Unafraid of aging

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On June 25, 2012, The New York Times published Karen Pennar’s Unafraid of Aging, highlighting Dr. Linda P. Fried. It was the most recent installment in their series “Profiles in Science.” 

An epidemiologist and geriatrician, Dr. Fried, dean of the Mailman School of Public Health at Columbia University, has focused her career on what she sees as the definitive challenge of the 21st century: embracing our transition to an “aging society”  in which, over the last century, our life expectancy has increased from fifty to eighty-plus years.

Pennar’s opening paragraph is the focus of today’s post:

“The signal public health achievement of the 20th century was the increase of the average human life span. Now, as that achievement helps raise the proportion of the aged around the world, what once seemed an unalloyed blessing is too often regarded as a burden — a financial burden, a health care burden, even a social burden.”

“It’s nuts,” said Dr. Linda P. Fried. “To assume defeat from what every one of us as individuals wants suggests we’re not asking the right questions.” She continues that findings from the science of aging should “reframe our understanding of the benefits and costs of aging.”

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Video

Dr. Linda P. Fried (Video by The New York Times06/25/2012)

Linda P. Fried: An interview with the geriatrician and dean of the Mailman School of Public Health at Columbia University on preventing frailty and the transition to an aging society

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So how did we, as a society, grow to be so ambivalent towards growing older? Why do so many people seem to fear it? And what can we do to turn things around?

Not just to ameliorate that gnawing unease, but to begin to uncover, highlight, and advance the myriad benefits we, as a society, can reap from the huge jump we’ve achieved in average lifespan.

How can we support older adults in maintaining involvement in their communities post-retirement? There is so much to be gained, both by our aging population and society as a whole, if we can find positive ways to encourage lifelong engagement.

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 Dr. Fried has focused her career on what she considers to be the challenge of the 21st century: embracing our transition to an “aging society”  in which, over the last century, our life expectancy has increased from fifty to eighty-plus.

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How do you live…?

On June 7, 2012, the New York Times published an article (for inclusion in the Sunday, June 10 Sunday Magazine) entitled  How Do You Live Knowing You Might Have an Alzheimer’s Gene? (the article itself is quite good)

I was taken aback by the title. I know that the Sunday Magazine has a distinctly different tone from most of the Times‘ publications, but this just felt so…wrong. It sounded sarcastic and hateful, as though it were spewed from a particularly spoiled teenager’s mouth. “Ugh, how do you live, driving that car?”

Let me state that I do not want to marginalize anyone’s experience with Alzheimer’s Disease or other forms of dementia; I know that there is a huge range and that many people have seen awful, heart-wrenching things as a result of these illnesses.

But I also know of people who’ve had rather positive experiences: the angry and critical father who still recognizes his family but now enjoys spending time with them and actually listens to them; the woman who knows that she has moderate dementia but doesn’t mind it. She told me it was nice not having to worry about so many things. These may be exceptions and not the norm, but they exist.

So, too, do people who’ve seen a mix of positive and negative consequences of dementia. This group is the most common, at least from what I’ve seen. Certainly they wouldn’t wish dementia upon themselves or others, but the experience as a whole is more different than it is specifically positive or negative.

My point is, the idea of “How do you live, knowing you’re going to get Alzheimer’s at some point?” may be an interesting question, but it also reinforces the widespread belief that dementia brings nothing but sadness and pain. And that’s simply not the fact of it.

Reframing dementia as a terminal illness: early onset

Recently I’ve been thinking a lot about dementia and how we, as a society, view it. I detect a paradigm shift.

Observing how different groups  discuss dementia, I’ve noticed a split in perspective. It seems determined by whether or not the speaker is, herself, living with the disease.

The difference between the two sides? A shift towards viewing dementia as a progressive, terminal illness rather than as a foregone conclusion.

This is just one in a series of posts on this topic. Today we’ll discuss early-onset forms of dementia.

Dementia is progressive

Essentially, dementia is brain atrophy. It’s a degenerative disease. Why do we sometimes think of it as a normal part of aging? It is not.

Just like others who are terminally ill, those living with the symptoms of dementia deserve to be treated as individuals living with a progressive (meaning it gets worse, not better) illness. The key word is “individuals.” Too often they’re dismissed as “too stressed,” “just getting older,” or “losing it.”

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Dementia is most often thought of as a memory disorder, an illness of the aging mind. . . . But experts in the field say dementia is more accurately defined as fatal brain failure: a terminal disease, like cancer, that physically kills patients, not simply a mental ailment that accompanies older age.

-Catherine Elton
Reframing Dementia as a Terminal Illness
TIME Magazine (10/14/2009)

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In Catherine Elton’s article, Reframing Dementia as a Terminal Illness (excerpted above), Elton interviewed Dr. Greg Sachs (of Indiana University‘s Center for Aging Research). He discusses the study, The Clinical Course of Advanced Dementia,* published in the October 15, 2009 issue of The New England Journal of Medicine. Sachs wrote an accompanying editorial for the journal.

“This is the first large study to show what specialists have been arguing for years. Dementia is a terminal illness, and patients warrant palliative care,” Sachs says.

Talking to kids about dementia

 

Do you both have kids and care for someone with symptoms of dementia? Or maybe you’ve been diagnosed with dementia and want to talk to your family about it. How can you talk to children about things like Alzheimer’s Disease or other dementias?

My experience

When I was little, my grandfather began developing dementia (probably Alzheimer’s). Honestly, I was scared.  I was confused and felt completely helpless seeing this man I’d always looked up to getting…well, he was acting kind of strange.

It started out with little things: he’d trail off during a story or he’d forget where he put things. He didn’t recognize my brother when they ran into each other at church. Then he had to stop driving. Then he started forgetting common words like “fork” or “brush.” And it went on from there, for years…

Obviously something was up, but no one was really talking about it.

It scared me: as a kid and teenager I felt like my family only avoided discussing “really bad” things. We weren’t discussing this: it must be “bad.”

So I withdrew. I didn’t know it at the time, I didn’t mean to, but looking back I realize that’s what I did. Because I didn’t know what was going on, I found my grandfather’s behavior scary, unpredictable, and a little embarrassing.

I’m tearing up a bit as I write this; I still feel bad about it. I didn’t know any better, of course, but I hate to think I may have hurt his feelings. (Yes, even if he didn’t recognize who I was. Check out Emotions without memories for more on that…)

So I wanted to write about this topic, how to discuss dementia with kids, so that others may have a better understanding of what’s going on and what it means.

 

How we perceive dementia

Recently, I’ve been considering how our society perceives dementia and how we treat those who live with its symptoms.

It seems to me that there are a lot of misconceptions.

Not just the mistaken idea that the words “Alzheimer’s” and “dementia” are interchangeable (they are not the same). There are larger issues: cultural stereotypes about how people with dementia “should” act; our tendency to oversimplify its myriad effects on varied individuals; our willingness to categorize the diagnosis as an immediate and unmitigated tragedy.

It’s also a topic that a lot of people take pains to steer clear of.

Maybe it’s because they’re afraid of it; dementia does bring an element of the unknown that can be hard to accept. Plus, many causes of dementia can’t currently be cured.

But our societal unwillingness to talk about it propagates exaggerations and myths. As a result, it’s rare to find a nuanced view of dementia. This is why I think the writings of individuals like Kate Swaffer and Richard Taylor, PhD are so important: they provide glimpses into the complex world of living with dementia.