Our Silence Around Dementia

dementia2by Danielle Ofri
New York Times

“A fate worse than death,” my colleague muttered to me as we examined an elderly man admitted to the hospital with severe dementia.

From his medical chart we knew that the patient had been an accomplished sculptor and intellectual contrarian. He’d taught classes at a prestigious art school, and his work was exhibited across Europe and the United States. To see him now, with hardly a sliver of his personality left, encumbered with physical injustices you wouldn’t wish upon your worst enemy, was beyond heartrending.

There was something almost shameful in bearing witness to a fellow human being’s profound indignities. I was embarrassed for him, for how embarrassed he would likely be, if his former self could see his current self. That his current self lacked the capacity to be aware of his state offered little comfort.

My colleague and I ducked out of the room in silence, lost in our own private stew of unease, wincing at our unspoken keenness to move on to other patients.

Dementia is not something we doctors talk much about. We all have many patients with dementia — and more every year — but we never seem to chat about it the way we discuss kidney disease or cancer treatment. We may talk about the difficulties of obesity or emphysema, but never about dementia.

Why the silence? It certainly isn’t that dementia is rare. Alzheimer’s disease, the most common form of dementia, is ranked as the sixth leading cause of death in the United States, though recent analyses suggest that it might actually be the third. Even if we don’t specialize in geriatrics, the aging of the general population brings dementia into the offices of every medical field, save pediatrics.

Perhaps it’s the invisibility of the illness, especially in its earlier stages. Most medical visits are crowded with the exigencies of the more clinically obvious illnesses — heart disease, diabetes, hypertension — that we doctors may miss the subtle signs of dementia.

I suspect, though, that our reticence stems from deeper issues. All the top 10 killers in America are potentially preventable, or at least modifiable — all except dementia. The medical field takes rightful pride on the progress that’s been made against heart disease, diabetes, strokes. We have tests to screen for many cancers, and treatments that prolong life. Even suicides and accidental deaths can be amenable to prevention.

But there’s nothing, really, that we can do about dementia. There aren’t any screening tests that can pick up the disease before symptoms appear. And even if there were, there aren’t any treatments that make a substantial difference.

For doctors, this is profoundly frustrating. No wonder dementia gets pushed onto the back burner. In the dishearteningly limited time of a medical visit, we’re forced to focus on the diseases we can treat.

But I think that our silence on dementia is more than that. For doctors, cognitive currency is our only currency. The idea of the mind vanishing is more petrifying than much of the bodily devastation we are privy to. The loss of intellectual capacity — not to mention personality and the ability to care for oneself — taps into an existential fear that we prefer to overlook.

I thought about this as I read a recent issue of the journal Health Affairs devoted to Alzheimer’s — nearly 200 pages that exhaustively explored the diagnosis and treatment of the disease, the experience of patients and caregivers, the mammoth burden assumed by spouses and adult children of patients. The profusion of commentary and research results and task force recommendations was an embarrassingly stark contrast to the relative silence on the clinical front.

This is not the first disease in which the clinicians have trailed the researchers, the families and the activists. The all-too-recent history of AIDS is another example. The parallels of doctors’ own discomforts and often willful ignorance easy to see.

In both cases, the actions of doctors — or lack thereof —can be only partly attributed to the practical difficulties of diagnosis and treatment. Mixed in are the existential and emotional aspects of ourselves we prefer to ignore and often remain wholly unaware of.

Most doctors are required to get recertification every 10 years, to undergo a battery of tests and training courses to keep us up to date and to identify shortfalls in our medical skills. We don’t, however, do any periodic checks on our inner selves, to uncover any lapses in our emotional core that might affect the care of our patients.

Just because the diagnosis of dementia can be difficult and treatments frustratingly limited doesn’t mean we can shy away from this disease. We need to face down our own uneasiness, confront our own disconcerting reactions, so that we may be there in full for our patients, their families and, indeed, ourselves.  (from the New York Times)