National dementia

The other week, one of my daughters gave me a web clipping of my column when it was still called “Pinoy kasi.” The column was dated Sept. 27, 2022, and was titled “National dementia.”

I had only recently discovered that on Sept. 21, 1994, an organization called Alzheimer’s Disease International had established World Alzheimer’s Day in several countries, with activities for World Alzheimer’s Day and Month, with an overall objective of initiating early interventions around Alzheimer’s disease, the earlier the better.

Last week, I was invited to talk about Alzheimer’s at an activity sponsored by the theater group Peta, and the organizers told me not to talk too much about the medical aspects and instead concentrate on the social and political, which I did. But as the session unfolded, in a mostly question-and-answer format, I realized there was still very little lay understanding of the disease, which made it difficult to speak about the social and political.

I think we did make some progress, but I felt we might have needed at least a whole day, especially to find ways to create new platforms, theater in particular, for audiences to relate to, especially students and especially young ones who could get to more people through theater.

Back in 2022, when I did my Alzheimer-martial law column, I already felt the limitations of a one-column article, in print format. After I finished that session and thought some more about the topic, I thought I could easily spin off new storylines and narrative forms. I had two puppies with me (yes, new 3-month-old babies who may well be part of future casts).

In fact, I wanted to move Alzheimer’s away from a geriatric issue to one that would encompass the entire life cycle. Having cared for loved ones with Alzheimer’s, more than 10 years for a mother and almost three years for a father, and doing this while solo parenting several children, there was no way to think of Alzheimer’s as a geriatric disease alone. (Let me qualify here that there is also early-onset Alzheimer’s, which affects people as young as in their 40s, but the majority of patients are still those above 70.)

Caring for elderly parents with Alzheimer’s did mean that my children grew up with Alzheimer’s and knew what it meant to live with Alzheimer’s. One of the most dramatic consequences here came unexpectedly when I brought one of my sons with me to have my mother checked at the hospital.

At one point, I left the examination room because I knew what was coming up—an insertion of a nasogastric tube, which my mother dreaded. I could hear her arguing with the nurses almost as soon as I left her room. And then I heard a little boy’s voice and realized I had left my son with his lola. I thought of calling him back but thought it’d be another complication if my mother saw me, possibly then pleading her case with me.

But then the pleading tapered off and my son’s voice became more audible: “That’s OK lola, that’s OK. It will be all right.” There may have been different reasons at work here—the hospital setting, the consulting doctor, who had become a familiar face, and yes, maybe, my son. The tube was inserted.

I marveled at how an 8-year-old boy had somehow picked up on compassion.

Alzheimer’s is one of those long-playing conditions offering such lessons, with a large “cast” and with many different “scripts” that play themselves out, all important because the disease can take years to play out, with new treatments and prognoses (and hopes and disappointments).

Imagine what it’s like in the Philippines, not just in hospitals. Just this morning, the front page of the Inquirer had a story about the town of Hagonoy complaining about its flood control “passion play” still plaguing residents. I was shocked because as a freshman college student, my first social action mission with the UP Student Catholic Action (UPSCA) was to Hagonoy. We had to use bancas for the last leg of the mission, ferrying in relief goods, and while in UP, I got to join other missions to Hagonoy that had become perennial.

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That first mission I joined was in the early years of martial law, half a century ago. I wouldn’t be surprised if the missions are repeated for the same reasons, including “anomalies” in government funds.

We think of dementia as a disease of the elderly, reduced to forgetfulness, a term which is not accurate. We are actually talking about dementia, which can include forgetfulness. But dementia is caused by Alzheimer’s and other conditions that affect the brain, and spins off various conditions, including but not limited to forgetfulness. “Executive functions” is a more accurate term to describe what happens. Sometimes, too, reference is made to decision-making, patients having difficulty choosing between options, finances, and just counting out money to pay.

On a less serious (but still serious) vein, making a decision about a relationship, all the way up to marrying someone (or leaving that someone), is also an executive decision.

Political decisions are executive functions, too, which is why the whole world has reasons to worry about Donald Trump as United States president. And thinking about the Philippines, corruption can involve outright immorality as well as a brain that can no longer make rational decisions. That’s dementia too.

Next week: how do we tackle a decades-old affliction of national dementia?

michael.tan@inquirer.net