectly, but, I get very discouraged for others reading your blog, by your comments. Your insightful writing is good, but, three years into this journey is not far enough to plant some of the firm markers you do. It is hard for me to find and use my words effectively, which you still do much better than I. Having said that, the gamut of emotions and changes you STILL have to go through will change a lot of what you think now. Most of the challenges you have blogged about; I have EXPERIENCED for over ten years. Early diagnosis is the ONLY reason I am doing as well as I am. I tried the cocktail approach using Aricept & Namenda. My cognitive abilities have greatly improved. Had I just said I don't want to know; it is very likely I would be much more cognitively dysfunctional...I know I was loosing it....I know I improved. Each day is a struggle yes, but, it could be and would be worse had I done nothing. Even doctors, through practice, are not sure why medicine works for some and not for others OR HOW IT MAY WORK FOR A GIVEN PATIENT.
    For me the best thing about each day is, I have the illness - it does NOT have me.

    1. Larry sr:
      Thank you very much for commenting. One of my fears in writing this blog is that I will be perceived as pushing my own experiences and opinions as THE experiences that all Alzheimer's patients have or that the choices I have made are those that everyone should make. (I'm afraid it is my style of writing that that misinterpretation is easy to make.) I have tried to say that other people will for very good reasons make other choices.
      It may sound like it, but I am not trying to write as an expert about what anyone else should do. I don't imagine that my ideas are new or unique. I'm trying to write about my internal experience with these difficult issues as I face them. However I may come across, I do not (trust me here) feel judgmental about how others make decisions. There are, for instance, going to be people like Ron who want to know early what their diagnosis is and people like Elsie who don't. (For the record, I did want to know my diagnosis as early as possible.) Similarly there are going to be people who want to try every possible treatment and people like me who want to restrict ourselves to what is well documented. (In this case my choice not to try everything is probably less rational than the choice to try lots of things; I'm not pushing my choice but trying to to share how I came to my decision.
      I realize I am VERY early in this disease and have not experienced many symptoms that others have experienced. I am very aware (and try to mention it occasionally) that my thoughts and opinions now may change dramatically as I go through various stages. This is just me, just now. I write because I hope it may help other people think through their own situation, but I want them to find their own best choices and conclusion. I certainly don't want to push them to my conclusions and choices.
      Again, I am grateful for the chance to (hopefully) clarify what I'm trying to do. Thank you for giving me the opportunity by writing.

  3. My understanding is that a lot of the medications, if they are effective for an individual, are most effective early in the disease. One option is to get tested but ask the doctor not to reveal their diagnosis, but to recommend the appropriate treatment. Like you said, if there is something like a B vitamin deficiency it's very treatable, whereas if it's AD the options are different - but access to the best options is important in my opinion.

  4. I've often said that I wait for the day that some of my most loved patients from the unit are sitting around when I come to visit, and one turns to me and says, "I had the strangest dream........" Before she packs her bags to go home.

    It could happen. I read that there is a research study right now requesting a thousand people for a study. They announced a few days ago that the millionth baby born HIV negative from an HIV postive Mother was born. They are transplanting islet cells in pancreases. No more diabetes.

    I had neighbors back in the 70s that had a little two year old boy come down with Leukemia. They took him to Denver Children's hospital. And as hard as everyone fought, he died rather quickly. Three years later, their second baby came down with the same Leukemia. They were understandably devastated, took their baby to Denver Children's hospital. While in tears with the Doctors, the doctor said, "Oh its curable now!" The baby is in his 40s with children of his own. That's how fast medicine can work.

    We just have to keep our fingers crossed and wait. Whether it will benefit us, we don't know. but its going to benefit somebody, and within years, maybe ten years or more. But someday dementia is going to be treatable.

  5. Thank you again David for a wonderful post. It has been very helpful for me to read your blog. I recently disclosed to a large gathering of people at a conference and everyone was very supportive. I think I sparked some changes in attitudes and caused others to take action. I continue to observe my symptoms with curiosity. I get confused about little things and the other day I experienced a short term memory blank. I had just called some one to tell them I was on my way to pick them up to take them to church and then it completely left my mind. I recalled it a short time later and was able to backtrack to pick her up but it was weird to have it happen. I am in a study to assess sleep apnea and memory and will have my next cognitive testing in August. I am hopeful as Lee An stated that a solution is just around the corner.

    1. Thanks for your sharing, jmojo.
      I, too, think it's helpful to disclose status, not only because it helps to bring the disease out of the closest and reduce its stigma but also because it helps us get support, be much more cognizant of our impairment (which, I hope, will make the later, more difficult stages of the disease easier). It's a very personal decision, of course, that will differ from person-to-person, but I'm always grateful when someone feels comfortable enough to disclose.
      Thanks again.

    2. Anonymous6/27/2013

      Hello David (my mom is jmojo)
      do you have advice for children who are.... (skeptical is too strong a word)

      i think the fear and denial makes me huff&puff when she says she forgot something. everyone forgets things or gets sidetracked or loses things.

      i guess i need to read more of your blog :)

    3. I can only think that assessing early AD is harder for the family than for the patient. I still don't have much that shows up to other people (Ok, my wife believes me now). But I KNOW how impaired I am. Almost every example I've mentioned on the blog has had someone write in a comment or private email to me that that same thing has happened to them and they don't think they have AD. And there are quite obviously people who are quite oblivious to the impairment and don't even believe it when others point out the obvious.
      On the other hand, my father kept thinking he had AD (for twenty years) because he had memory problems typical of older, non-demented people.
      So, how do you know? I've not researched this, but I would think that the only way to assess early dementia is to have a formal evaluation. The cognitive assessment and memory tests that are routinely given can pick up fairly subtle signs that are nevertheless indicative of AD. (On the other hand, some of the screening tests that non-specialists use are not sensitive for dementia ... and I say that as a former doc who didn't know about the more sensitive tests.)
      So, if your mother's doctor has given her a diagnosis and she's willing to have you talk with him/her, go in and talk. If there is no official diagnosis, see an expert who can do the testing. On the medical side, a neurologist can help; I'm sure there are people on the social work, psychology side, too, but I don't know how to find them.
      In my opinion, it's important that you sort it out. If she has the disease, it's important to start early talking about it and planning before she can no longer participate fully in the conversations. If not, then it would be good to find out what is going on.

  6. I am 57 years old. I don’t have dementia. I do have the APO-e 4/4 gene, which means I’m genetically predisposed (92% likely) to have Alzheimer’s by age 72. Researchers have found an increased risk for late-onset Alzheimer's in people who inherit two copies of this particular variation of a gene called apolipoprotein E (APOE 4)

    My husband and I both asked our doctor for genetic testing. My husband’s mother and grandfather both had Alzheimer’s. My mother and grandmother both had Alzheimer’s. While I never worried that I would be the one to get Alzheimer’s, my husband worried constantly. I wanted us to take the test to ease his worries. I thought worrying about getting Alzheimer’s was worse than having it. I’m so happy I’m the one with the gene (not my husband) and found out at age 54. Because I know I’m predisposed, I’m doing everything I can to prevent developing Alzheimer’s. I radically changed my diet, stopped drinking alcohol (except for red wine) and embarked on memory improvement programs and embraced livelong learning. I love learning and this is my excuse to learn to draw, learn Spanish, learn to tango and cha cha etc. etc. etc. Life is one big learning adventure.

    I know this doesn’t mean I won’t get Alzheimer’s. But having the gene doesn’t mean I will develop Alzheimer’s. I might be in that 8% and I’m doing all I can to increase those odds. I’m embracing life and living life on purpose. I’ve been looking for role models and you’re an excellent role model for me.

    This entry really hit me. When I found out about my 4/4 status, I immediately wrote my two sisters and my brother. If I have the APOe 4/4, it is very possible they do too. I also wrote three of my cousins. My two sisters would not even talk about the subject. Not that that was much of a surprise to me. My older sister refuses to get mammograms because, “If I get a mammogram, they’ll tell me I have breast cancer.” I’ve tried to explain that that is the whole point, to find out and treat breast cancer before it kills her. But I was surprised that my brother and cousins all said they don’t want to know (and seem to imply that I’m very strange for wanting to know.)

    To me it’s like living in Florida and not wanting to listen to weather forecasts because it would be too scary to know there is a hurricane on the way. My siblings and cousins all know they are at risk because of our genetics, but would rather not know if there is a hurricane on the way. They would rather be blindsided.

    I can’t prevent hurricanes, I can only prepare for them. In this case, there is much I can do to prevent Alzheimer’s by changing my lifestyle. But I also need to prepare. If I develop Alzheimer’s, I will deal with it. But I can’t deal with it if I’m afraid to be diagnosed. At this point I’m looking for reliable, inexpensive ways to check for the onset of Alzheimer’s. Knowledge is power.

    Thank you for your blog. I enjoy it immensely.

    1. Thank you for your comment, which adds richness to my post.
      For those readers who are not familiar with the eAPO-4 gene, it is a risk factor for normal AD (not the rare autosomal dominant for). Having one gene (as I do) about doubles the chances of getting AD. I both genes are positive, the chances of getting AD around 80% (according to the researcher I've work with).

    2. One way to get tested is to see about a clinical trial at
      Type in your zip code to see if there are any near you. Some trials are looking for very mildly affected people and controls and even folks that are just concerned because of family history. I am 63 and have been in a longitudinal study since I was 50 because of my family HX. In the last year I began to show subtle changes when tested. The memory study that is investigating sleep Apnea and memory loss is another option. I am awaiting the results of my APOE test and will not be surprised if is positive. I like your analogy of preparing for a hurricane. I hope you will keep posting!


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