I don’t know Tennessee women’s basketball coach Pat Summitt, but, as a fan of the Stanford team, I’ve never been fond of her.  I had to watch her too many times along the sideline as Tennessee pulled out a win, and pulled out Stanford hearts.   I certainly had to respect what she accomplished, but I didn’t have to like her.   But when, late this August, she announced that she had been diagnosed with Alzheimer disease,  my heart went out to her (especially when I discovered that she is exactly, and only, 11 days older than I am).  I felt a similar twinge, though more distant, when I read in July 2009 that Karen Williams, Chief Judge of the Fourth Circuit, was retiring at age 57 after a diagnosis of Alzheimer disease.

Judge Williams retired, but Coach Summitt did not.  Summitt had noticed memory lapses over the previous year, from forgetting what time she had called practice for to forgetting what offensive set she wanted to called in a game.  She thought iit might be due to medicine she was taking for rheumatoid arthritis, but in May she was told by doctors she had consulted at May Clinic that she had early onset dementia, Alzheimer’s type.  When she made a public announcement of her condition in late August, she had raised more than a few eyebrows when she announced that she planned to coach at least through 2011-12. Her role was going to be modified, giving her long-time assistants more game responsibility.  (For more on Summitt and her condition, see this very personal article in the Washington Post.)

Strong, successful, healthy people, still in their (intellectual, if not physical) primes, brought down by this terrible disease –  What’s going on?

Part of what is going on is earlier, and better diagnosis.  We used to wait until someone was having serious trouble and then make the diagnosis solely based on behavior.  We knew physical indicia of the disease existed, but they required brain samples, not easy to get before an autopsy.  But now we have other ways to get more evidence of Alzheimer disease (or its absence).  Summitt got the behavioral tests but also the physical ones:  The Post reporter states that, after the end of last season, when she went to Mayo  “for three days she underwent a battery of tests, an MRI exam, a PET scan, a neuro-psychological evaluation, and a spinal tap.” The MRI scan would have been looking for changes in brain volume; the PET scan probably looked for the build-up of beta amyloid, a small protein, in plaque form on her neurons.  The spinal tap checked her cerebral spinal fluid, the liquid that bathes the brain, for its levels of amyloid and tau, another protein involved in Alzheimer disease.  She could also have had her blood tested for amyloid and tau levels.

It used to be that doctors could distinguish between Alzheimer disease and other forms of dementia only on autopsy, if one were performed.  Now they can make the diagnosis with more confidence early – and help distinguish between untreatable Alzheimer dementia and other, possibly more malleable, diagnoses.  So more people are being diagnoses early, when their memory lapses aren’t necessarily much greater than the “age associated memory impairment” many of us feel – that sense that our memory isn’t as good as we remember it being.

This was brought home to me several years ago when I spoke at a meeting held by the Alzheimer’s Association in Oakland, California. I’ve done a few meetings, usually on genetic issues, for the Alzheimer’s Association, but they had all been mainly for caregivers or family members of people with the disease.  This meeting was for people with Alzheimer disease, albeit in the early stages.  I went with some dread; this particular fate has always terrified me, I suppose because my (formerly?) very good memory has always been an important part of my self-image.  Yet the meeting was uplifting.  The people who spoke were smart,  productive, and not depressed.  They talked of good days and bad days, but did so with confidence and presence.  Which made it all the more painful when one person, who had spoken about an hour earlier, spoke again and repeated herself – with confidence and presence, but with no memory that she had spoken before.

So what does all this mean?  As we diagnose people at earlier stages of the disease, we diagnose people who are increasingly competent and “abled”.  What do we do with them?  What do they want to do with themselves?  The best answer is probably “it depends.”  I suspect Judge Williams, in a position where both her actual competence and the perception – by parties, counsel, and colleagues – of her competence is crucial, did the right thing.  For her.  I hope that Pat Summitt (and Tennessee’s leadership) did the right thing for her.  Her responsibilites can be, I think, better and more legitimately shared than a judge’s.  I do not expect this to make Tennessee any easier to beat this year; maybe the opposite.  But this disease is relentless.  She will have to retire sometime.  Determining “when” – and “how” – will be hard.

And it is just those choices that earlier diagnosis will make both more common and more difficult.  Retiring the obviously senile may be sad but is not usually that hard (except of course for those with life tenure).  Dealing with people who know, and who we know, are having their ability to remember, and their competence, slowly but inexorably stripped away will be harder.  We have to think about how best (or, at least, “not worst”) to deal with – to help –  those co-workers, and friends.

Alas, science just keeps making this problem harder.  Alzheimer disease appears to progress for a long, long time – perhaps decades – before its symptoms appear.  To the extent we can see the presymptomatic progress of that disease and decay, we will be able to predict who will (and will not) be diagnosed within the next decade or so with Alzheimer disease.  How do we treat people who do not (yet) have clear symptoms of dementia but who, we are confident, will show those signs?  And how do the people in that position act?  We will soon have to deal with those problems, too.

So, good luck to Pat Summitt (except against Stanford).  Good luck in part because her struggles are not hers alone, but an early example of the problems that hundreds of thousands, if not millions, of Americans will now face.  And good luck, too, to the rest of us, each of whom will this evil disease or have colleagues, friends, or family with it.  But we need more than good luck. We need to get to work.

Hank Greely