The Tangled Neuron

Dementia Beyond Drugs: A Book by Al Power

        Al Power, MD

Along with St. John’s Home, Al Power hosted the informal gathering in Rochester, New York earlier this month.  He is an Eden Mentor at St. John’s, a long term care community in Rochester.  He’s a geriatrician, author, blogger, musician and public speaker.  Whatever label you apply, he is a man who has thought deeply about dementia and aging, and is working to change our approach to both.

His book Dementia Beyond Drugs: Changing the Culture of Care will make you question your assumptions, and might make you more optimistic about the future of aging and dementia care.

Fading From Memory: Book Review

When I first started blogging, there was a small group of us exchanging stories about caring for parents with dementia through our blogs.  Mike Pritchard in Sydney, Australia, joined that group in 2006.  Both of his parents were diagnosed with Alzheimer’s and his blog Fading From Memory chronicled his family’s struggle to care for them.

More than two years after his parents died, Mike has published Fading From Memory: what happens to a family when both parents have Alzheimer's? in book form.  It’s an unflinching look at the sometimes dreary realities of the end of life.

Early in the book, he includes his mother’s journal entries about the family’s emigration by boat from England to Australia.  He tells how they traveled the world, living on every continent and following his father’s work in the aviation industry.  To Mike, his parents seemed larger than life, until suddenly they weren’t.

“I never expected my parents to be immortal,” Mike writes, “but to see them now, two slow-moving stooped old people, unkempt and inarticulate, pottering around their unnecessarily dark house, arguing about cups of tea, is sometimes unbearably sad….  Where did all that life go?”

Finding Penelope in Wisconsin

For anyone who can get to the Milwaukee area, there are a few tickets left for Finding Penelope:  Some Heroes Stay Home, a play by Anne Basting in collaboration with Sojourn Theatre, the University of Wisconsin - Milwaukee Theatre Department and Luther Manor.  The play takes place throughout Luther Manor Tuesday March 15-18, 3 pm, and is inspired by Homer's Odyssey.  Call Luther Manor at 414.464.3880 for details.

Lakeview Ranch: Reducing "Challenging Behaviors" in Dementia

Lakeview Ranch residents Bernie (left) and Sheila-Roo the wallaby with Judy Berry

Summary:  Lakeview Ranch provides specialized dementia care for people who are at high risk of repeated hospitalizations because of behavioral issues.   With careful attention to residents’ emotional and spiritual needs, in addition to their physical needs, the staff is able to reduce residents’ behavioral problems, decrease medications, and prevent behavior-related hospitalizations.  This type of care reduces the total cost of caring for a person with dementia who has challenging behaviors, says founder Judy Berry.  

Judy Berry was a Regional Sales Manager for a barbecue company, selling ribs to stores and restaurants throughout the Midwest.  She was calling on customers when she got a phone call that her mother, Evelyn, was in the hospital.  Evelyn had dementia, and accidentally overdosed on her medications. 

This turned out to be the first of many such calls for Judy.  Each time, doctors would stabilize Evelyn enough for her to return to a nursing home or dementia care residence, and each time, her “challenging and aggressive behavior” would land her back in a hospital psychiatric unit.  Judy was disheartened by this cycle of increased medications, problems with nursing home staffs, hospitalizations and transfers.  In the last year of her life, Evelyn spent much of her time drugged, strapped into a chair and calling for help.

Her mother died in 1996, but Judy dreamed of starting a place where people with dementia could get the specialized intensive care her mother had needed.   Industry experts told her it was too expensive to provide this kind of care.  At age 55, single, with little savings and no formal training, she had problems finding startup funds.

Interesting study suggesting half of people diagnosed with Alzheimer's may instead have dementia due to other problems in the brain. http://bit.ly/eeE26E

New Ideas in Dementia Care

 
From left: Jim Rohl (St. John's resident), Al Power, Mona Johnson, Sarah Rowan, Richard Taylor (seated), Judy Berry, Julius Keya

In a previous post, I wrote about the alphabet soup of organizations working to find new treatments for Alzheimer’s. Much less well-funded and well-publicized are the organizations and people working to find new ways to care for people with dementia.

Earlier this month, several people at the cutting edge of this work came together in snowy Rochester, New York to share ideas and to make a video.   A big thank you to Richard Taylor for inviting me to take part, and to Al Power and St. John’s Home for hosting all of us so graciously.

 

Can Lifting Weights Improve Your Attention and Thinking?

Summary:  Lifting weights as little as once per week may improve your attention and thinking.

     Teresa Liu-Ambrose, Ph.D., PT

Several studies have shown that exercise might reduce your risk of memory loss, or even improve your memory and thinking.  Most of these studies have focused on aerobic exercise such as walking or aerobics classes.  

What about lifting weights?  Research by Teresa Liu-Ambrose, Assistant Professor at the University of British Columbia, and her colleagues suggests lifting weights once or twice per week can improve attention and thinking in older women.  

Lifting weights might not have an immediate effect.  In this clinical trial, the women who lifted weights were split into two groups:  those who trained once per week and those who trained twice per week.  Both groups were compared to a group of women participating in a twice weekly balance and toning program.  At the six month point, Dr. Liu-Ambrose and her colleagues found no significant differences between those lifting weights and those in the balance and toning program.  At the one year point, however, the once per week group had improved performance by 12.6% and the twice per week group by 10.9%.  The performance of the balance and toning group worsened slightly.

In a follow-up study one year after the formal training sessions ended, the once per week group still showed a 15% improvement on tests of attention and thinking over the balance and toning group.

Alzheimer's Drugs in Trial, Part 2

Summary:  There is a new emphasis on cooperative efforts to speed the development and approval of Alzheimer’s drugs.  The difficulties in bringing new Alzheimer’s drugs to market, along with doubts about a cure, highlight the continued need for research on (and funding for) care.

I wrote in Part 1 of this post about the difficulties of getting new Alzheimer’s drugs to market.   This problem is not entirely specific to Alzheimer’s – overall, new drug approvals are at a 25 year low.   

For patients and families waiting for more effective treatments, it may seem like nothing is happening.  But in reality, there are a lot of efforts underway to address this problem.  Given tight funding, the difficulties of drug development, and the recent failure of several drugs in trial, there is a new emphasis on collaboration to bring Alzheimer’s treatments to market.

Are There Alzheimer's Survivors?

There’s been quite a bit of discussion on the Dementia Advocacy and Support Network (DASN) message board about a sentence in the Alzheimer’s Association's generation alzheimer’s report:

     Today, there are no Alzheimer survivors — none.

Alzheimer's Drugs in Trial, Part 1

One of my friends diagnosed with Alzheimer’s recently talked with his counselor about how depressing his cognitive problems are.  He is losing hope that new Alzheimer’s drugs will be available in time to help him.  Based on media reports, his counselor said she thought he was too pessimistic, and that new treatments were around the corner. 

Should patients and families really expect new drugs to be available soon?

Cathie Borrie's Books: The Wisdom of Dementia

When you read Cathie Borrie’s book looking into your voice: the poetic and eccentric realities of alzheimer's, you’ll find the wisdom of dementia in her mother’s words.  When Cathie asks her mother what love is, she says “it’s the sublime felt between two people in the same working order.” 

The Emperor of All Maladies: Book Review

Dedicated scientists and suffering patients.  Passionate advocates and expert study groups.  Media reports of impending cures, calls for increased funding, and coordinated national efforts to fight disease.   

These are the ingredients of The Emperor of All Maladies: A Biography of Cancer.  In many ways, they are the ingredients of the Alzheimer’s story as well.

Should You Ask for One of the New Alzheimer's Diagnostic Tests?

Summary:   A Swedish study questioned the accuracy of the proposed “Dubois criteria” for diagnosing Alzheimer’s.  Professor Dubois says the criteria are very specific, and so will miss some cases, but will result in few false positive diagnoses.

Researchers are still working to validate the biomarkers included in the proposed criteria.  If you are considering requesting one of these tests before researchers can confirm its accuracy, there are some practical considerations you may want to discuss with your doctor.

I wrote last month about a Swedish study questioning the accuracy of the proposed “Dubois criteria” for diagnosing Alzheimer’s. These criteria incorporate biomarkers such as results of imaging scans and spinal fluid tests.

Commenting on the Swedish study, Bruno Dubois, leader of the group of experts who developed the criteria, says other research has shown “a high accuracy of the new proposed criteria.”  Professor Dubois is Director of the Memory and Alzheimer’s Institute at the Salpêtrière Hospital in Paris.

New Alzheimer's Diagnostic Techniques: Not Ready for Widespread Use?

Summary:  A recent study questions the accuracy of proposed biomarkers for diagnosing Alzheimer’s. 

Doctors currently make a diagnosis of Alzheimer’s based on symptoms and by ruling out other medical causes for those symptoms.  Two groups of researchers have proposed new diagnostic criteria that add certain "biomarkers" -- physical or biochemical characteristics that are signs of disease.  One set of criteria was developed by panels convened by the Alzheimer’s Association and the U.S. National Institute on Aging.  A similar set, the "Dubois Criteria," was developed by the International Working Group for New Research Criteria for the Diagnosis of AD.

The goal of these new criteria is more accurate diagnosis, which hopefully will lead to earlier and better treatment.  More accurate diagnosis would have been enormously valuable for my family, eliminating the long diagnostic roller coaster that my father endured. 

But at least initially, these new criteria may cause more confusion than clarity. Researchers at the Karolinska Institute in Stockholm recently compared the diagnoses of memory clinic patients via the current methods with diagnoses of the same patients using the Dubois criteria.  Use of the new criteria drastically decreased the number of people diagnosed with Alzheimer’s.

Television coverage of Alzheimer's

Summary:  Television coverage of Alzheimer’s has increased dramatically, but tends to emphasize treatments and personal and celebrity stories over less sensational facts. However, increased use of celebrities, along with expanding coverage in entertainment programs, may help publicize fact-based awareness and prevention campaigns.

Researchers at the University of Texas at San Antonio have published an interesting analysis of television coverage of Alzheimer’s news in the United States.  Television is still the major source of news for Americans, they say, and shapes how we view Alzheimer’s.

       Seok Kang, Ph.D.

Looking at 1371 television news transcripts from 1984 to 2008, the researchers found that coverage has increased dramatically.  News pieces during this period emphasized treatments, personal stories, celebrities and policies.  Facts, causes, signs and diagnosis received much less coverage.  Fact-based awareness and risk reduction efforts by the Centers for Disease Control (CDC) and National Institutes of Health (NIH) were not covered much at all.

Why so little emphasis on facts?  “It is related to the survival of the news media in this competitive media market environment,” says Seok Kang, Assistant Professor of New Media at the University of Texas at San Antonio and co-author of the analysis.

Education and Employment: Nondrug Ways to Prevent Alzheimer's and Dementia?

Summary:  The prevalence of dementia in older Americans seems to be decreasing.   Whether or not researchers find new medicines to prevent dementia, higher levels of education and late-life activity might reduce dementia rates.

       Ken Langa, MD, Ph.D.

Much has been written about the coming “silver tsunami” and the expected “epidemic” of Alzheimer’s and other dementias.   My conversations with eldercare professionals here on the west coast of Florida seem to confirm these predictions.   But in the U.S. overall, the numbers suggest the situation might not be so dire.

Researchers at the University of Michigan recently analyzed data on cognitive impairment from the Health and Retirement Study, a large survey of older Americans.  Along with his colleagues, Ken Langa, an Internist and Professor at the university, surveyed more than 7000 people over the age of 70 in 1993. They found 12.2 percent had cognitive impairment “consistent with dementia.”  In their similar 2002 survey, that percentage decreased to 8.7, a relative decrease of almost 30 percent.

Dr. Langa, whose work focuses on the epidemiology and costs of Alzheimer’s and other dementias, is the lead author on another recent study suggesting the use of Medicare claims to calculate dementia prevalence and costs of related care results in overstatement of both.

Alzheimer's and Dementia Screening

Summary:  As part of the new health care reform law in the U.S., Medicare will begin covering dementia screening next year.  Researchers who developed a new screening questionnaire called AD8 at Washington University in St. Louis believe it is the right tool for screening.  No matter which tool is best, screening all older adults for dementia may not be practical or useful. 

Along with more than 100 other participants, I listened to Tuesday’s Alzheimer Research Forum webinar about a new paper and pencil test to screen for dementia.  The new screening tool, called AD8, was developed by researchers at Washington University in St. Louis.  It consists of eight questions about changes in behavior that could be caused by problems with memory and thinking, and is meant to be answered by a family member or close relative or friend.  It can also be filled out by the person being screened.

A good portion of the webinar was a presentation by one of the tool’s developers, Dr. James Galvin (now at New York University).  He presented research showing AD8 is better at detecting early dementia than some other tools.  But the panel discussion and questions towards the end of the hour got at the more fundamental question:  is screening all older adults for dementia a good idea?

Living Your Best With Early-Stage Alzheimer's: Book Review

There are plenty of books for Alzheimer’s caregivers.  Most of those books feature advice from professionals.  But with an aging population and the trend towards early diagnosis, the number of people living with early-stage Alzheimer’s is growing.  Many can and do read, but there are few books for them, and even fewer books featuring advice from other people diagnosed with Alzheimer’s.

Lisa Snyder, MSW, LCSW

Lisa Snyder’s book, Living Your Best With Early-Stage Alzheimer's: An Essential Guide, goes a long way towards filling that gap.  The book addresses the medical, emotional, practical and legal questions people with memory loss have when they are first diagnosed.   These questions are not likely to be answered in a brief doctor’s visit.  The book is especially useful for patients who don’t have access to a memory disorders clinic that offers support and counseling.

Some of my friends with dementia say they felt their lives had ended when they were diagnosed -- it took a long time for them to focus on what they still can do and enjoy life.  Woven into each chapter of the book are quotes and advice from people with Alzheimer’s whom Lisa met through her work as a clinical social worker and Director of Quality of Life Programs at the Shiley-Marcos Alzheimer’s Disease Research Center at the University of California, San Diego.  Without glossing over difficulties, these quotes provide reassurance that life with Alzheimer’s is still worth living.

The focus of Alzheimer’s research is shifting from treatment to prevention.  This is important work, but doesn’t help the millions of people already living with dementia.  It’s equally important to increase their quality of life, and Living Your Best with Early-Stage Alzheimer’s is a valuable contribution to this effort.
 

   

 

 

 

"Healthy Brain Aging" Article

Alvaro Fernandez has a good no-nonsense article on healthy brain aging up on SribD.

Grand Rounds is up

...at Notes from Spice Island.  Check it out!