Yes, Get Yourself Tested

Washington DC

Last Friday I visited the Montgomery Hospice in nearby Maryland to speak to a group of fifty staff and volunteers who work with patients with Alzheimer’s disease or some other dementia.  For twenty minutes I described my history, my equanimity (so far) in the face of the disease, and my paradoxical joy in the call I’ve been given around Alzheimer’s.

I was surprised (again) by the energy and intensity of the questions.  In a past career of public speaking, I’ve presented about poverty, or American politics and economics, or matters of faith.  Usually the questions go on for about ten minutes and then peter out.  But this past Friday, the questions were still coming, some with considerable intensity when after a full hour and a half together, time ran out.  Something similar has happened in every such conversation so far.

A most common question is some version of “I may be having symptoms; should I get tested for cognitive impairment?”  Most of the time the underlying question is probably, “Do I really want to know?”  Alzheimer’s disease seems so frightening and there’s no treatment, anyway, so what’s the use of dealing with it before I have to?

I’m beginning to believe strongly that, if you’re having symptoms (other than a mild slowing in your thinking or some difficulty in remembering names and faces, which may be normal), it’s important to get tested and find out whether you have some cognitive impairment … whether you want to or not. 

The most important reason is that not all cognitive impairments are Alzheimer’s or on their way to becoming Alzheimer’s.  Many are due to some other disease that is treatable or even reversible.  While not curable, vascular dementia (due to small strokes) can be stabilized by stopping cigarette smoking, lowering cholesterol, reducing high blood pressure and controlling diabetes.  Normal pressure hydrocephalus can sometimes be treated. And some other dementias—such as Parkinson’s disease, Lewy Body disease, Frontotemporal dementia, Pick’s disease and other rarer forms—will have courses different from Alzheimer’s that might be helpful to know about.

And there are some causes of dementia that can actually be cured:

• thyroid disease,
• depression,
• over-medication or side effects from even appropriate doses of certain medications,
• some vitamin deficiencies and
• abuse of alcohol. 

The second reason for knowing is that it’s important to be able to plan for the future with spouse, children and close friends.  These people will need to know how you want to be treated when you can no longer guide them.  A related reason is that financial planning needs to be done early, especially planning for long-term care.

There are a number of other reasons to get tested that are more individual.  In my own case, worrying is always worse than knowing.  I’d much rather be dealing with a known enemy than wondering whether he might be lurking around the corner.  I also want time to prepare friends and family to move through this journey with me, to alert them to what’s coming, so that we can avoid some of the stigma and embarrassment that too often accompanies this disease.  If I’m noticing symptoms, friends and family are going to notice them sooner or later, too … whether I get tested or not.  If I get tested and everybody knows, we can work consciously on our changing relationships rather than feel embarrassment and pretend that nothing is wrong.

The question becomes much more difficult when the patient himself is mentally incapable of recognizing his symptoms (anosognosia) or is in psychological denial.  In the former case, he may be willing to trust his spouse or children to go for a neurological exam, anyway.  The person in psychological denial may be the most difficult.  In such cases the better part of valor may be retreat.

[In early August I mentioned I would have a neuropsychological evaluation at the end of the month.  I had the evaluation two weeks ago but am still awaiting the results.  I suspect that the tension I’m feeling as I await results may unfortunately be keeping my well of material from which I usually draw pretty dry; hence, no post in the past week.  I expect I’ll have lots to say when I know more about what’s going on.]