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.