Tag Archives: alzheimer’s studies

Taking Stock For Future Reference

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In preparation for Ralph taking part in testing of the new Merck anti-plague drug, our nurse at the Emory Brain Center  asked me to make a list for the nurse to show Ralph’s current baseline. Of course, I put it off (just as I often put off writing here because it means facing stuff I may not feel like facing). But now  the list is done and it seems worth sharing.

WHAT RALPH CONTINUES TO DO:

Make small repairs around the house when asked; Pick vegetables and do light farmwork when asked; Take his meds on his own from his filled weekly pillbox; Make his own cold breakfast and lunch; Make coffee as needed; Use the microwave; Buy beer at the convenience store; Feed the dogs daily; Drive around the farm in his truck to “walk” the dogs; Dress, bathe, shave etc on his own; Talk on the phone at length to his sister and oldest son; Attend his art class; Walk occasionally on a farm path circuit; Watch nightly news and Jeopardy over dinner; Listen to NPR on the radio; Read quality full length books of fiction and non-fiction; Use his credit card (as long as no tips are involved); Pay cash for small purchases; Cut his own hair ; Turn on the gas grill and change the gas canister when needed; Interact socially with people who visit or whom we visit; Fish from a dock; Clean fish he catches; Share stories from his childhood; Offer witty one-liners out of the blue; Analyze a situation/problem presented to him and show insight even though he forgets his analysis (and the problem) shortly afterwards

WHAT RALPH CAN’T DO ANYMORE:

Pay attention to business or financial matters—important since his professional life was all about real estate investing and managing; Use the stove; Use the grill although he does turn it on when I ask; Drive on his own except those places noted above or under duress and if I am there to give him directions; Use his boat; Hunt ; Go to movies—says he finds them “boring”; Watch narrative television dramas or comedies except on rare occasions; Listen to music on his own; Keep up with or show interest in family and friend activities; Remember details of relationship history with friends

 

WHAT RALPH MAY OR MAY NOT DO:

He may still be able to play guitar, but shows no interest; He says he can drive tractor (and was told it would be ok by Stephanie) but avoids doing so.; While he goes to art class, his output has greatly diminished; he spends most of his “painting” time sitting in his office smoking and listening to talk radio; He claims to take walks but I have not witnessed him walking

 

RALPH’S TEMPERAMENT CHANGES:

Extremely passive—used to be extremely assertive; Never gets angry—used to be hot tempered; Without curiosity—used to be extremely curious and factually knowledgeable ; Emotionally totally focused on his dogs; Less outgoing but more jolly most of the time.  

I kind of love having this information down in black and white and red and blue and green.  In a year or two or five, I will look back at what I recorded–whether with relief that the Merck pill has worked to keep Ralph at his current activity level or in bittersweet nostalgia for this time when the Can Dos on Ralph’s list are several lines  longer than the Can’t Dos and Maybes list combined. May it stay this way for as long as possible.

 

P.S. From Ralph: What Study?

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P.S.        P.S.       P.S.     P.S.       P.S.    P.S.

So just yesterday I wrote about the study Ralph has agreed to participate in to study the effects of a new drug that might inhibit the plaque build up that leads to Alzheimer’s.

This morning over coffee we were having a perfectly normal discussion of the news, what to have for breakfast, etc., when I mentioned to Ralph that maybe I should cancel the check up appointment with his internist coming up this week since he would be getting checked so thoroughly through the study.

He looked at me and said, “What study?”

I have probably mentioned that Ralph’s memory issues have a silver lining, that he particularly forgets any moment that has produced anxiety or unpleasantness in his past—in other words any argument he has had with anyone, any disappointment he suffered in the past, any moments of tension or distress. Evidently, he has forgotten our trek last week because it was anxiety producing–which is fine because if he ultimately gets rejected he won’t care, and if he is accepted and has to go through more tests and appointments, each will fade as soon as it’s over.

Another win-win.

P.P.S.

For Ralph and me at this point in our journey, participating in trials and studies concerning Alzheimer’s is always win-win, but it is important to recognize that participation in experimental studies is a very personal decision and not the right decision for everyone or every situation. When Ralph was first diagnosed, we signed up for a trial that involved one and one exercises; it didn’t go well. Rick hated the questions and resented the process. Later, when he attempted an MRI for another possible study, we encountered the bb pellet problem. [For those who were curious, Ralph’s parents were very lax about firearms and allowed Ralph to have a BB rifle when he was around six. I picture him as a tow-headed little “woods booger,” as he called himself, in his favorite cowboy shirt–which he still has–chasing after birds and squirrels until he promptly shot himself in the tongue (luckily not the eye). His parents may or may not have taken him to a doctor, but nothing was done. Ralph forgot he had  the BB  until a dentist noticed it on an x-ray thirty years later. Rick said his mouth got quite hot during the MRI, and the pellet distorted how the MRI works, making it unreadable.] At some point I talked to a social worker who pointed out that no one should ever feel pressured to participate in studies and that health and emotional well-being come first.

 

Alzheimer’s Self-Tests–Hmmm

Tracking Changes, Uncategorized, , , , , , ,

 

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Scrolling on-line this morning, I was amazed at the number of do-it-yourself Alzheimer’s tests “available” and I use that word advisedly since it includes a positive implication that may not be true. I decided to try a couple of tests, in part to see how I’d do and in part to feel a tiny bit what Ralph must feel every time we visit the doctor’s office, not only facing his annual test to recalibrate his level of cognitive loss, but when he has to answer the short list of questions his doctor not so subtly slips in during our interim six month check up.

I took the SAGE (Self-Administered Gero-Cognitive Exam), developed by the Ohio State University Wexner Medical Center plus a test developed by the Department of Veterans affairs that Dr. Oz promotes .

A disclaimer–I am not a fan of Dr. Oz. Maybe that’s why I scored only 59% on the Dr. Oz test the first time I took it. Or maybe it’s because I kind of cheated: I didn’t have the stopwatch the test required so I had to guess how many animals I could name in a minute (full disclosure: while writing this, I had to go back to the site-twice- to see just how long I was supposed to have, thirty seconds? Ninety seconds?).

Of course Dr. Oz invited me to take the test again and also to buy some memory aid products. I nixed the products but I did take the test again, raising my score 71%. This time round, I also realized I had not properly memorized the five (or was it four, I can’t remember) items I was supposed to remember. Tie was an item after all. But I still couldn’t, and can’t, remember the last one.

Taking the Sage test was more interesting because I found myself uneasy and unsure how to answer some of the subjective, non-memory introductory questions. Do I have balance problems? Well, I don’t think so, but I am accident prone, having had two sidewalk mishaps in the last three years—once tripping on my shoelace and once slipping on ice—so maybe I’m kidding myself. Have I had changes in my personality? Yes, and yes, also to whether I have “more difficulties doing everyday activities due to thinking problems”. I like to blame those yeses on my anxiety regarding Ralph, but then again…. My palms were sweating before I even started.

As for the SAGE test itself, I got the first 10 out of 11 questions right effortlessly. But on number 11 I did the unthinkable—I didn’t follow the directions! My shape was right but I missed a step, and as I recall from ninth grade Algebra (or was it Geometry?), skipping the step is bad, bad, bad!

So the good news is that while I didn’t exactly ace my exams, I don’t have Alzheimer’s. The bad new is that if I got this tense taking these tests on a whim, what must it feel like for Ralph taking much more complicated, exhausting tests knowing how much is at stake. Sometimes I get so wrapped up in my own anxiety/resentment/struggles that I lose sight of the existential crisis he faces daily, hourly even, every time he grasps to remember and comes up empty handed.

“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

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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.

Canine Caregiving for Dementia Guide

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ralph and dogs

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.

 

 

 

 

Money Talks….

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According to a recent article in the New York Times: “As Cognition Slips, Financial Skills Are Often the First to Go.”  financial cognition is one of the first skills to go. According to Ralph: Money talks, bullshit walks.

When we first met, Ralph was something of a hippie entrepreneur. By the time he was thirty, he’d dropped the hippie part and considered himself a real estate entrepreneur—buying, renovating, managing and leveraging small apartment buildings–while I pursued my less than financially lucrative writing ambitions. Then his longtime bookkeeper quit suddenly and I had to take over the day-to-day bookkeeping. At the time I didn’t want to take on that responsibility, but in retrospect I am really glad I did. When I needed to liquidate the business two years ago, I knew the basics, like where the checking accounts were, but also the larger framework of how to run the business the way Ralph did. He remained the one who made the serious financial decisions, but I watched and learned.

And what I learned was to be obsessively careful. I used to tease him about the way he analyzed and re-analyzed every business decision, going over and over the worst case and best case scenarios, ‘running the numbers’ as he called it. So what struck me in reading the Times article was this line: “It may become more difficult for people to identify the risks in a particular investment, and they may focus too much on the benefits.” Ralph’s last three investments were frankly terrible.

Luckily those were his last investments. Unfortunately, they were his last investments because Ralph’s follow-through was also going. Ralph always took great pride in being “a closer.” So what I saw as his flagging interest in following through caught my eye as a problem sooner than his forgetfulness. I realize now that he probably no longer trusted his own judgment. He went through the motions, but he had checked out at least a year before his diagnosis. He sat in his office reading catalogs and magazines while letting his assistant and me run things. Fortunately, he’d done such a good job training us that we did fine for awhile.

We may have lost some money due to Ralph’s MCI, but I am kind of glad Ralph had that time to loosen his hold on the business. A grace period.

Because once we had the official diagnosis of Mild Cognitive Impairment, there was no pretending. And by the time I decided to sell the business, Ralph’s impairment was greater while his interest in anything financial had dropped to zero. The man who loved to spend days doing profit loss projections can no longer figure the tip on a restaurant tab.

“In The Zone”

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Ralph took his first art class in twenty years this afternoon.

He agreed to go only because our physician’s assistant Stephanie gave him a “written prescription” to take art lessons during our last visit to the Memory Center at Emory.

Ralph has always been a natural draftsman, and in his thirties he took courses from a couple of relatively renowned artist/teachers who gave him real encouragement. Then life got in the way and he didn’t stick to the art. He always said he’d take up the painting again once he retired. But that was before he was diagnosed with (not so) Mild Cognitive Impairment and he has not touched a paintbrush since.

So when he told Stephanie that he had his paints all set up in his office in the barn and was going to paint soon once he had things organized, I probably rolled my eyes. He does go to his office to “straighten and organize” most days, but really he sits and smokes and talks to the dog. I am glad he has somewhere to go and be comfortable. I certainly don’t care that the office will never be organized, but I do fear and sense the mental atrophy setting in.

Like everyone involved with dementia and cognitive issues, I am aware of the benefits of art therapy. [For those interested there is a documentary, “I Remember Better When I Paint” worth checking out as well as numerous articles and essays to be read on-line.] But Stephanie and I knew better than to push that angle with Ralph, who shies away from that word “therapy”.

Instead Stephanie blamed human nature, explaining in the nicest way possible that if Ralph didn’t take an actual class he would never start to paint on his own. She told him that he needed the class to jumpstart and structure his time. (She also prescribed a weekly night out for dinner or a movie, but following that direction has proven harder for reasons I’ll explore another time.) What he would hear as nagging from my mouth became sound advice  when it came to Ralph from an authority figure who also happens to be attractive and charming.

Fortunately, as Stephanie agreed, Ralph doesn’t need to be in a special class for the cognitively impaired. He just needs a class period: A time and place on his schedule; plus an environment with other students good enough that he takes the class seriously but not so good that they intimidate him. Not an easy situation to find in a small town, but two friends separately recommended the same art teacher who has been working with a group of adult students for several years. We talked. I assured her that Ralph was not a beginner, but I also felt obligated to acknowledge Ralph’s M.C.I. just in case something came up. I assured her that no one in the class would be able to tell he had a memory problem. I could hear her hesitation, but she agreed to let him in.

Since I told him that I’d signed him up he has asked with anxious frequency what day the class was, where it was, how long it was, what he had to take to the class, who would be at the class and how good were they at painting.

He has not been asking with enthusiasm. His has been a litany of fears. On the drive to the class this afternoon—“Where is it again,” a moment of silence, “Where is it again?”—Ralph was such a bundle of nerves that I almost gave in and said he didn’t have to go. The gray, drizzly cold didn’t help; bad weather is always an excuse for Ralph these days.

But we made it to the parking lot and he did get out of the car with his supplies.

I sat with my motor running as he walked in, pretending to take a call on the cell phone. By then I was a bundle of nerves myself, the same nerves I remember suffering when each of my kids faced the first day of school. I watched through the window as he trooped into the classroom and walked up to the teacher to introduce himself.

“So how was it?” I asked when he came out two hours later.

I could tell he was in a good mood, but I was not expecting what a good mood.

“Once I got started I was in the zone,” he said and showed me the painting he’s begun. He can’t wait to go back…

How happy-making to offer a success story for a change.

OOPS

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So I was about to write about a little snafu caused by Ralph’s memory lapse the other day but then I had my own cognitive issue.

We received a less than friendly email from a neighbor who has been complaining about various issues. In the past when he has made requests we have always complied. This time he was mad because a dumpster on our rental property was not emptied on New Years Day. The email was sent to our business email address and to Michael, the guy who manages the property since we “retired”. In the past we have always bent over backwards to make him happy—hiring people to police the grounds, adding an extra dumpster pick-up day, acquiescing to his zoning requests to put in a swimming pool and build a wall. This time I was admittedly annoyed at the snotty tone of his letter and emailed Michael that I now wished we hadn’t offered so much in the past. Unfortunately I was emailing from my phone, was slightly distracted, and hit “reply all” by mistake.

The neighbor was not amused.

And I can’t blame my screw up on cognitive impairment. Wait, maybe I can.

As followers may have noticed I haven’t written here for a few weeks. Since Ralph was  functioning more or less as usual, I took a short hiatus, taking care of the essentials but not thinking quite so much about our situation–a small case of burnout.  And I am not alone.  Supposedly caregivers of Alzheimer’s spouses have a higher rate of anxiety that could impair cognition. http://www.alz.org/care/alzheimers-dementia-caregiver-stress-burnout.asp

The hiatus is over and I am feeling calmer about my life, but don’t tell anyone. MCI and Early Alzheimer’s have given Ralph his built-in excuse for life’s big and little screw ups . I need my own.