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.

Reminiscence and reminiscence therapy

“I remember that time when…”

So begins many a session of reminiscence therapy.

What’s reminiscence therapy? It’s using guided communication (and, often, objects from the past) to stimulate memories and help someone reconnect with her personal history. But that makes reminiscence sound more complicated than it is.

Picture this: searching for a pencil, you reach deep into a desk and your hand brushes across a seashell that’s somehow found its way into the drawer.

You pull it out, feel the ridges and the smooth inside.

As you hold the shell and touch the surface, memories of a long-ago trip to the beach flood your mind. You can hear the ocean and the wind and the birds. You feel the sun and salt on your skin, taste the sea in your mouth. The smell of waves fills your nose and you are almost transported to the scene, the feeling is so visceral. Walking in ankle-deep water looking for a perfect shell; your foot sinks into the sucking sand, a slight sunburn flushes your shoulders as another wave rolls in and tumbles the shells. You bend to pick up a nearly perfect one and the flash of the sun on the water momentarily blinds you…

Just touching that shell brings it all back.

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.

More on music for dementia

Last night, National Public Radio aired a story, “For Elders With Dementia, Musical Awakenings,” that sheds additional light on the many applications of  music for people with dementia.

To read last week’s post on the topic, please click here: “The quickening art” – music and dementia. In “The quickening art” we began to look at some of the science that underlies our reactions to music.

In the above segment, Melissa Block interviews Dan Cohen, the social worker featured in the upcoming film Alive Inside, and discusses how the Music & Memory project came about. Music & Memory ran the program depicted in a widely-seen clip from Alive Inside that recently went viral on YouTube: over the past week and a half it’s been viewed more than 5 million times. The clip is included towards the bottom of this post.

Reconnecting

One of my favorite parts of the NPR interview was when Block asked Cohen a question I, too, had been wondering: don’t the headphones just further isolate people?

Signs of dementia? or just normal aging?

“Hey, where are my keys? I’ve looked EVERYWHERE!”

“Oh, no…is this Alzheimer’s??”

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Sound familiar?

Increased awareness of Alzheimer’s and other degenerative dementias means Baby Boomers (and the generations that follow) are acutely cognizant of the havoc it can wreak on a life. Some of us become hyperaware of the slightest changes we perceive, worried that any mental lapse is a sign of impending dementia.

Others, knowing that some change in cognition is normal with advancing age, mistakenly write off real symptoms as “just getting old.”

So, how can you tell the difference between normal aging and early signs of dementia?

Delirium

 

My 90-year-old grandfather recently experienced a blood pressure spike. I’m not sure of the specifics, but I know that it scared both him and my grandmother enough to immediately take him to the health center in their CCRC (Continuing Care Retirement Community)…where he was promptly sent to the emergency room.

My grandfather, already in the early stages of dementia, stayed at that hospital for 3 nights; my cognitively-normal grandmother spent most of that time at the hospital, too, either in the waiting room or at his bedside.

By the time they returned home, things were bad.

My grandfather, who used to be forgetful-but-can-still-do-things-for-himself, was now bedridden, depressed, and confused.

Yes, it’s time to move: moving to a residential care community

But what kind of residential care community?

All of the options can be overwhelming.

For a long time I didn’t know the difference between, say, Memory Care and Assisted Living; I thought that they were just marketing terms.

They aren’t.

Many types of communities are specifically defined by each individual state, but this is an overview of some terms that you’re likely to hear.