Tag: Alzheimer’s

End-of-Life/General interest
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Two Reviews: Two Fine Books on Life’s End

by Fran Johns

Anita Hannig’s “The Day I Die” and Amy Bloom’s “In Love”

Photo by FORMAT arw on Unsplash

(The following appeared first as a blog for End of Life Choices California, an excellent nonprofit on whose board I’m proud to serve. It’s reprinted with pleasure, especially after Hannig told me that our blog resulted in more visits to her website than did her interview with Diane Rehm; I love being mentioned in the same sentence with Diane Rehm.)

Anita Hannig’s The Day I Die: The untold story of assisted dying in America has taken a well-deserved place as the definitive book on Medical Aid in Dying. Want information on how it works? On the history of the assisted dying movement? On the future of legal death with dignity laws? Hannig covers it all, in a book that reads like a personal, informal conversation with the author.

Hannig spoke recently with this reporter about The Day I Die – which is filled with stories of her own experience as a hospice volunteer, and accompanying other volunteers and professionals – and about the work we do at End of Life Choices CA.

“Volunteers are the lifeblood of assisted dying,” Hannig says. “They provide firstline support for families and patients, and it’s hard to overestimate the role they play. In my research, I witnessed how much families and their loved ones leaned on volunteers for their technical expertise but also – and equally importantly – for their human touch and care. In a time of great vulnerability and uncertainty, volunteers help patients navigate the ins and outs of qualifying for the law and accompanying them each step of the way afterward. The emotional labor volunteers put into their work is nothing short of admirable. I have profound respect for their work.”

Hannig, an associate professor of anthropology at Brandeis University, invested five years of study and hands-on involvement in writing The Day I Die. Along the way she accumulated a wealth of stories – poignant, humorous, heart-tugging, enlightening – that she shares in the book.

Looking ahead, Hannig says she wants to be optimistic about the future of the law, “but in the current political (or perhaps judicial) climate I am not sure such optimism is warranted. In the long term, however, I do think that we as a society will gradually move into a direction of granting more rights and freedoms to the dying. My hope is that assisted dying will eventually become legal in all fifty states.”

For now, Hannig says “there are still some misunderstandings about all the different steps someone needs to complete to qualify for assisted dying. Most people think it’s more straightforward than it actually is. Or they wait too long to start the process. Many are still under the impression that there’s a “magic pill,” when in reality the protocol of the medications is quite nuanced and complex. My book talks about the fascinating pharmacology of dying in more detail.”

The Day I Die, in fact, talks about the fascinating work of assisted dying in all its important, often difficult, always rewarding details. It’s a book to read, to keep and to give to those you love. 

*****

Amy Bloom’s In Love is a book for anyone facing Alzheimer’s, anyone who knows someone with Alzheimer’s – or  anyone who’s ever been in love.

It is, despite the somber underlying theme, a love story.

Bloom writes unblinkingly of her husband’s decision to end his life before Alzheimer’s can pull him into years of oblivion, and her own decision to support him in this quest. 

In just the first few pages it’s easy for the reader also to fall in love with Brian Ameche. Bloom writes with warmth and honesty about their love affair, begun while each was committed to someone else and eventually legitimized into a more or less conventional marriage. The handsome Italian architect/ex-Yale football player from a sprawling Catholic family and the celebrated Jewish writer/ teacher/ psychotherapist who share, at least, a dedicated atheism, create a life together bursting with joy. Until his diagnosis.

Brian, who has probably had Alzheimer’s for a few years, finally exhibits enough symptoms – confusion, forgetfulness, erratic behavior – that it can’t be ignored. And he is immediately, defiantly certain that he wants to end his life while he has the wits to do so.

In the U.S., there’s no legal, nonviolent way to accomplish this goal. Even in the 11 states or jurisdictions where Medical Aid in Dying is legal, one has to have a terminal diagnosis and be mentally competent; Alzheimer’s is a disqualifier. 

Ameche and Bloom finally settle on Dignitas, a Swiss nonprofit that helps people with terminal illness – including Alzheimer’s – end their lives peacefully. But Dignitas, in addition to the costs of getting to Zurich, has its own strict regulations: certifications of Ameche’s diagnosis, medical information and proof that he’s not just depressed, time-consuming hoops that must be jumped through. The couple set about making it happen, while keeping their plans from all but a necessary few. Toward the end they accomplish the final details – notes to friends and relatives that will be delivered after Ameche’s death, discussions about his wishes, plans for a few celebratory days in Zurich – which do include a celebratory moment or two – and for a friend to be there to fly home afterward with Bloom.

Bloom skillfully weaves glimpses of their romance and marriage, the good and the bad, into the story of their struggle to meet Dignitas qualifications and complete the journey. It’s a remarkable journey, remarkably well told.

(For anyone addicted to audio books, as this writer increasingly is, this one is a special treat: Bloom reads her own words. It’s as if she were telling the reader the tale.) 

California/Death and Dying/End-of-Life/General interest/geriatrics/Health/Healthcare/Lifestyle/Medicine/San Francisco/seniors
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Fighting off dementia

by Fran Johns

DementiaAlzheimer’s – already afflicting well over 5 million Americans – is expected to claim more than 16 million of us by 2050 if a cure isn’t found. Today it is at the top of the Bad News list of potential diagnoses for almost anyone over 50. Justifiably so, since the Centers for Disease Control and Prevention reports than one in three seniors now die with Alzheimer’s or other dementia.

That’s the bad news.

The good news, explained recently by Patricia Spilman, M.S. at a sold-out Commonwealth Club event in San Francisco, is that there are things one can to do lower the risk, and perhaps slow the progress of the disease. Spilman, who is Staff Scientist at the Buck Institute’s Bredesen Lab, should know. She has spent more than two decades researching neurodegenerative disease, and has written and spoken extensively on Alzheimer’s and related diseases.

“Forgetting,” Spilman says, by way of reassurance, “is normal. You don’t need to remember where you put the car keys last week, or a doctor’s appointment last month.” And studies – including one by Buck Institute founding President and CEO Dale Bredesen M.D. that is fascinating even for a lay reader – suggest that cognitive decline can be slowed, or in some cases reversed.

Spilman’s prepared remarks consisted largely of useful, realistic advice about how to delay the cognitive decline most of us will experience at some point. The audience, ranging from 20-somethings to more than a few senior citizens, was furiously note-taking throughout (or furiously jotting down questions for the Q&A session to follow.)

Exercise – particularly activities that combine movement and navigation such as tennis or golf – is at the top of the list. “It’s easier if you have a partner,” Spilman suggests, “because this adds the important element of socialization. Walking, plus climbing, is particularly good if you try new routes.” More than a few audience members nodded knowingly when Spilman noted the increasing, widespread dependence on mindless GPS. “Take the opportunity to look at a map,” she said.

Cognitive decline can also be offset by paying attention to the critical need for plenty of sleep. To help with a good night’s sleep, Spilman advises allowing at least several hours between eating and going to bed, and having a dark room. Chronic stress is relieved by a combination of exercise and sleep, along with those other preservatives of gray matter, yoga and mindfulness meditation.

Also good for the brain: almost any sensory stimulation. Music, smells, touch. Spilman cites Oliver Sacks’ Musicophilia: Tales of Music and the Brain, and Norman Cousins’ Anatomy of an Illness, in which Cousins treated himself with comedy as useful reading.

“Do something new every week,” Spilman suggests; “every day. Have goals in later life. Take classes, volunteer, build intergenerational relationships, pursue spirituality, encourage others to change and to grow.”

Computer games can improve cognition also. Spilman did not mention any specific sites, but this writer has enjoyed BrainHQ, and other brainy items from Posit Science’s Karen Merzenich, as well as introductory games on the Lumosity site. Most fascinating of all is the University of California San Francisco (UCSF)’s Brain Health Registry, in which anyone can participate; it’s free, and your brain might wind up helping someone else’s brain one day.

The Q&A segment following Spilman’s talk was fast and full of both personal stories and pertinent questions: “What’s normal decline?” (The difference between not remembering the movie star’s name and not being able to do a job well. You might keep a diary of cognitive function.) “What about genetics – the father-daughter-son factors?” (Yet unproven.) “How about overexposure to electromagnetic fields? (Don’t have unnecessary radiation.) And enough other issues raised for two or three more hours.

No one’s brain, in any event, was idle. Which indicates that everyone in Spilman’s audience was lowering his or her risk of Alzheimer’s.

General interest/Health/Healthcare/Medicine/seniors
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Want to put your brain to good use?

by Fran Johns

child Head

(Part Two of Data Today – Better Tomorrow)

Could this be you? Creating a better tomorrow through brain research??

It turns out one does not have to be a pro football linebacker to have a brain worth studying. One does not even need to have a brain like Albert Einstein’s, Steven Hawking’s or any of those scientists/exceptionalists/geniuses whose brains would seem worth figuring out.

One only needs to be 18 or over and willing to be studied, and then to go sign up on the Brain Health Registry. This entitles you to sit back and wait for your brain to help discover a cure for Alzheimer’s or ADHD or depression, or perhaps help find better ways to treat traumatic brain injury. Not bad, for just having a brain and investing a little time (no money.)

This writer got off to a sluggish start as a Brain Health Registry member. Signed up early on because it sounds like such a great endeavor, but then I ran into a few off-putting instructions like “This will take about 20 minutes. It is best done in a quiet room where there will be no distractions or interruptions.” Twenty minutes, quiet rooms and absence of distractions are three things hard to come by around my house.

Eventually, however, the requisite conditions were found, and I was off to create a better tomorrow – well, in partnership with a few thousand other participants and some very smart neuroscientists – by finding out stuff about the human brain. And this is one fascinating journey. The neuroscientists find it fascinating because they really are going to figure stuff out. But for participants, the fascination is in the process.

Participants enter a little basic, very general data about medical/family history etc. Then the fun begins. We have two sets of ‘Cognition’ tests aimed at assessing our memory, attention and other cognitive characteristics. “These tests give us a sense of how your brain is currently functioning,” the screen says. This participant can only wonder what the Brain Health assessment people think about how her brain is functioning. The ‘Cognition’ tests are computer games on steroids. For a while you try to remember and replicate the pattern of dots, and then you go to the card games. The card games require Yes or No answers about what the cards are doing, press D for Yes and K for No. My brain kept trying to tell me what the cards were doing, while my fingers tried to remember that K was not for Yes.

It is, all in all, a lot more fun that the computer games the rest of the world is playing.

In another three to six months, the BHR people will be reminding me to go back and do it again, or do something else, to see how the brain is getting along. Perhaps they will flag my entry and advise me to check myself into an institution. But more likely they will just combine my data with the data of a zillion more or less anonymous others – and find a cure for Alzheimer’s! Or depression! Or improvements in treatment of traumatic brain injuries! All with the help of my weary, aging brain. Plus, when the survey was completed I got an email from UCSF professor Michael Weiner, MD telling me I am a medical hero. “You’re helping to make brain research faster, better and less expensive – and ultimately that gets us closer to a cure for Alzheimer’s, Parkinson’s, and other brain disorders that strike tens of millions of Americans every year.” Who could resist?

You may want to go straight over to the Brain Health Registry and join the fun.

Health
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Your brain at 100+

by Fran Johns

Since about 1900, when the average lifespan for U.S. citizens was somewhere around 50, we’ve been pushing that boundary ever upward. Today, depending on exactly where you live and other factors like cigarettes and French fries, you can expect to hang on into your eighties and beyond. That’s fine with most of us, especially if our brains stay functional too – and therein lies the problem.

There is reason to believe, if neurological studies on worms prove out, that humans could live to be 300 with a little genetic tinkering. If you sign up for this, a possibility predicted by University of California San Francisco neuroscientist Dena Dubal, you might want to have Dr. Dubal and her colleagues nearby for your brain care.

At a recent luncheon in San Francisco, Dr. Dubal and fellow UCSF research scientist Wade Smith talked of the work going on in their labs as if it were simply what they do for a living. To a spellbound audience, however, it sounded more like miracle-making. “Just a little genetic tinkering.” Altering the aging process, staving off dementia… it’s all in a day’s work. A little extra Clotho (so designated for the anti-aging Greek goddess of the same name) blocked memory loss in mice, Dr. Dubal said; it’s reasonable to project that similar treatment might some day be made available to mammals.

This reporter came home, followed a few of those links and was quickly lost, which is attributable — in part, at least, we hope — not to short-term memory loss but to my degrees in Art and Short Fiction vs the very long list of degrees plus other academic and scientific credentials of Drs. Dubal and Wade.

For those of us already worried about the relentless increase in dementia among the 65+ population, the possibility of living to be 300 is not altogether good news. But fortunately our brains are the concern of the brains at UCSF.

California/Health/Lifestyle/Medicine/seniors/USA/Women
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Live longer, healthier: prospects ahead

by Fran Johns

More news just in on the health and longevity front. At the University of California San Francisco medical center, which I can see from my studio window but that’s about as close as I will ever come to claiming kinship, a clinical trial getting underway will investigate the telomere factor. You haven’t been worried about your telomeres? Get used to them. It hasn’t been so long since cholesterol and genomes became household words.

Bay Area women who volunteer for a clinical trial at UCSF will be among the first people in the world to learn the length of their telomeres – the protective caps at the ends of chromosomes that regulate cell aging and may help people live longer, healthier lives.

Research has shown that the length of people’s telomeres is related to their “cellular age” – the health and stability of certain cells in their body. Because telomere length helps determine cellular health, it’s also been identified as a possible biomarker that can reveal information about a person’s overall health. Short telomeres have been linked to health problems like heart disease and diabetes.

UCSF researchers say it’s possible that identifying a person’s telomere length someday could become as common as checking cholesterol levels. A handful of private companies already have started advertising telomere testing to individuals. In fact, two of the researchers involved in the UCSF study are looking into starting their own company to test telomere length.

The study, reported by Erin Allday in today’s San Francisco Chronicle, will concern such issues as what relationship your telomeres’ length have to health and aging in general, and whether you even need to know a lot about the little cellular-ites. “The idea of telling people their telomere length is totally new and somewhat radical…,” said Elissa Epel, an associate professor of psychiatry at UCSF and one of the lead researchers in the telomere study. (On a purely personal, though relative note: you just try not to worry about it all when you are overage — they want women 50 to 65 — for an aging study and the lead researcher looks like she’s about as old as your granddaughter.)

Medical ethicists say the UCSF study makes sense – as more attention is drawn to telomere length as a potential marker of overall health, doctors should understand whether it benefits their patients to get that information or not.

If people can’t change their telomere length, there may be no point in telling them. Telomere length may be similar to some types of genetic testing that tell people whether they’re at increased risk for Alzheimer’s disease or certain types of cancer, said Arthur Caplan, director of the University of Pennsylvania Center for Bioethics.

Some individuals may decide they want that information – but it’s not always an easy decision to make, he said. “You might find out that you seem to be a premature or rapid ager, but whether there’s anything anybody can do to stop it or reverse it, that remains to be seen,” Caplan said.

How much our telomeres will tell us, what use we can make of it all, and whether you and I really want to know — these issues remain to be seen. Or at least, to be discovered in  the coming study. I have absolute trust in the folks at UCSF. If you do too, and you fit the parameters (female living somewhere in this lovely part of California, between 50 and 65) and want to volunteer to be a part of it all, whip off an e-mail to knowyourtelomeres@ucsf.edu.

UCSF to look at new longevity, health marker.

California/Health/Holidays/Lifestyle/Medicine/seniors/USA/Women
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Alzheimer's: old music, new songs

by Fran Johns

Think nursery rhyme. Sing the words. How long is it since you learned that ditty?

Years ago a friend of mine named Alice suffered a stroke that left her with the ability to say only two words: “one, two.” Or she may have been saying “want to.” In the months ahead she developed a skill for packing more meaning into that phrase than most of us can manage in several paragraphs. “ONE two!,” she would fairly shout at her husband, expressing displeasure (something she did with regularity before the stroke.) “OnetwoONEtwo?” she would ask, in a “Do you really like it?” voice. Still, it was tough on friends and family, and had to have been more than frustrating for her.

Eventually Alice and her husband moved into an assisted living facility. Though she was a woman of limited education and resources, she was able to resume a minimal degree of activity within that community. I saw her about once a week there, for a period of months.

At Christmas time, a group of us went caroling in Alice’s building. Midway through one old, familiar song, as we stood facing an assembled group of residents, someone noticed that Alice was singing merrily along, word for word. There was a lot of nudging and head-nodding, and by the end of the last verse not a dry eye. As we left, Alice smiled and said, “One two, one two.”

Now comes another interesting word about music and the mind, from a Science Daily article posted on the PositScience blog. It cites results from research by the Boston University School of Medicine showing that people with Alzheimer’s retain verbal information better when it comes within the context of music. The findings appear online in Neuropsychologia, an international journal to which I admittedly do not subscribe.

To determine whether music can enhance new learning of information, AD (Alzheimer’s Disease) patients and healthy controls were presented with either the words spoken, or the lyrics sung with full musical accompaniment along with the printed lyrics on a computer screen. The participants were presented visually with the lyrics to 40 songs. Twenty of the song lyrics were accompanied by their corresponding sung recording and 20 were accompanied by their spoken recording.

After each presentation, participants were asked to indicate whether or not they were previously familiar with the song they had just heard. The BUSM researchers found accuracy was greater in the sung condition than in the spoken condition for AD patients but not for healthy older controls.

The blog elicited responses ranging roughly from “that’s very interesting” to “so what else is new?” I come down on the “that’s very interesting” side of the issue, because it is.

And the more we know about connections of this sort, the more we begin to understand about the workings of the mind and the broader the possibilities of unlocking its secrets. Those pesky memorizations of yore, set to music, still manage to survive all manner of afflictions.

I still can’t figure out where I put the keys… but I can sing you every line of “Itsy Bitsy Spider.”

California/Health/Lifestyle/seniors
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Your latte or your life

by Fran Johns

At last, an addiction I can be proud of. Having given up nicotine, alcohol and sin in general over the years, I was beginning to despair about the remaining unbreakable habits:  sugar, butterfat… and caffeine.  But now, suggests Wall Street Journal health writer Melinda Beck, caffeine might just be putting a little distance between Alzheimer’s and me. It might not be an anti-dementia guarantee, and it could have a few downer side effects, but still. A ray of sunshine on the addiction scene.

To judge by recent headlines, coffee could be the latest health-food craze, right up there with broccoli and whole-wheat bread.

But don’t think you’ll be healthier graduating from a tall to a venti just yet. While there has been a splash of positive news about coffee lately, there may still be grounds for concern.

  • Cancer: Earlier studies implicating coffee in causing cancer have been disproven; may instead lower the risk of colon, mouth, throat and other cancers.
  • Heart disease: Long-term coffee drinking does not appear to raise the risk and may provide some protection.
  • Hypertension: Caffeine raises blood pressure, so sufferers should be wary.
  • Cholesterol: Some coffee—especially decaf—raises LDL, the bad kind of cholesterol.
  • Alzheimer’s: Moderate coffee drinking appears to be protective.
  • Osteoporosis: Caffeine lowers bone density, but adding milk can balance out the risk.
  • Pregnancy: Caffeine intake may increase the risk of miscarriage and low birth-weight babies.
  • Sleep: Effects are highly variable, but avoiding coffee after 3 p.m. can avert insomnia.
  • Mood: Moderate caffeine boosts energy and cuts depression, but excess amounts can cause anxiety.

So let’s see. My bone reports have actually upscaled recently, so all that butterfat and a few bone meds are outpacing the latte. I can fall asleep midway through a cappuccino, and I don’t have time to be depressed. Unlikely to get pregnant. Addiction situation looks better and better. Further insight comes from Duke University Medical Center psychophysiologist Jim Lane, who’s been studying the effects of caffeine for more than 25 years, and from a distinguished addiction psychiatrist (I wonder if I should volunteer for a study) at Vanderbilt University.

“When I went to medical school, I was told that coffee was harmful. But in the ’90s and this decade, it’s become clear that if you do these studies correctly, coffee is protective in terms of public health,” says Peter R. Martin, a professor of psychiatry and pharmacology at Vanderbilt University and director of the school’s Institute for Coffee Studies, founded in 1999 with a grant from coffee-producing countries.Still, many researchers believe that the only way to draw firm conclusions about something like coffee is through experimental trials in which some subjects are exposed to measured doses and others get a placebo, with other variables tightly controlled. When that’s been done, says Duke’s Dr. Lane, “the experimental studies and the [observational] studies are in very sharp disagreement about whether caffeine is healthy or not.”

Harmful Effects

His own small, controlled studies have shown that caffeine—administered in precise doses in tablet form—raises blood pressure and blood-sugar levels after a meal in people who already have diabetes. Other studies have found that caffeine and stress combined can raise blood pressure even more significantly. “If you are a normally healthy person, that might not have any long-term effect,” says Dr. Lane. “But there are some groups of people who are predisposed to get high blood pressure and heart disease and for them, caffeine might be harmful over time.”

[HEALTHCOLfront]

Epidemiologists counter that such small studies don’t mirror real-world conditions, and they can’t examine the long-term risk of disease.

The debate goes on. Do people remember how many cups they drink? How big is your mug? How random is your study? Did your ancestors have a history of — uh, oh, my parents met and married in Brazil where I was born. Maybe that’s where it all started.

I will welcome your comments on caffeine addictions; they will be compiled over a take-out tall extra-foamy latte.

Seeking Coffee’s Benefits to Health – WSJ.com.


California/Entertainment/General interest/Health/Lifestyle/seniors/USA/Women
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Can you beef up your brain?

by Fran Johns

Not multi-tasking fast enough? Trouble concentrating? Worried about memory loss?

Maybe those neurotransmitters in your poor, information-overloaded brain can be expanded to improve these functions… and maybe not.  A panel of experts on the PBS series Life (Part 2) is tackling the topic of brain exercise — a topic which has been tackled in this space several times in the past (How’s your brain fitness today, 10/5; Diet, exercise and Alzheimer’s, 11/28.)

We talked with panelist Denise Park, PhD, founder of the Center for Vital Longevity at the University of Texas, who starts right out by debunking any notion that those crossword puzzles will keep you sharp: [youtubevid id=”xZBzZZJHic0″]

But all is not lost. Jigsaw puzzles could indeed help. “With jigsaw puzzles you’re manipulating materials,” Park comments, “and actively puzzle-solving; what we call executive function.” This may explain — though only in part — the brilliance of British novelist Margaret Drabble, whose new memoir, The Pattern in the Carpet is subtitled A Personal History with Jigsaws; although my own personal history with jigsaws unfortunately hasn’t enabled me to write like Margaret Drabble.

It is the combination of functions that stimulates, and perhaps enhances, those brain cells, Park explains. She recommends doing something both stimulating and fun: dancing (“I believe the social component is important”), learning to play a musical instrument, etc. — in which motor, auditory and other systems all come into play. Or taking up something like photography, with which one masters one step and then moves on to the next.

“I’m reluctant to prescribe anything to improve cognition,” Park says, “because we don’t know yet. We need to know a lot more.” Still, current findings — Park’s Center is doing fascinating work with aging citizens who are learning to quilt — are heartening, and anecdotal evidence about those of us reciting lists of numbers to each other and then trying to do them backwards, as suggested by the SharpBrains people, suggests that hilarity is good.

And the best news may be that computers aren’t the be-all and end-all here. Park suspects that sitting in front of a computer playing games, even games advertised to stimulate the brain, may have no great brain-building value at all.

So this space advises getting out the dancing shoes or the mandolin, inviting friends in to play numbers games — and maybe buying a giant jigsaw puzzle (for two.)

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