Tag Archives: Alzheimer’s – Hope for Tomorrow – Help for Today

Alzheimer’s, Baby Boomers and Ralph’s Python Theory

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Until recently Ralph has always been a man passionate about theories. He would grab an idea, explore it to death and then eagerly explain it to everyone he knew.

He stopped believing some (socialism) and lost interest in others (glucosamine), but there were plenty (what it means to be “cool”) he never stopped expounding.

The Python Theory was among the theories he told me back when we first met in our twenties and never tired of explaining for decades.

According to the Python Theory, the Baby Boomer generation is so large that its influence moves society the way a swallowed egg moves through the body of the python. I assumed he picked up the term from something he read, but when I went online, the only reference I found was a 2008 article in the N.Y. Times stating a very different Python Theory of Inflation.

Of course, Ralph is a Baby Boomer—as am I. Whether or not Ralph came up with this baby boomer Python Theory metaphor on his own, in his version, he always considered himself (and by extension me) a cutting edge Baby Boomer/python egg.  A trendsetter for other baby boomers. And it’s true—in his music, in his politics, in his lifestyle choices and life occurrences, he has usually been slightly ahead of the curve.

So when he first got the diagnosis of Mild Cognitive Impairment, he laughed with sardonic, ironic pride that once again he was leading the Baby Boomer egg through the Python’s body.

And he was right. According to the recent article “As Baby Boomers Age, Alzheimer’s Rates Will Soar” by Dennis Thompson on the WebMd site,  Ralph is on the cutting edge.

The article is a bit terrifying in terms of both numbers and costs.

For instance

….More than 28 million baby boomers will develop Alzheimer’s disease during the course of their lifetimes, the researchers estimated.

By 2050, all baby boomers will be older than 85 and half of those still alive will suffer from Alzheimer’s disease, said lead author Lisa Alecxih, senior vice president of The Lewin Group and director of the Lewin Center for Aging and Disability Policy.

That’s up from an estimated 1.2 percent prevalence of Alzheimer’s among boomers in 2020, when most boomers will be in their 60s and early 70s….

…In 2020, the projected Medicare costs of caring for baby boomers with Alzheimer’s in the community will be about 2 percent of total Medicare spending, amounting to nearly $12 billion in 2014 dollars, the researchers estimated.

But by 2040, when the baby-boom generation is between 76 and 94 years old, projected Medicare costs increase to more than 24 percent of total Medicare spending, or about $328 billion in 2014 dollars, the new analysis said…

The article goes on to recommend more funding for research and more involvement by Baby Boomers, quoting Keith Fargo, director of scientific programs and outreach for the Alzheimer’s Association:

“The folks in this baby-boom generation are really the ones we need to step up to the plate and participate in some of the large Alzheimer’s prevention studies that are happening now,” he said. “Even people who don’t yet have any cognitive [mental] decline can help in this fight, by participating in those prevention studies.”

I think Fargo’s talking about me. I need to be an egg too.

P.S.  While writing the above, I asked Ralph to define his Python Theory. He couldn’t remember it. I jogged his memory. Then he described the visual of the egg and the snake perfectly but said, laughing, that he had no idea why he once thought it was important.

“Younger Adults With Alzheimer’s Are Key To Drug Search”–My Greatest Hope and Fear

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I realize there is much controversy about how money should be spent on Alzheimer’s research—whether more funds should go to a cure or go to prevention. Self-interest has kept me hoping that research finds a way to prevent Ralph from the currently inevitable slide into more serious dementia, yet I also have told myself that preventing Alzheimer’s from affecting masses of others is the more altruistic approach.

Then I read the article,“Younger Adults With Alzheimer’s Are Key To Drug Search,”  . Focusing on a 37-year-old woman diagnosed with Alzheimer’s, it claims that testing for certain Alzheimer’s genes could be a crucial part of the research to prevent Alzheimer’s:

“Until recently, people who inherited this gene had no hope of avoiding dementia and an early death. Now there is a glimmer of hope, thanks to a project called DIAN TU  that is allowing them to take part in a study of experimental Alzheimer’s drugs.

The project also could have a huge payoff for society, says Dr. Randall Bateman, a professor of neurology at Washington University in St. Louis. “It’s highly likely,” he says, that the first drug able to prevent or delay Alzheimer’s will emerge from studies of people genetically destined to get the disease.”

I hope Dr. Bateman is correct. But I can’t help thinking about Alzheimer’s in purely personal terms. And really, the pros and cons of the research were not what came to the forefront as I read the story.

All I could think about were my kids. Basically the Alzheimer’s gene is the monster in the room that has scared me too much to acknowledge out loud.

I doubt I am alone in this avoidance. I’ve noticed that children, most of them already grown, receive only passing mention on many spouse caregiver sites devoted to Alzheimer’s. And the heroic children caring for their parents with Alzheimer’s are so busy writing about their concern for those parents that they never mention fears about their own future.

But the genetic connection of Alzheimer’s within families does exist as this article, and many others make clear [“Alzheimer’s Disease Genetics Fact Sheet for the NIA”,   ”Alzheimer’s genes: Are you at Risk?”,    and a variety of scholarly studies.

The thought that Ralph’s and my kids may be at high risk for developing Alzheimer’s is horrifying.

But the thought of them getting tested horrifies me too. There are all kinds of genetic risks my descendents already face. Cancer, heart disease, and diabetes to name a few. Do they need to be burdened with the certainty, or even the likelihood of Alzheimer’s? I am someone who would rather not know my future (or the future of those I love, especially if that future is going to happen once I’m not around frankly). But my kids are not me. Eventually each will decide what course he or she wants to take.

While I certainly wish Ralph had not developed Alzheimer’s, we are adjusting day by day. In fact, I am fast reaching the point of not quite remembering what life was like before. Alzheimer’s has become central to our life as husband and wife, or as the ever wise Alzheimer’s Wife  recently posted, “part of the bargain.”

The kids didn’t buy into that bargain. But they eventually they may have to own it. It’s not fair, but it’s life.

Is MCI Dementia?

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Several weeks ago Ralph and I sat down with a bowl of popcorn and watched the program “Alzheimer’s – Hope for Tomorrow – Help for Today” on our local public television station. Ralph’s doctor was featured as well as a member of Ralph’s support group.

Despite the optimistic title and some upbeat patient interviews, the program didn’t sugarcoat or patronize those of us in the trenches. After all, for all the studies and research and media attention, the known facts are pretty clear-cut: There’s no sure way to predict when/if MCI and early Alzheimer’s will develop into full-on Alzheimer’s; and there’s no cure despite the drugs and lifestyle changes that slow down the progression for some but not all patients.

It was like watching a car wreck; only the wreck involved my car. I couldn’t tear myself away.

Ralph watched all the way through too, but when I asked him what he thought he said he hated the program. His exact words were “It’s all crap.”

He didn’t want to identify with the people he saw on the screen, even those who seemed to me even less impaired than he is.

What probably put him off most—what frankly made me squirm sitting beside him—was the constant referral to both Alzheimer’s and MCI as dementia.

I have been squirming ever since. DEMENTIA. That’s how to describe Mrs. Rochester in Jane Eyre, the crazy woman in the attic, or my 96-year-old mother in her worst moments. Not Ralph, my careful, rational husband, a fact man who loves historic detail and likes nothing better than to analyze current events. It has never occurred to me to use that scary word dementia for Ralph’s condition…or only in anger and before his MCI diagnosis (when I so easily tossed around damning words that choke in my throat now).

It has taken weeks to steel myself to look into the definition of dementia in terms of MCI. The U.S. National Library of Medicine site lays out the parameters very clearly:

“Mild cognitive impairment (MCI) is the stage between normal forgetfulness due to aging and the development of dementia. People with MCI have mild problems with thinking and memory that do not interfere with daily activities. They are often aware of the forgetfulness. Not everyone with MCI develops dementia.

Symptoms of MCI include:

  • Difficulty doing more than one task at a time
  • Difficulty solving problems or making decisions
  • Forgetting recent events or conversations
  • Taking longer to do more difficult mental activities

Early symptoms of dementia can include:

  • Difficulty with tasks that take some thought, but that used to come easily, such as balancing a checkbook, playing games (such as bridge), and learning new information or routines
  • Getting lost on familiar routes
  • Language problems, such as trouble with the names of familiar objects
  • Losing interest in things previously enjoyed, flat mood
  • Misplacing items
  • Personality changes and loss of social skills, which can lead to inappropriate behaviors”

No surprise that Ralph hits the mark for all four symptoms of MCI.

As for symptoms of dementia, he’s a mixed bag. Fortunately, he does not exhibit any symptoms of moderate dementia so I didn’t reprint them. Comparing him to the early symptoms list I can say confidently that he has no language problems, at least less than I do, and that he doesn’t misplace items any more than he always has, although finding his razor in his sock drawer this morning was perplexing.

He can still drive his tractor and do carpentry repairs. But there’s no getting around that he can no longer do mental tasks that used to come easily–forget balancing a checkbook, he struggles following a movie. He is beginning to forget how to get to once familiar destinations, so I am going with him to get his teeth cleaned next week. And his personality has definitely changed. My “to the moon Alice” Ralph has transformed in an easygoing, appreciative, sentimental, even docile Ralph who is also withdrawn and fearful of anything outside his daily routine.

Although there’s no way to avoid checking Ralph’s behavior against the definition of dementia from now on, I am not ready to add dementia to the vocabulary of my marriage (a resistance I’ll explore in a future blog). And I don’t believe I have to.

Not yet.