Category Archives: Support and Research

“Memory Loss Associated With Alzheimer’s Reversed For The First Time”–If It Sounds Too Good To Be True….

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A friend sent me a tantalizing press release concerning a study run by UCLA and the Buck Institute, which claims that a “Small trial by UCLA and Buck Institute succeeds using ‘systems approach’ to memory disorders.” (Note direct quotes from the press release will appear here in italics.)

Wow, a cure for memory disorder! In amazement, I stop reading.

So has UCLA had the major breakthrough we’ve all been waiting for and were told was years away?

And what is a systems approach?

I start reading again until I understand that what was involved was a “36-point therapeutic program that involves comprehensive diet changes, brain stimulation, exercise, sleep optimization, specific pharmaceuticals and vitamins, and multiple additional steps that affect brain chemistry.” This program was devised by Dr. Dale Bredesen of the UCLA Mary S. Easton Center for Alzheimer’s Disease Research and the Buck Institute for Research on Aging.

The real science involved here sounds controversial and is far beyond my ability to analyze. Most of us have been told that Alzheimer’s is caused by sticky plaque build up in the brain but Dr. Bredesen conducted a study that found “that Alzheimer’s stems from an imbalance in nerve cell signaling.” Therefore Bredesen says that “a broader-based therapeutic approach, rather than a single drug that aims at a single target, may be feasible and potentially more effective for the treatment of cognitive decline due to Alzheimer’s.”

And golly, 90% of those in the USCLA study “displayed subjective or objective improvement in their memories beginning within three to six months.”

A problem is that that there were only ten patients in the study. Having just read Thinking Fast and Slow by Daniel Kahneman, I am hypersensitive to misleading studies in general and studies with overly small pools of participants in particular. Ten patients is a pretty small pool.

Then there are the  “patients” themselves as described in the press release:

Patient 1 had two years of progressive memory loss. She was considering quitting her job, which involved analyzing data and writing reports, she got disoriented driving, and she mixed up the names of her pets.

Patient 2 kept forgetting once-familiar faces at work, forgot his gym locker combination and had to have his assistants constantly remind him of his work schedule.

Patient 3’s memory was so bad that she used an iPad to record everything, then forgot her password.

These three patients sound like Ralph at least five years ago, back when we were still joking about his memory slips. Actually they sound a lot like me right now.

Basically the pool was made up of “patients with memory loss associated with Alzheimer’s disease, amnestic mild cognitive impairment or subjective cognitive impairment (in which the patient reports cognitive problems.” No surprise that the “One patient who had been diagnosed with late stage Alzheimer’s did not improve.”

But still, that most did improve is good news.

The bigger problem for me is the breadth and intensity of demands from participants (and those who care for them). Bredesen’s program requirements include:

  • eliminating all simple carbohydrates, gluten and processed food from her diet, and eating more vegetables, fruits and non-farmed fish
  • meditating twice a day and beginning yoga to reduce stress
  • sleeping seven to eight hours per night, up from four to five
  • taking melatonin, methylcobalamin, vitamin D3, fish oil and coenzyme Q10 each day
  • optimizing oral hygiene using an electric flosser and electric toothbrush
  • reinstating hormone replacement therapy, which had previously been discontinued
  • fasting for a minimum of 12 hours between dinner and breakfast, and for a minimum of three hours between dinner and bedtime
  • exercising for a minimum of 30 minutes, four to six days per week

Bredesen said the program’s downsides are its complexity and that the burden falls on patients and caregivers to follow it. In the study, none of the patients was able to stick to the entire protocol. Their most common complaints were the diet and lifestyle changes, and having to take multiple pills each day.

The good news, though, said Bredesen, are the side effects: “It is noteworthy that the major side effects of this therapeutic system are improved health and an improved body mass index, a stark contrast to the side effects of many drugs.”

Just reading this explanation exhausted me. Call me lazy, call me selfish, but I can’t see Ralph and me signing up for this regimen any time soon.

Alzheimer’s Cost-to Women-A New Study

I received the following press release from Emory University  this week:

Study finds women bear heavier economic burden for Alzheimer’s care

ATLANTA – An Emory study published today in the journal Women’s Health Issues finds women bear six times the cost of Alzheimer’s disease (AD) care, per capita, that men do. The authors say the greater cost burden is largely due to the informal care women deliver to family members with AD.

Alzheimer’s disease is a progressive brain disorder that slowly destroys memory and thinking skills and is ultimately fatal. It is also one of the most expensive diseases in our country—more costly than heart disease or cancer.

Authors Zhou Yang, PhD, assistant professor in Emory’s Rollins School of Public Health, and Allan Levey, MD, chair of the Department of Neurology and director of the Emory Alzheimer’s Disease Research Center, used a lifetime perspective to calculate AD costs and looked at three factors: the probability of developing the disease, the disease’s duration, and the formal and informal care needed for the AD patient.

“There is strong evidence that women face higher risks of being affected by Alzheimer’s as either patients or informal caregivers,” says Yang. “It is critical to develop public policy interventions aimed at curing or slowing the progress of the disease to benefit the health and economic welfare of women everywhere.”

Yang and Levey used 2000-2010 data from the nationally representative Medicare Current Beneficiary Survey to calculate costs for clinical care paid by Medicare, long-term-care costs paid by Medicaid, out-of-pocket costs for care at home, and the costs of informal, uncompensated costs.

They found women AD patients have 16% higher Medicare costs and 70% higher Medicaid costs than male patients over their lifetime. And the greatest gender difference was in the cost of uncompensated informal care, where a female family member of a male AD patient will bear a burden six times greater than a male family member of a female AD patient.

Yang and Levey initiated the study in coordination with WomenAgainstAlzheimer’s, an advocacy group committed to stopping Alzheimer’s by 2020.

“This is the first study of its kind to document the disparate economic impact of Alzheimer’s on Women as patients and caregivers and the concomitant burden on our public health systems,” said Jill Lesser, President, WomenAgainstAlzheimer’s. “It illustrates the urgent need to reform reimbursement policies for Medicare, Medicaid and long-term care and alleviate the public and private impact of this tragic disease that burdens families for decades.”

I have nothing to add except “Duh?”

No, that’s not fair. I am not surprised that a study proves that women are impacted more often and that their financial costs are heavier. BUT I also sometimes worry that men who care for their wives get short shrift in discussions of Alzheimer’s. And I don’t want to buy into another case of women as victims mentality–mainly because feeling like a victim is less useful than feeling in control.

Beside, in support groups, I am always amazed at the devotion and patience of the men attending. They are less comfortable with the talky format but they are also trying so damn hard and have often given up so much.

So, even though this information rings familiar bells in my brain, there is plenty of pain to go around and alleviate….

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.

Canine Caregiving for Dementia Guide

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Given how much I talk about Ralph and his dogs, I was glad to happen across this informational site about canine caregivers at Rover.com. Much of the article covers familiar territory about dementia and pets. But the list of where to find canine-caregivers and the information about what a canine-caregiver can offer may prove valuable.

I would love to get our puppy trained as a caregiver, and she is showing signs that she has the patience and intelligence to be a wonderful companion. But if she’s not up to the task of caregiving, I will definitely look into one of these resources down the road.

 

 

 

 

Reminders of Alzheimer’s Reality

This must be my week for videos. A few days ago the leader of my local support group sent this three-minute video About Alzheimer’s, from the Alzheimer’s Site blog,  tracing the changes in a person’s brain during the course of Alzheimer’s.

The film follows the areas of brain cells that die off as plaque and tangles increase, not information I didn’t know but stated/shown with a matter of fact approach I find refreshing. While I have to say that Ralph’s case does not follow the pattern in the film exactly–his memory for language has not been the first area compromised as the film suggests—the visualization and concise explanation are useful. I can imagine returning to watch the video from time to time to keep me grounded in the scientific reality I sometimes (perhaps willfully) forget.

Meanwhile at the group meeting yesterday, I was reminded just how different everyone’s situation with dementia is, and how lucky I am, so far. I attend rarely because the meeting conflicts with my Thursday morning Pilates class—and frankly I depend on that 45 minutes of intense concentration on breathing and stretching and keeping my shoulders out of my ears—but class was cancelled at the last minute and I was already walking out the door so why not.

It was a good meeting. Honest give-and-take, practical information. In the other group, all married couples, most of the spouses are still borderline Mild Cognitive Impairment like Ralph, but in this group the caregivers seem to be dealing with parents and spouses who are at later stages. One woman, “Jane,” mentioned that her husband has recently had to be moved into a care facility

When the meeting ended, she and I began to chat. It turns out her husband is 67, Ralph’s age. Okay, I thought, he must have started having symptoms earlier. Then she said he had been diagnosed exactly two years ago. Around when Ralph got his testing results.

I teared up for the first time in two years. How lucky Ralph and I are compared to others struggling with Alzheimer’s. And how cocky I have been in my fool’s paradise. Thanks to Namenda and Donepezil (plus a generic version of  Lexapro for anxiety), Ralph is holding more or less steady, but suddenly the reality of these videos and the stark contrast between Ralph and Jane’s rapidly deteriorating husband brought me up short: This is real life and Alzheimer’s isn’t going away.

So this when morning Ralph turned to me and said, “Coffee in bed and NPR, what paradise,”  I agreed. I’ll live in our fool’s paradise as long as we can.

Dementia of the Preoccupied: How Multitasking and Being Attached to Technology 24/7 is Creating A Dementia Effect on Society

I read this just after getting home from the restaurant where I’d left my credit card after paying because I was preoccupied with making sure Ralph was at ease. We’d been dining with another couple. The woman knows about Ralph’s condition, I wasn’t sure about her husband. Ralph began to repeat himself a bit and I became overly convivial. I knew Ralph was fading since it was after eight. But it took forever to get the check and while I was writing in the tip, our friends introduced Ralph to acquaintances at the next table. One was a man who once contributed, sight unseen, to a non-profit organization Ralph headed. Ralph became confused and anxious about how they knew each other, and I became anxious to get out of there. When our waitress came running with the credit card a few minutes later I was embarrassed. But I can’t say I was surprised.
So this article really hits home.

Going Gentle Into That Good Night

lifestyle dementia technology multitaskingNeuroscientist and author Frances Jensen, in describing what normal life has become for most of society, calls what happens neurologically dementia of the preoccupied.

It’s an apt term. It’s also the brain mimicking dementia symptoms, because our brains aren’t wired to do continual rapid attention/task shifts nor is it wired to multitask.

Despite a lot of evidence that a 24/7 connection to technology (produces a neurological condition, which includes changes to the structure of the brain, known as digital dementia) and multitasking are not only damaging the brain long-term, but they also reduce productivity dramatically (the effect neurologically is exactly the same as staying awake for 24 hours or more or smoking marijuana), a 24/7 connection to technology and multitasking are still seen as badges of honor and are highly prized both professionally and personally.

The problem with multitasking is that we can’t really multitask. Neurologically, we are wired to focus all our…

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