Forget Alzheimer's

I was asked to think about this question: "When should you worry about memory loss and when should you not?"

My first response was to think about meanings of worry. There's worry which leads us to retreat from challenges, often wisely. There's worry which leads us to manage challenges and learn things.

The risk of retreating from memory challenges is unusually high because persons with memory challenges can cause accidents, can get lost, can be mistreated by others and because lack of physical and mental activity lets memory challenges grow.

These risks can be managed.

My approach – and this is a growing movement – is this: First, learn how to manage risks due to memory challenges and advocate for aid in managing these risks.

Second, learn about ways persons having memory challenges can enrich their lives with physical and mental activities. And, advocate for aid to make these activities more widely available. You can see what we know about these life enriching activities at Dancing Away Memory Blues.

Third, we should beware of traps in the medical model of memory challenges.

It may be important for research and clinical purposes to give observed memory challenges a name. The many categories – Alzheimer's, vascular dementia, FTD, PPA, etc. etc. – may be useful for clinical and research proposes. But, what is their reality?

I've attended many presentations where a pathologist compares her findings with the earlier clinical evaluation. The pathologist finds evidence for stuff in the brain fitting many of the categories and has to score the stuff using sets of agreed-on criteria. To this old physicist agreed-on and score are awfully arbitrary and suggest that Alzheimer's and the other similar categories may not be real.

It looks like each person with memory challenges has their own mix of stuff going on in their brain. And, I can't forget those nuns having no symptoms with brains that turned out to have more than enough stuff to score in the Alzheimer's category.

Our brains, like all parts of our bodies, need repair work all the time. The brain repair systems often – always? – go haywire and damage is done, creating memory challenges.

These challenges vary from person to person: One has almost no use of nouns but can navigate a large city with no difficulty. Another is more lucid than most normal persons but gets lost in his own house. Some get great benefit from treatments. Others do not.
I do use the word Alzheimer's sometimes to ease communication when I don't care about any misinterpretations. But I very much dislike putting persons into categories. I very much prefer connecting with persons in all the ways we overlap and do not overlap.

The name given to a person's memory challenges – whether for communication simplicity or for clinical and research niceties – can get in the way of managing risks and enriching lives. This must be avoided!

A growing number of my fellow gadflies are exploring the idea that the memory challenges – whether called "Alzheimer's" or some other related category – should be thought of as brain injury issues. This might expand research and program agendas which we think are now trapped by limited orthodoxy. There's also growing suspicion that molecular events behind memory challenges start with a brain injury, however mild and unidentifiable, followed by the brain's repair system(s) going haywire.

I especially like the vision statement of the Brain Injury association of America:
"A world where all preventable brain injuries are prevented, all unpreventable brain injuries are minimized, and all individuals who have experienced brain injury maximize their quality of life." Substitute "memory challenges" for "brain injury" and you see that last quality-of life clause is also my vision here.

Whatever we call causes of memory challenges, however we prevent preventable memory challenges and minimize memory challenges, we have no excuse for delaying any work to maximize quality of life.

I repeat: I, and a growing number of others, think that the proper approach to memory challenges is first learn specific risks of specific challenges and learn to manage these risks, and second avail ourselves of life enriching physical and mental activities.

Please note that these steps are good and proper for everyone! The only difference is that memory challenges lead us to be especially clear about these steps and that living with memory challenges can teach us much about living!

Recently I read a review of a book about reasons women leave science and other professions. It occurred to me that an underlying problem might be the way we've organized work.

In science and various professions, if a person can do the work, then that person is expected to do extreme amounts of the work. Few succeed. Many opt out. Is only a mono-culture left?

Maybe these professions should worry about losing insights of persons not comfortable with the way the work is now organized. Maybe work should be re-organized so that more people contribute – so that more diverse insights are brought to bear on the work.

Large corporations have learned that diversity in the workplace can increase worker empowerment leading to superior work – that diversity in decision making can lead to superior decision making.

The point is that giving full voice to – and honoring – diverse insights is useful as well as morally correct.

You see where I'm going. I wrote recently that we know that persons with memory challenges have insights we can not have. So, we should re-organize our thinking to benefit from these insights.

Thinking – worrying – about memory challenges for the last six and a half years taught me more about life than all my previous sixty plus years. So, maybe it's always good to worry about memory challenges, at least to learn from us worriers – or should that be warriors.

Don Moyer