Blog | Thursday, December 6, 2012

'Pleasantly demented'

Scene: Morning rounds. Six medical types, varying in station from student to graybeard, are outside a patient's hospital room.
Graybeard: Who's presenting?
Resident: Jennifer's going to. [He gives a nod to the medical student.]
Jennifer: The patient is a pleasantly demented 89 year-old female brought in last night by her family for a change in ...

Versions of this scene occur every day in America's teaching hospitals. As the population ages, we continue to hospitalize more senior citizens afflicted with memory loss and behavioral changes that constitute the diagnosis known as dementia.

The most common type by far is Alzheimer's dementia, named for an early 20th century German pathologist, who came to understand the condition as a disease that gradually and irreversibly destroys the brain. When I was a kid, we just called it "being senile," as in "Uncle Bud is senile." Looking back on it, what he had was Alzheimer's.

Alzheimer's is a huge medical challenge: There is no diagnostic test for it. We are stuck with labeling a set of symptoms and behaviors as Alzheimer's. There are characteristic patterns that differentiate Alzheimer's from other types of dementia, but at best, we're still guessing. The only sure way to diagnose it is either with a brain biopsy (usually too dangerous and invasive) or an autopsy (usually a little late to matter). Alzheimer's is progressive, which means it only gets worse–albeit at different paces for those it afflicts. It causes huge turmoil for families (particularly the caregiving children) of those affected. There's no meaningful treatment other than preparation and advance planning. [Yes, there are some pills, but let me be honest with you about them: They're worthless.]

One aspect of dementia that's particularly intriguing is typified in the dialogue above. What constitutes "pleasant dementia?" Isn't that oxymoronic?

Some of those with dementia are indeed blessed with pleasantness (this attribute is without doubt in the perspective of caregivers, but likely holds true for the patients themselves). Author Sara Davidson wondered about how her mother, who had been opinionated and challenging pre-dementia (e.g. she always sent back items at restaurants) was now cooperative with a sunny disposition: Here's a paragraph from a 2008 Newsweek article about her mother:

What had caused this reversal of personality? Did dementia bring her serenity and the ability to live in the moment--a state I've spent many hours in meditation trying to attain? It would seem that we need memory in order to hold a grudge, worry or be angry. To obsess about a problem or compare the present unfavorably with the past, we need to remember it. Yet many people with Alzheimer's do become angry, paranoid or agitated. Dr. Robert Green, who directs the Alzheimer's Disease Center at Boston University School of Medicine, says he sees patients "get more cantankerous and disagreeable. Lots of researchers are looking at these negative behaviors. But I can't recall a paper about people who get more blissful."

Like Dr. Green, I've wondered about this. There's something extra sad about those we deem to have "agitated' dementia. Patients in such a state are in a living Hell of constant anxiety, worrying those around them with no ability to remember anything calming or reassuring. The pleasantly demented, on the other hand, have a beatific ability to just "let things go" and live in the moment, as Davidson writes.

Wouldn't it be great then if we had some way to predict the patterns or perhaps help push the behavior of those sliding into dementia toward the sunny side? There's no doubt that it's easier to care for those that are kind and sweet as compared with those that are cantankerous and cranky. In no particular order, here are questions that spring to mind about this situation (researchers, get your pencils ready):

--How much does our pre-dementia disposition impact our disposition with dementia?

--Does how we behave when we have dementia represent our most authentic selves? Is it simply us with the filter off? Our guard down?

--What is the proportion of us that have "pleasant dementia" to those with agitated types?

--Do the afflicted go through stages, such as early-on more agitation from frustration as memory flickers to pleasantness when it fades altogether? Or are we simply frozen in the disposition into which we cross the threshold into dementia?

Many of us would like to know these answers. If you have a story about a loved one that you're willing to share, please do.

This post by John H. Schumann, MD, FACP, originally appeared at GlassHospital. Dr. Schumann is a general internist. His blog, GlassHospital, seeks to bring transparency to medical practice and to improve the patient experience.