The Tangled Neuron

The I CAN! I WILL! Library: A Major Milestone

Sometimes it feels like not much has happened in the world of Alzheimer’s and dementia since my father died.  We still don’t know what causes dementia, and there are still no highly effective treatments.

But there has been progress in enabling people with dementia to live better lives.  The efforts of a few professionals and laypeople have begun to reduce the stigma and isolation of dementia, and raise awareness of the rights, needs and value of people with cognitive disabilities. 
 
A major milestone in this growing movement is the launch of the I CAN! I WILL! Idea Library.

Living Well After an Alzheimer's Diagnosis: new ebook

It’s easy to say you can live well with memory loss, but what exactly does that involve?  How do you arrange your life when you or a family member has been diagnosed with Alzheimer’s or dementia?  Where do you start?

A new and affordable ($1.99) ebook, Living Well After an Alzheimer's Diagnosis, is full of practical ideas and tips for everyone in the family.  The four chapter ebook is written by Lisa Gwyther and  P. Murali Doraiswamy, a social worker and a physician,  and was previously published as part of The Alzheimer’s Action Plan.

Living Well After an Alzheimer’s Diagnosis deals less with the technical details and more with the practical business of living with cognitive challenges.   Somehow this slimmed-down version makes it easier to appreciate the graceful and gracious ideas in this book. 

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.

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.

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.
 

   

 

 

 

Marcel Brasey and Anne-Claude Juillerat Van der Linden Awarded Coup de Coeur Prize

  Marcel at award ceremony

Marcel Brasey has been awarded the 2010 "Coup de Coeur" prize by the Swiss Alzheimer's Association of Geneva.  Marcel received the prize for his courage and determination in facing Alzheimer's and for creating his French-language site, "Survivre avec un diagnostic de maladie d'Alzheimer, The prize was also awarded to the Memory Clinic of Geneva, represented by Anne-Claude Juillerat Van der Linden, for supporting Marcel's efforts.  Congratulations Marcel and Anne-Claude!

 

The Alzheimer's Disease Education and Referral Center (ADEAR)

Need information on Alzheimer’s?  For people concerned about memory loss, as well as for researchers and family or professional caregivers, the U.S. National Institute on Aging’s Alzheimer’s Disease Education and Referral (ADEAR) Center may be able to help.  Through its website, phone calls, internet chat and other communications, the Center handled approximately 70,000 requests for information in 2009.

The NYU Caregiver Intervention

Summary:  The New York University Caregiver Intervention lessens caregiver depression, reduces caregiver concern about behavioral symptoms and delays institutionalization.  The program may be coming soon to a community center near you.

  Mary Mittelman, Dr.P.H.

In my last post, I wrote about the evidence that a program of caregiver education and support lessens caregiver depression and lengthens the time a person with dementia can be cared for at home, rather than in an institution.   One such program has been studied extensively by Mary Mittelman and her colleagues.  Dr. Mittelman is Director of Psychosocial Research and Support, Center of Excellence on Brain Aging and Research Professor Department of Psychiatry at New York University.  She is also co- author of Counseling the Alzheimer’s Caregiver: A Resource for Health Care Professionals.

In a clinical trial ranging over 23 years and involving more than 400 caregivers of spouses diagnosed with Alzheimer’s, Dr. Mittelman and her colleagues (including Bill Haley at the University of South Florida) compared caregivers receiving intensive  education and support to those receiving “usual care.”

Nondrug Treatments for Alzheimer's: A New Systematic Review

Summary:  A systematic review of clinical trials of nondrug treatments for Alzheimer’s disease found good evidence that a program of caregiver education and support lengthens the time a person with dementia can be cared for at home, rather than in an institution.  The same review found evidence (although not from large, well-designed trials) that some nondrug treatments for people with dementia and their caregivers may improve patients’ memory, mood, behavior and functionality as well as improve caregivers’ mood, psychological well-being and quality of life.  More research is needed to investigate the costs and benefits of nondrug treatments.

Research on drugs to treat memory loss dominates the headlines, but some researchers think nondrug treatments may be just as effective.  Sometimes called “nonpharmacological therapies” or “psychosocial interventions,” these nondrug treatments include physical exercise, caregiver education, cognitive stimulation, counseling, music therapy, reminiscence therapy and training on completing “activities of daily living” (ADLs).   Unlike drug-based treatments, these treatments are often for caregivers, as well as for people with memory loss.

Living with Memory Loss Approved By ADEAR

Living with Memory Loss has been approved by ADEAR (the U.S. National Institute on Aging's Alzheimer's Disease Education and Referral Center) and is listed in their database!

The Trouble With Expectations

You’ve probably seen recent media reports on the proposed changes to the guidelines for diagnosing Alzheimer’s, along with an article claiming that “a spinal fluid test can be 100 percent accurate in identifying patients with significant memory loss who are on their way to developing Alzheimer’s disease.”   Today’s headlines include a story about a blood test for predicting whether you’ll develop Alzheimer’s.

Although most professionals are careful to say the proposed guidelines and tests aren’t ready for widespread use, public expectations seem very high.   On a flight last month, I sat next to a man in his 20s whose stepfather is showing signs of memory loss.  My seatmate wasn’t terribly concerned about his stepfather, he said, because he had seen the recent reports of progress in Alzheimer’s research and believed that a cure is around the corner. 

Expecting Improved Diagnosis and Treatment

        Mary Kay Baum

Two of my friends diagnosed with young onset dementia also have high expectations.  They sent me their thoughts supporting the proposed guidelines for diagnosis, particularly the guidelines for a diagnosis of “preclinical Alzheimer’s.”  Their strong support is based on the long and difficult process each went through to get diagnosis and treatment, and the relative success of treatments in stabilizing their conditions.   It’s also based on their assumption that they would have been diagnosed with some form of Alzheimer’s if the proposed guidelines were used when they first sought answers about their symptoms.

“Consider me,” wrote Mary Kay Baum, who has a strong family history of dementia.   “I am a 63 year-old woman who was a lawyer and pastor with two graduate degrees, thirty years of public service, and ten years of cognitive challenges. The old Alzheimer’s disease criteria ignored me. It did not have a vocabulary for my issues. Doctors did not know what to do with me! The criteria from 25 years ago did not advise practitioners to help me prevent the dementia we had seen in my mother and my aunt while in their mid-fifties. Most research excluded me…. Many in my situation fear we won’t be treated until we are really demented.”

Aspirin, Brain Bleeding and Memory Loss

I’ve written before about how bleeding in the brain is more common than previously thought, especially for people diagnosed with Alzheimer’s.  Bleeding in the brain (which can be detected by a type of MRI) may be a sign of the cerebral amyloid angiopathy my father had, and is linked to memory loss. 

A new study suggests that if you’ve already had bleeding in your brain, aspirin may increase the risk of further bleeding.  This adds to the evidence that you should check with your doctor before taking aspirin on an ongoing basis.

Tampa Tribune piece on Living with Memory Loss Patient Guide at http://bit.ly/c8ry1p

The Alzheimer's Store: Personal Service, Professional Expertise

          Ellen Warner

I talked last week with Mark and Ellen Warner, the people behind The Alzheimer’s Store.  Although they have a busy online store and send out more than 100,000 print catalogs each year, they have an intensely personal approach to their business.

They take great pride in making sure customers are buying products that really meet their needs.  “You know the scene in Miracle on 34th Street where Kris Kringle sends shoppers to other stores if Macy’s doesn’t have exactly what they need?  That’s how we operate,” Ellen says.  

Sometimes that means not making a sale.   That was the case when a person with symptoms of early stage dementia called The Alzheimer’s Store recently to order an inexpensive memory aid.  After talking with the customer for 45 minutes, a staff member transferred the call to Ellen.  Ellen spent 90 minutes talking with him, and Mark another hour.  The Warners felt the customer’s memory loss was serious, and that he was endangering himself and others.  Instead of selling a memory aid, they encouraged the would-be customer to seek diagnosis and assistance, and were able to refer him to nearby resources.

Brain Test Britain Shows No Benefits From "Brain Fitness" Training

Last fall, I wrote about participating in Brain Test Britain, an online trial of brain fitness training.  The trial was designed to test whether brain training improves general memory and thinking.

Dementia and Quality of Life

The Alzheimer's Society has released a new report based on interviews of 44 people with dementia.  The report concludes that people with dementia can have a good quality of life, and highlights what factors are most important in determining that quality.

Alzheimer's Association Press Release on Living with Memory Loss

Great press release from the Alzheimer's Association Florida Gulf Coast Chapter on partnering with The Tangled Neuron to distribute the Living with Memory Loss Patient Guide!

Elder Wisdom Circle

My friends with early stage memory loss are among my best personal advisors.  They seem to have a way of getting to the heart of a matter, and understanding what’s important.

They might be able to give advice to a variety of people through the Elder Wisdom Circle (EWC), an online site where anyone can ask for personal or career advice, and get a free, private response via email.  Requests for advice are assigned to the most appropriate volunteer or group of volunteers among a pool of 600 “elders,” age 60 to 105.

The work is done through the Elder Wisdom Circle’s online system, says founder Doug Meckelson.   If you’re not confident you can navigate an online system, you may still be able to volunteer.

The Thousand Mile Stare: A Conversation with Gary Reiswig

My friend Chuck Jackson was diagnosed with young onset Alzheimer’s disease at age 50.  It wasn’t a total surprise to him – his brother was being treated for Alzheimer’s and many of his cousins had it.  His mother and at least nine of her siblings had it.  Most had symptoms early in midlife; some died while still in their 50s.  Chuck and many of his relatives have a rare genetic variation called presenilin 2, or PS2, that almost guarantees a person will develop Alzheimer’s.

It’s only recently that the stigma attached to dementia has lessened.  For a long time, Chuck’s relatives didn’t talk much about their family history.  But since his diagnosis in 2004, Chuck has talked with support groups, participated in research and testified before Congress.
 
His cousin Gary Reiswig, who now knows he does not carry the PS2 gene variation, has gone even more public about the disease that has ravaged his family.  His new book, The Thousand Mile Stare: One Family's Journey through the Science and Struggle of Alzheimer's, is a very personal journey through generations of disease and tragedy.

The book opens in 1936, when Gary and Chuck’s grandfather, perhaps in the early stages of Alzheimer’s, drove his truck into the path of an oncoming train in rural Oklahoma.  He and one of his sons were injured, and his wife was killed.  From that story, so emblematic of the family’s problems, the book spans two continents and more than two hundred years.  The family’s roots as “Volga Germans” who left Germany to farm land along the Volga River in Russia in the 1700s are interesting, but it’s the little details of daily life with Alzheimer’s that make this book so riveting.   

MCI Symposium: Memory Loss and Exercise

Nicola Lautenschlager, MD, FRANZCP

I recently started running again, five years after a knee injury slowed me down.  It isn't pretty, but it might be good for my brain.

At last year’s MCI Symposium, Nicola Lautenschlager, Professor of Psychiatry of Old Age at the University of Western Australia, presented the results of a clinical trial of exercise to prevent cognitive decline. Those who took part in an exercise program actually improved their scores on tests of memory and thinking.

     Yonas Geda, MD

Since then, results of several studies on exercise to prevent memory loss or improve memory and thinking have been published, including a population-based study led by Yonas Geda at Mayo Clinic and a small trial led by Laura Baker at the University of Washington.

Laura Baker, Ph.D.

The results of these studies are being published so fast I can hardly keep up.  You can read what I've found out so far in my latest report on the MCI Symposium.