Memory can be wonderful and cruel all at once. It’s been almost a year since Dad died, and I’ve discovered that it takes a year to fully recover from the exhaustion of caregiving. It takes a year to recover fully enough to crave the chance to do it a second time over—to do it right [...]
Are We Ever Ready for Death?
On Saturday, August 21, 2010, God took Dad home. God did not wait until we were ready for this. He waited until Heaven couldn’t stand Dad’s absence any longer. I’m posting this video about how we deal with death in our current culture because I think our attitude of denial in the face of death [...]
As I was sitting listening to our various conversations around the table, something struck me as different this year. We’re all hovering around 50—give or take a couple years—and the aging process is beginning to take a more prominent seat at the table. Not only do conversation topics start with the premise of aging: declining health, the cost of health insurance, etc, but it seems that no matter what the topic, it eventually touches on something to do with aging.
Like one friend who just got a puppy. We talked about puppy breath and poop-smeared clothing and keeping the dog Parvo-free. But then everyone admits that our dogs provide motivation to keep body and mind healthy: “If it weren’t for those daily dog walks, I would die of stress and/or flab.” The dog replaces natural motivation that goes out the window with age.
As for noticing memory loss… There wasn’t one young woman around the table that didn’t show some sign of memory loss, as these conversation snippets illustrate:
First woman: “There’s a new restaurant there? How long has it been there?”
Second woman: “Oh, it’s pretty new. Only a few months.”
Third woman: “A couple weeks, actually.”
First woman: “I love the sunflowers theme of this party!”
Second woman: “I loved last year’s theme: birds.”
Me, thinking to myself, there was a theme last year? These parties have a theme?
My favorite was the conversation in which one mom asked another, “Were your babies born bald?” The other mom thinks and says, “Am I a bad mom if I don’t remember?” The first mom says “My son was two and still bald.” She then searches her phone for a photo and produces one of her son, aged eighteen months, with a full head of hair.
And so it went.
It’s undeniable. We’re aging.
The problem with this year’s party, however, was not that we are showing signs of aging, but that I am becoming more and more attuned to the “sings” whenever we get together. My focus is the problem. We had a good time, but what am I writing about here? Our declining selves!
My brother-in-law told me last Saturday that he really enjoys this blog, except that it’s depressing. I told him I have the same conflict: I like writing these posts, but I’m afraid of making the deficits associated with aging the focus of this blog, and therefore am trying to distance myself from it. The reason for the title of this site, after all, was that I believe the attitude of the mind can win over the status of the brain. We can see signs of decline and choose to go that way, or we can see signs of continued learning and choose to keep learning.
Academy for the Aging Brain
With the above as background, I watched 60 Minutes Sunday night and learned of a fantastic tool for expanding the brain at any age. It’s called the Khan Academy—an online collection of short tutorials on all kinds of subjects including math, art history, biology. It all started with one guy tutoring his niece via Youtube uploads and has grown into a virtual academy used around the world with the purpose of providing free education for anyone, anywhere. Even Bill Gates has used it to educate his children.
I checked out khanacademy.com this morning and decided that I’m going to start watching one tutorial a day from now on. I’m going to learn stuff! Get mastery over calculus even! Onward and upward!
Here was my first tutorial–The Anatomy of a Neuron. One down, a few thousand to go!
I hope you find this a great tool for continued learning as well.
Here’s a fascinating animation superimposed over a lecture by psychiatrist and writer Iain McGilchrist on the two hemispheres of the brain. You may have to watch it 15 times to really get it.
I saw an old friend yesterday and we caught each other up on our families. I told him I recently lost my brother-in-law to brain cancer. He said he was about to lose his sister to the same. Then he shared how his sister—who has a month or two left to live and is tired as can be—blurted out a couple days ago that “There are just so many fun things left to do.” No self-pity; no giving up despite the shortness of time. Her mind is winning over her dying brain.
I am deeply humbled by this woman’s attitude. I want to think like her—to take what’s left in the glass and drink it! Yet here I am with probably years left to live, claiming to be getting the upper hand on this Alzheimer’s caregiving business, but feeling devoid of creative ideas for living, for laughing, for loving.
I need help making a list. I have to have a bunch of small stuff, because the big stuff like going to a play or out to dinner or hang gliding don’t work with both parents. I just want some ideas for bringing laughter into our home.
To start, here are some little things that make Mom laugh:
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Dancing for her with a feather boa.
Episodes of “I Love Lucy.”
Singing raucous songs loudly.
Pretending to eat her up.
Laughing babies (like this youtube one):
Here are some things that make Dad laugh:
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Pretending to eat him up.
Episodes of The Colbert Report.
Mom when she’s in a funny mood.
Exaggeration.
And here are some new things I’m going to try:
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Wear a fake mustache to the dinner table.
Spray whipped cream on Dad’s nose.
Put a fake snake or tarantula in the bathroom before Dad goes in.
Find a DVD of Victor Borge (like this youtube):
I’d love to hear your ideas, and I’ll leave you with this fun project: make a muppet like the one in the introductory picture above to add some fun to your Alzheimer’s caregiving.
Wait, here’s another idea: make these funky glasses. They crack everybody up!
We already know that a Mediterranean diet
helps stave off signs of dementia, but who wants to eat flavorless vegetables all the time?
If you think you have to sacrifice that deeply satisfying taste of butter and meat that you don’t typically get in a vegetable-rich diet, you don’t know Yum Sauce! This sauce is of Japanese origin and is full of protein, B-complex vitamins (B1, B3, B6, B12), and antioxidants—and best of all, it rounds out the flavor of anything you put it on with a “meatiness” that will satisfy the carnivore in you.
The dish pictured here is a prime example of a Mediterranean diet with a Japanese twist: a bed of baby spinach leaves with sauteed butternut squash, topped with Yum Sauce. Use this sauce on any steamed vegetable, over rice, or even on salad, and you’ll be on your way to fighting memory loss!
Yum Sauce
1/2 cup olive oil
1/2 cup water
1/2 cup nutritional yeast
3 packets of lemon or orange-flavored vitamin C
2 Tbsp soy sauce
4 Tbsp almond butter or peanut butter
2 cloves crushed garlic
1/2 cup black beans with juice
1 tsp cumin powder or curry powder
1 tsp white pepper
Throw everything in a blender and puree until smooth. Store in a refrigerator for up to one week.
The other night I attended an author’s reading of a first-time novel.
The main character in the novel is an immigrant computer programmer with terrible social skills trying to navigate his way around the American culture. His mistakes are endearing and a good mirror into the idiosyncrasies of American culture.
In the question and answer period of this reading, someone shot up their hand and asked if the main character suffered from Asperger’s Disease because of his mental brilliance and social ineptitude.
I think the author’s answer was something along the lines of “uh…” which mirrored my own reaction to the question. I’d smiled at the word Asperger’s and felt my stomach lurch at the word Disease. I’ve always thought of Asperger’s more as a cool color to be rather than a disease. Besides, why the need to label?
Why can’t we just accept a different package of assets and challenges in a person and enjoy their uniqueness rather than feel the need to cubbyhole folks into categories?
I just looked up the number of brain-related disorder labels and found a list of 50, among them “intermittent explosive disorder” which is basically the display of temper tantrums. Get real, folks!
What are labels & diagnoses? Something to shield other people from us as well as something to hide behind?
My recommendation for anyone suffering from excessive labeling (both giving and taking) is to read the book “You are Special” by Max Lucado. The interesting notion in this book is that positive labeling can be as harmful as negative labeling because it enslaves us to other people’s opinions. Freedom comes in checking in constantly with our Maker and knowing He loves us as we are.
Read and re-read and practice what you read.
Dare to be yourself.
The following describes the knowledge gained by Sharlene in the course of caring for both her parents with Alzheimer’s. It is not necessarily a reflection of my views, but I thought it good to publish the research of someone who has an insider’s view of Alzheimer’s dementia.
Sharlene Spalding is a naturopathic consultant in the village of Casco, ME. She is a former primary caregiver for two parents with AD. She holds a master’s degree in natural wellness. Sharlene is an excellent resource in natural healing and a hound dog when it comes to research. Because of what she knows now, she is committed to a pharmaceutical-free home that revolves around organic foods and herbs. You can visit her website at The Village Naturopath.
Read more
Because it’s Fall and crisp out and a good time to sit down to a good movie, I’m posting one of my favorite suggestions for a movie that deals with Alzheimer’s.
How To Kill Your Neighbor’s Dog is an unfortunate title for a great movie about self-centeredness and the cure for immaturity. The story centers around a playwright with writer’s block who must exit himself in order to find inspiration. Alzheimer’s isn’t the main theme of the movie, but it is present in the background, and the most lucidly-spoken scene in the movie is between the mother-in-law with Alzheimer’s and her brilliant, unhappy son-in-law.
Thought I’d pass it on.
Here is something frustrating about clinical trials of Alzheimer’s drugs: the FDA requires that such trials show an almost immediate improvement in memory tests of participants in order for the drug to get approval, disregarding improvement in other symptoms, and consequently derailing a possible cure for this dreaded disease.
Here is why I think there is an inherent problem with this guideline:
If you go the the Alzheimer’s Association website and take the interactive tour of a brain with Alzheimer’s (a fantastic tool!), you will notice that there is a general pattern to the progression of Alzheimer’s and its accompanying symptoms. Specifically, looking at slide 13 you will see that the first part of the brain to be affected by Alzheimer’s is the inner core where the hippocampus resides—that part of the brain responsible for short-term memory. From there, damage spreads outwards to the cortex of the various lobes. As the second image in slide 13 shows, the Frontal Cortex is affected in mid stages of Alzheimer’s. This area is responsible for attention, social skills and intelligence (or wit). It is associated with “personality.”
Now, if an effective drug for Alzheimer’s were to be developed, you would expect to see the least damaged areas respond first, followed by the most heavily damaged areas.
Such were the preliminary results of the clinical trial of Dimebon. In reading the various anecdotal accounts of the Dimebon trial (see Bob DeMarco’s piece on the Alzheimer’s Reading Room), the results seemed to show precisely this initial response: Alzheimer’s sufferers reported increased alertness, social skills, and wit. Here is a sample quote from the various testimonials:
The major drug companies are focusing on memory. Are they after the right target? I’ll tell you this, in weeks 6 through 18 in the Dimebon clinical trial my mother was more engaged with me, more aware of her surroundings, more interesting, and more like her “old” self then she had been in six years.
The least damaged areas of the brain were affected in the 12-week trial! Then the trial was stopped because the inner (most damaged) area of the brain showed no marked improvement.
Would it not make sense to glean from the trial that a logical reverse course of the disease was set in motion and to continue it to see if the pattern held?
Pfizer et al, could you give us another 12 weeks when studying Alzheimer’s please?!
[Note: this analysis is mine alone. It may not be true that the least affected areas would show improvement first]
e all know, even without reading research papers, that music has emotional benefit: it can excite and calm and induce a wonderfully cathartic weeping session. This applies whether you’re healthy or sick; whether you have Parkinson’s or autism or Alzheimer’s.
But studies have found that music can also be of cognitive benefit: it helps people remember things better.
What exactly does this mean, and what specifically does it mean for an Alzheimer’s patient? Does it mean that if you play the oldies station in the background all the time, your Mom will wake up one day and remember everything again?
Let’s look at the evidence:
First of all, "music" is a pretty general term. Are we talking about singing? Playing a guitar? Listening to Mozart? Listening to Bobby McFerrin’s improvisational jazz? Believe it or not, these are all different things.
According to a study reported by Time Magazine,("Music on the Brain")
Different networks of neurons are activated [in the brain], depending on whether a person is listening to music or playing an instrument, and whether or not the music involves lyrics.
In another study, quoted in Neuroscience for Kids,
researchers have recorded neuronal activity from the temporal lobe
of patients undergoing brain surgery for epilepsy. During this study, awake patients heard either a song by Mozart, a folk song or the theme from "Miami Vice". These different kinds of music had different effects on the neurons in the temporal lobe.
Also, from Time'“Music on the Brain”
Experimental Audiology in Germany has shown that intensive practice of an instrument leads to discernible enlargement of parts of the cerebral cortex
, the layer of gray matter most closely associated with higher brain function.
As you can see, different music affects different parts of the normal brain in different ways.
People are always studying the music-brain connection, trying to understand the mystery of it. There was a particular study done in 1993 that tried to see if music affected memory. The researchers used a song by Mozart for their experiment, and their results seemed to show that this composer’s music improved test-taking. This became widely known as The Mozart Effect, and people started playing Mozart to their unborn babies thinking it would give them a head start in learning.
Though later studies failed to duplicate the Mozart Effect (perhaps the only real effect is that Mozart helps relax the body right before a test), that original research sparked further research into music-as-memory-aid. A recent study, for example, found that Alzheimer’s patients can remember new information if it is sung to them much better than if it is spoken (as opposed to healthy people who can remember it equally well when sung as opposed to spoken).
We also know without reading studies that music helps trigger old memories. For example, when I hear the song "Dust in the Wind," I am immediately transported back to our family van as we drove across the country in 1977. I remember my oldest sister introducing this song to me, and how it resonated with the angst of my teenage years, etc. A whole cascade of memories brought on by a single song.
In a study reported by the Telegraph in 2009, researchers found that this recall effect is due to the fact that music is processed in the same area of the brain that forms vivid memories. They furthermore found that such memories appear to be immune to the ravages of Alzheimer’s. And this could lead to a unique kind of therapy:
Because memory for autobiographically important music seems to be spared in people with Alzheimer’s disease, …making a "soundtrack of someone’s life" before their mind is too damaged, and playing it back to them could help form a resistance to the disease.
Love the idea! Plus I have a variation on this idea from watching this next video of Bobby McFerrin (at a conference called "Notes and Neurons"), and from observing Mom as I play the piano. First, here’s Bobby:
What Bobby is doing here is getting the mind to go in a familiar direction (the pentatonic scale), then leaving an auditory blank and letting the mind fill it in. I mean, aside from jumping around, that's what he's doing. He’s giving the mind a puzzle to solve. He’s making the mind work. And working the mind is better than not working the mind if you want to keep it.
The next part of my idea came from playing the piano for Mom and watching her reaction. You should know Mom hasn’t spoken but a few words in a couple years, and she no longer sings intelligible tunes. You should also know that I don't play the piano. I used to when I was seven, but now my playing is reduced to guessing the notes with my right hand. I can play fast enough for the tune to be recognizable. Barely. Fortunately for Mom, the tune is always a hymn—something she is very familiar with. Unfortunately for Mom, I mangle the tune. And that's where the puzzle comes in.
See, when my finger's can't find the right note, Mom gets exasperated and sings it out loud to help me find the dang thing. I'm even wondering if this puzzle-solving exercise is a factor in Mom's recent awakening.
So here is my variation on the soundtrack idea. Try this exercise (for an Alzheimer’s patient) with the following video clip:
Play it once. It will probably be familiar to the listener already, but there are enough repetitions in this piece that parts of it will quickly become familiar if they aren’t already. Play the video again, but pause the video every so often. There are a ton of repeated theme snippets. Pause before a theme is repeated and see if the listener is prompted to supply the missing piece. If they do, you've got a good puzzle to use.
Then, if you do this with that "Life Playlist", you should be able to double the benefit in fighting that Alzheimer’s monster.
Related Posts:
Music and Caregiving—Pandora to the Rescue
Alzheimer’s and Music: Stimulating the Brain into Action
Related articles:
Posit Science Blog, Your Brain on Jazz
American Music Conference, Music and the Brain
On the way back from the errand, I was no longer me but a dim-witten twenty-something boy, and the SUV was now a semi truck. I climbed into the truck and found that it was in such a tight spot that it would be nearly impossible to get the monster out and down the alley onto the street. Nevertheless, I managed.
From there on, driving home was a brink-of-disaster experience. Sometimes the truck would jacknife and tilt over and I would dangle from the window and the truck would almost fall on top of me. But it would always right itself just in time to not kill me.
I kind of lost my way home, and at one point drove the truck into a military building. Somehow the folks there mistook me for a war hero and ordered a police escort to get me home. I was too dim-witted to correct them.
I drove home never quite feeling in control, yet chortling the whole way—the cops behind me scratching their heads as they swerved to follow. I arrived home and STILL no one would act on the fact that I was not OK.
When I awoke this morning I had to laugh at my mind’s lack of subtlety. That definitely sums up life right now. This caregiving business feels like you are always on the cusp of something that could kill but ends up leaving you alive. Barely.
I especially got a kick out of the war hero thing—a commentary on everyone always saying “You two sure are wonderful. You are going to get huge rewards in Heaven!”
Merrily merrily merrily merrilyLife is but a dream.
Another thing I got from Oliver Sacks’ book was a new notion of the power of music in dealing with dementia. My previous post on music and Alzheimer’s dealt exclusively with the notion of music as a memory stimulant. But Sacks’ book made me realize that music can be used as a tool to organize thought and action in the present—in the midst of neurological damage.
Yesterday as I lay down for a recuperative nap, I listened to a Scarlatti sonata in the background, and immediately got a visual sense of what goes on in the brain when music is played. The first picture that came to mind was an animation of DNA transcription: that funny little zipper head that makes a perfect copy of your DNA as it unzips the double helix. Nibble, nibble, nibble, copy, copy, copy. Then I saw Scarlatti’s sonata as doing the opposite with my thoughts: grabbing all the randomness in my mind and knitting it into a useful strand, or, if you want to be more esoteric, turning it into functional narrative.
In Sacks’ The Man Who Mistook His Wife for a Hat, the first clinical case is of a man who had lost all “sense of familiarity:” he could not recognize faces, body parts, food, clothing. Sacks wondered how the man (also a music professor) could function with this neurological deficit, so he went to visit him in his own home. It turned out the man had a very musical brain, and he functioned by humming a tune as he went about his daily business. He could eat as long as he sang, but if interrupted, would no longer recognize his food and would stop eating. He could dress by the same means. His wife would set out his clothes for the day, and he would only recognize them as clothes and dress himself once he started singing! His musical brain was compensating for his lost sense of recognition.
And now I remember a funny little entry by Bob Demarco on the Alzheimer’s Reading Room that is seriously brilliant. He talks about using music to stimulate his mother into action:
My sister was shocked when I told her on the phone that I finally “convinced” my mother to drink prune juice after years of trying and failure. Joanne was here and saw my mother refusing to drink and calling the prune juice poison. It was only after I introduced the “prune juice song” that my mother starting drinking the juice every day and the dreaded Poop-E problem was solved.
I also have the pee song, the poop song, and a long list of songs soon to be number one hits.
This is exactly what Oliver Sacks would have recommended! Music and Alzheimer’s (and Parkinson’s and most other dementias): stimulating the mind into action.
See also: Alzheimer’s and Music: Stimulating the Brain to Remember
After writing my last post regarding the stress of caregiving, I had to drive somewhere, and in the course of the short trip, I caught a clip of a Haydn symphony on the radio. I don’t know how, but there are sections in there that make me feel as though this exhausted, shriveling heart of mine is actually quite expansive and able not only to cope, but to bring beauty out of the brokenness around me. You know how sometimes you see a scene or a photograph that makes you certain that the universe is true and right and good? Well, music does that, but with thrice the emotion. Music can rewire a frazzled or finished outlook into one of hope. And hope can take you a looooooong way down a very dark road.
All to say that music—in addition to being a fantastic tool for treating Alzheimer's—is a very inexpensive way to get your groove back when you’re done in from caregiving. Or from living a regular life-is-pain-highness kind of life.
To prove this, I'm giving you a little tool in this post that some people may not know about. The tool is called Pandora—an internet service that lets you create your own radio station online.
The extra cool thing about this service is that you can create multiple radio stations, all with different moods—colored by different genres or artists—to suit your changing needs. Sometimes I don't even know what my need is or what it is that will trigger a brighter outlook, so having multiple "moods" to choose from is very useful.
Cutting to the chase, here are four stations I created to get you started. Click on any one of them and follow instructions to log into Pandora. From there, you can tweak the station by "adding variety" (a specific music piece or musician) to the station. You can also "thumbs up" or "thumbs down" any piece that you hear, and the station will remember to pick similar music or not to play that piece in the future. Talk about tailored just for you!
So here goes—four different flavors for your listening pleasure:
Jazz. You know, the good stuff with Stan Getz and Louis Armstrong and Bobby McFerrin and Michael Buble…
This is a fusion of old hymns and contemporary Christian pop. Nice, especially for Sunday mornings.
My personal favorite: spicy Latin mix. Makes you want to jiggle and dance and go crazy! A great stress-reliever.
Classical is music to transport the soul.
A couple more tips: if you want to play this music off your sound system without leaving the kitchen table, you can buy a $4 wireless FM transmitter and send the station to your main tuner. You can also "send the station" to the radio that sits on your mother's side table in the bedroom while you’re working on the laptop in the kitchen. Just a whole lot of things you can do with Pandora!
Do have fun, and come back and post a station of your own creation if you dare!
This weekend I picked up and devoured Dr. Oliver Sacks’ The Man Who Mistook His Wife for a Hat—a fascinating collection of clinical tales of neurological aberrations accompanied by philosophical and social observations regarding the people affected by these aberrations.
One of the first things that hit me as I read these tales was remorse over my inadequate caregiving of Dad in the past three years. I mean, the very first case in the book reminded me very much of Dad—his inability to tell the difference between his foot and his shoe; to interpret a picture or the furniture layout of any room; to distinguish between his body and a chair across the room. But whereas Dr. Sacks’ response to these aberrations was fascination, interest, and kindness, mine was a struggle against exasperation, irritability, and impatience.
Why couldn’t I marvel at (instead shake my head at) Dad’s description of his back pain as an imaginary horizontal tube about a foot in front of his abdomen? Why did I only nod in shame when doctors asked, “Is your father’s mentation… always… this… shot?” instead of pushing the observation beyond the superficial to the interesting? If I’d only read this book or studied neurology before taking care of Dad! I feel like a parent looking back on her inadequate parenting skills and feeling remorse over the damage it may have caused.
Dr. Sacks laments the tendency of neurology to focus on “deficits,” leaving the soul out of the doctor’s concern. This echoed my own feelings expressed in the post Regarding Disabilities and Questionnaires. We are so concerned in medicine and social services to define what’s wrong with the patient that we miss seeing the desperate starvation in front of our eyes: the individual’s need for affirmation—for having someone notice what’s right with them. Thus, the simplest of all medicines or disability benefits is left completely out of the picture in professional delineation of care: making use of what’s left of the damaged self to make positive human connections.
From his chapter, “The President’s Speech,” I learned one way to use what’s left of Mom’s mind to connect more effectively with her. Like the patients in the aphasiac ward, Mom too has lost all language while retaining extraordinary function in the area of intonation, body language, inflection, and facial expression. I’ve always sensed that she could “read our body language.” Dr. Sacks’ confirmation of this ability has made me more aware of how I use those meta-verbal cues in communicating with Mom. The smile I get in response is more valuable than any drug-induced ability to tell what date it is.
One of the most fascinating passages in Dr. Sack’s book tells of a man with Tourett’s who, when given Haldol in the smallest of doses, ceased to exhibit the excesses of Tourett’s and became disastrously dulled—both physically and mentally—causing him as much distress as had his Tourett’s dysfunction. It took three months of counseling and “preparation for healing” before the man was again willing to try a tiny dose of Haldol. As Dr. Sacks put it, “The effects of Haldol here were miraculous—but only became so when a miracle was allowed.” Scandalous! Was Dr. Sacks milking the placebo effect for all its worth? I’ve always wondered why doctors don’t deliberately incorporate the placebo effect into the real medication to multiply its effect. Now I know: some do (what’s wrong with spending three months preparing a patient for healing?).
It’s easy to see why Dr. Sacks is considered an exentric. His methods go beyond the cut and dry. They touch the soul. I think I like this.
We are continually hearing that Medicare is going to go bankrupt by mid-century thanks to the skyrocketing costs of an aging population in need of prescription drugs and dementia care.
Medicare Part D costs to the government in 2010 were $62 billion and are projected to climb to $150 billion by 2019. And Medicare costs for Alzheimer’s care will increase more than 600 percent, from $88 billion today to $627 billion in 2050.
Here is a double-barreled solution to the costs of Medicare Part D and Alzheimer’s care: replace prescription drugs with equally effective placebos and employ mildly-cognitively-impaired individuals as healthcare enhancement agents.
This is not a joke. Here is why this would work and save the federal government billions:
Regarding Placebos
Placebos—if delivered properly—could potentially be more effective and considerably less costly than many current prescription drugs.
Here is an example of an experiment with placebos for a “purely physical ailment”:
One group was simply put on a waiting list; researchers know that some patients get better just because they sign up for a trial. Another group received placebo treatment from a clinician who declined to engage in small talk. Volunteers in the third group got the same sham treatment from a clinician who asked them questions about symptoms, outlined the causes of [their ailment], and displayed optimism about their condition.
Not surprisingly, the health of those in the third group improved most. In fact, just by participating in the trial, volunteers in this high-interaction group got as much relief as did people taking the two leading prescription drugs for IBS. And the benefits of their bogus treatment persisted for weeks afterward, contrary to the belief—widespread in the pharmaceutical industry—that the placebo response is short-lived.
It has been found that placebos can sometimes work even better than the leading prescription drug for any given disease, with certain factors contributing to their effectiveness:
Yellow pills make the most effective antidepressants, like little doses of pharmaceutical sunshine. Red pills can give you a more stimulating kick. Wake up, Neo. The color green reduces anxiety, adding more chill to the pill. White tablets—particularly those labeled “antacid”—are superior for soothing ulcers, even when they contain nothing but lactose. More is better, scientists say. Placebos taken four times a day deliver greater relief than those taken twice daily. Branding matters. Placebos stamped or packaged with widely recognized trademarks are more effective than “generic” placebos. Clever names can add a placebo boost to the physiological punch in real drugs. Viagra implies both vitality and an unstoppable Niagara of sexy.
If you’re thinking that the suggestion of using placebos is unethical, check out this study:
“Not only did we make it absolutely clear that these pills had no active ingredient and were made from inert substances, but we actually had ‘placebo’ printed on the bottle,” says Kaptchuk. “We told the patients that they didn’t have to even believe in the placebo effect. Just take the pills.”
The participants were monitored for three weeks and, at the end of the trial, 59% of the patients given the placebo reported ample symptom improvement as compared to 35% of the control group. Furthermore, participants who took the placebo had rates of improvement about equal to the effects of the most powerful IBS drugs.
Deception is unethical. Honesty is not. If there is a joke it’s in the current medical practice of prescribing expensive drugs that are sold without the most important ingredient that made them effective in the trials—the same ingredient that makes placebos effective.
As we would all imagine, the most important factor in the effectiveness of placebos is the doctor’s bedside manner. That is, the presence of compassion in the treatment of an ailment.
Regarding a Cognitively Impaired Workforce
The double-barreled solution in employing people with mild dementia as healthcare enhancement agents is that we would save on prescription drugs, hospital recovery times, and also be assigning purpose to people with mild cognitive impairment. Folks whose initial downward slope in the aging process is a bit early are not an “unproductive force in the economy.” There is richness of intellect, creativity, and compassion that could be tapped rather than stomped on per our current dementia stigmatization.
There was a time when people with physical disabilities couldn’t get jobs. But we’ve come a long way in learning of the tremendous contribution that the disabled can give, and have accommodated the workplace for such individuals with ramps and wider doorways and elevators in order to reap this benefit. Why not do the same for MCI individuals? Why are we instead discarding this tremendous resource?
In reading blogs of people with early-onset Alzheimer’s, one of the biggest stresses for both the sufferer and the government is issuance of social security disability benefits. Why not offer employment rather than cash benefits? If compassion at the bedside of a sick person dramatically speeds the healing process, think of the savings accrued by employing love & joy-givers in hospitals, clinics, nursing homes?
In his book The Gift of Pain, Dr. Brand lists the factors that enhance pain and prolong the healing process: fear, anger, guilt, loneliness, boredom, helplessness. He then describes how perfectly suited many institutions are in promoting these feelings with their sterile settings, uncommunicative doctors and nurses, boring surroundings (and now that nurses spend all their time at computer terminals per our new streamlining guidelines, these factors are further compounded). Healthcare institutions could cut their costs by employing people to:
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Design and paint interesting scenes on hospital ceilings
Play instruments in institutional corridors (not just harps, please!)
Make dolls for nursing home patients
Read aloud to patients, or simply visit
Reupholster institutional furniture with fun fabrics
Take certified dogs into institutions for cheery visits
The savings in dollars would be compounded all around, and the savings in dignity for all healthcare users a welcome change for our society.
This week I started wearing the monovision contact lens that I got three years ago. This is the lens that you wear in one eye to correct for reading while leaving the other eye free to focus on things in the distance.
I tried this lens years ago but found it unacceptable. Everything was at once blurry and sharp, and I couldn’t tolerate the tiniest bit of blur in my vision.
I realized it was a mental adjustment—I would have to learn to choose the sharpness of one eye over the blurriness of the other at any distance until all I saw was sharpness. But I was impatient and gave up on the adjustment period, resorting instead to donning and doffing reading glasses when in need.
Now my close-up vision has gotten so bad that when I tried the monovision lens this time, my mind was quite happy to accept the gift of semi-sharpness without the need to scout around for glasses. It took a very short time, in fact, for my brain to adjust and see all things in focus at all distances.
Remarkable how the brain can do that.
I learned a similar lesson in life with the attitude of gratitude. I was going through a very stressful, heart-rending period when nothing seemed to be “working” for me. One day I plopped down on the floor and began to say “thank you” for every part of my life. It was a turning point in my stress level. I began to see not problems but challenges; not curses but blessings. And what a difference it made!
Alzheimer’s and other devastating diseases, I’m noticing, can be lenses that change the way we see life; they change what we think is important; they bring into focal clarity the gift of family, friends, community, connection. I’m amazed as I surf the blogs written by sufferers and caregivers to see the softness that takes over when anger ends. I’m amazed, for example, with Michael J. Fox’s attitude toward his Parkinson’s, calling it a “liberating” gift. I’m touched by the may bloggers who share of the immense struggle of caregiving and the eventual gratitude it produces in them.
It’s always a choice the person makes to see disease differently. Or rather, to see the value of the person despite the disease.
In this season of Thanksgiving, it is good to see the change that Alzheimer’s and other diseases have brought to our self-centered culture.
So, thank you to all of you who write and share of your struggles, forming a new community that chooses to rise above bitterness and embrace even the bleakest, darkest days of life for the goodness they produce.
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Blogroll
- "Where to, Bud?" Early Onset Alzheimer's Blog - A thoughtful blog by a man with early onset Alzheimer’s
- Alzheimer's Reading Room - In it for the long run with Dotty
- Alzheimer's Research Forum - Targeting Breakthrough Research
- Annals of Neurology - Latest studies in neurology
- Changing Aging by Dr. Bill Thomas
- How to Live a Longer Life - Nutrition ideas and secrets on increasing longevity
- Journal of Alzheimer's Disease - an international multidisciplinary journal with a mission to facilitate progress in understanding the etiology, pathogenesis, epidemiology, genetics, behavior, treatment and psychology of Alzheimer’s
- Kris Bakowski's Blog on Early-Onset Alzheimer's - Kris is an active advocate for Alzheimer’s research
- Posit Science Blog - mind science
- The Dopamine Diaries - Lucid reflections on Dementia Care and Aging Well
- The Hope of Alzheimer's - Mary Kay Baum and sisters with early-onset speak out
- The Last of His Mind - Joe Thorndike, once the managing editor of Life and the founder of American Heritage and Horizon magazines, succumbs to Alzheimer’s
- The Myth of Alzheimer's - A doctor’s perspective on Alzheimer’s
- The Tangled Neuron - A Layperson Reports on Memory Loss, Alzheimer’s & Dementia














