Fighting off dementia

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.

Club Sandwich Generation? Gasp

A club sandwich (Chicken, bacon, salad, etc), ...

A club sandwich (Chicken, bacon, salad, etc), photo taken in Preston, UK — Ein Club-Sandwich, Foto aufgenommen in Preston, UK (Photo credit: Wikipedia)

We may need to think this through.

At a recent San Francisco Bay Area End-of-Life Network lunch meeting, a friend casually mentioned being the middle-slice bread(winner) in a club sandwich generation. Seriously worried about the cost of keeping her 94-year-old demented mother in a care facility, she is also helping her son and daughter-in-law with their preschool children while both parents work. Club sandwich generation? Horrors.

The term seems to have been around for at least three or four years, but I managed to miss it earlier. I am not entirely thrilled about it now. How many generations will we eventually sandwich in? Does it not make sense for a few of us on the top to layer off?

So OK, I’m not quite 94 and not quite demented. At least, as well as I can remember. But I do have my advance directive done with all the DNRs and dementia provisions and Leave It Be messages possible, and hopefully before I get to the point of Medicaid-funded nursing home, because every penny saved has been spent, I’ll be toast.

Your brain at 100+

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.

Life: does longevity trump quality?

“We have to get out of the way,” she said; “make room for other, new people on the planet.” Accomplished author/editor Cyra McFadden, at a recent dinner party, was talking about a group of women scientist friends’ excitement over discoveries they have made which show promise of extending life a fraction longer. Cyra was in fierce, though silent, disagreement.

It may be time for those of us who disagree with the rampant prolong-life-at-all-costs theories  to stop being silent.

Americans are, in fact (as reported in Epoch Times below, and elsewhere) living longer all the time. Sometimes that’s just fine, especially if we’re in reasonable health. But what if we’re not? What if we’d just as soon be getting on with whatever follows this temporary time on earth? Millions and millions of people are living for hours, days or extended months and years in circumstances they would not choose simply because we have created a culture that says we must be kept alive no matter what.

Average life expectancy continues to increase, and today’s older Americans enjoy better health and financial security than any previous generation. Key trends are reported in “Older Americans 2008: Key Indicators of Well-Being,” a unique, comprehensive look at aging in the United States from the Federal Interagency Forum on Aging-Related Statistics.

“This report comes at a critical time,” according to Edward Sondik, Ph.D., director of the National Center for Health Statistics. “As the baby boomers age and America’s older population grows larger and more diverse, community leaders, policymakers, and researchers have an even greater need for reliable data to understand where older Americans stand today and what they may face tomorrow.”

Where do we stand right now? Well, the same source that says we’re living longer and enjoying better health and financial security (hmmmm on the financial security business) reveals that Americans are “engaging in regular leisure time physical activity” on these levels: ages 45-64: 30%; ages 75-84: 20%; geezers 85 and over: 10%. Hello? Better health and financial security, just no leisure time physical activity? Could it bear some relationship to obesity factors in the same data: 30+% for men, 40+% for women?

Does living well need to be assessed in the compulsion to live long? Why not? Everyone should have the right to live at whatever weight and whatever level of inaction he or she chooses. But the system is weighted toward keeping us alive under all conditions, and bucking the system is not easy. A poignant, wrenching tale of her father’s slow decline and death — and her mother’s refusal to go down that same path — was recently told by California writer/teacher Katy Butler in the New York Times Sunday Magazine.

Almost without their consent, Butler’s gifted, educated parents had their late years altered to match the system’s preferences:

They signed living wills and durable power-of-attorney documents for health care. My mother, who watched friends die slowly of cancer, had an underlined copy of the Hemlock Society’s “Final Exit” in her bookcase. Even so, I watched them lose control of their lives to a set of perverse financial incentives — for cardiologists, hospitals and especially the manufacturers of advanced medical devices — skewed to promote maximum treatment. At a point hard to precisely define, they stopped being beneficiaries of the war on sudden death and became its victims.

Given the limitless sources of victimization floating around, we should not have to add just-try-to-keep-them-alive-forever health care to the list.

My husband and I, having long ago signed advance directives with additional specific issues sheets (“If this happens, do that; if that happens, don’t do this,” etc) recently got them out and talked things over again, a very good thing to do for EVERYbody over 18. We will add dementia provisions to the existing documents while we can remember to do that (the closest you can come to avoid being warehoused in a memory-loss facility for umpteen years.) We are clear, and our friends and family understand, about having no interest in hanging onto life in a greatly diminished state if such an opportunity presents itself; for increasing thousands, it presents itself every day.

All this being said, there’s still a reasonable chance that I’ll be out of town one day when I’m in my 80s (which aren’t that far off), get wiped out by a speeding cyclist and picked up in a seriously mangled state by the paramedics, taken to a hospital that’s not Kaiser (which has all my directives on file,) miraculously brought into some heavily-sedated state of being because the hospital doesn’t consult Kaiser or the living will registry (which also has my directives) and kept alive by assorted mechanisms. By the time my husband or children get there to insist everything be unplugged — which of course will involve long hours and possibly court action — hundreds of thousands of dollars will have been needlessly spent.

I consider myself a highly valuable member of society, and my life a gift from God. But would those dollars not be better spent on a few kids needing specialized care?

Epoch Times – Americans Are Living Longer, According to Federal Report.

Alzheimer's: old music, new songs

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.”

Dementia: stories and sources

The post about dementia sufferers and their tendency to wander (May 6) evoked a host of stories about temporarily lost parents, grandparents, friends and relations. Almost everyone, it seems, has such a story — and unfortunately, those who haven’t may collect one or two in the future.  Reader Cathy Jensen sent a poignant tale of a friend who went wandering in his pajamas during the pre-dawn hours, but was found by the garbage collectors and brought home on the back of their truck. And reader Tom McAfee, en route to see his own mom and hopefully jog memories of children and grandchildren with photos, sent a link to a podcast aired on WNYC in March.

An offbeat idea, the WNYC piece explains, turned out to be a good solution for a nursing home in Germany from which residents were wandering off. Administrators created a bus stop in front of the home, complete with bench and a painted sign for a bus that never came. It provided a place where many wanderers could sit and wait until the urge to go back home, or elsewhere, melted away. Might not work everywhere, but it worked in Dusseldorf.

And reader JTMcKay4 sent, in case you missed them in the comments section, links to the Alzheimer’s Association’s “Safe Return” program and to a source for a long list of related documents. State-specific advance directive forms can also be downloaded, free, from the “Caring Connections” site maintained by the National Hospice and Palliative Care Association site, and this space remains committed to the support of the nonprofit Compassion and Choices, from which forms can also be downloaded.

There is no guarantee against winding up in a memory unit. But a little preparation can go a long way toward helping if the time comes.

When Mom & Dad go wandering: dementia on a relentless rise

“MISSING,” the sign reads. “Distinguished-looking elderly man. 6′ 1” slightly stooped. Gray hair. Wearing dark blue sweater and gray slacks. Name: George; does not always respond. Suffering from mild dementia. Wandered away from the Laurel Village shopping center area. Please call 415-xxx-xxxx with any information.”

The sad, 8″ x 10″ flyer has appeared (once the words were slightly different, but it was clearly the same George) at the bus stop near my home twice in recent months. I kept the number in my wallet for a while, hoping I might spot him because I walk the city myself. But the difference is that I have on a warm jacket — it’s way too cold in San Francisco, especially after dark, for only a sweater — and I know how to get home.  I have wanted to call the number and learn whether George got home, but it seems intrusive.

Last year for the first time, as reporter Kirk Johnson writes in The New York Times, people like George and a 60-year-old Virginia woman named Freda Machett accounted for more missing-person alerts than children and adolescents. They are confused and lost, and often are not found in time.

Ms. Machett, 60, suffers from a form of dementia that attacks the brain like Alzheimer’s disease and imposes on many of its victims a restless urge to head out the door. Their journeys, shrouded in a fog of confusion and fragmented memory, are often dangerous and not infrequently fatal. About 6 in 10 dementia victims will wander at least once, health care statistics show, and the numbers are growing worldwide, fueled primarily by Alzheimer’s disease, which has no cure and affects about half of all people over 85.
It started with five words — ‘I want to go home’ — even though this is her home,” said Ms. Machett’s husband, John, a retired engineer who now cares for his wife full time near Richmond. She has gone off dozens of times in the four years since receiving her diagnosis, three times requiring a police search. “It’s a cruel disease,” he said.
“You have to stop thinking logically, because the people you’re looking for are no longer capable of logic,” said Robert B. Schaefer, a retired F.B.I. agent who cared for his wife, Sarah, for 15 years at home through her journey into Alzheimer’s. He now leads two-day training sessions for the Virginia Department of Criminal Justice Services.

How to deal with dementia is the most bewildering of end-of-life issues, whether for oneself or for a family member. Most of us would choose almost any other scenario for our last months or years, but the choice is often not ours to make. We can file advance directives (mine includes a “Dementia Provision“) and express our wishes and do brain exercises; still, one in seven Americans, according to most fairly recent reports, now suffers from dementia and the numbers are on the rise.

Here’s one interesting perspective. My greatly beloved brother-in-law, who recently relocated with my sister to a retirement community, has Parkinson’s. Though his mobility and function are diminished, the disease has yet to affect his mind. Several weeks ago he told me he no longer fears dementia. “I see people more and more with varying stages of dementia,” he said, “and I believe you can be happy.”

But you can also wander off.

More Wander Off in Fog of Age – NYTimes.com.