The Tangled Neuron

Another Video, Another Grim Portrayal

Last month, a group of people with memory loss, their families and doctors successfully petitioned the French Alzheimer’s Association to drop plans to promote a video of people who appeared to have very advanced dementia in dire situations.

This week, I got an email invitation from the national Alzheimer’s Association to view a similar video of a young daughter dealing with her confused and paranoid mother.  It has the same feel as the French Alzheimer’s Association video – stark and flat, with dark music in the background.

This video may represent one family’s reality.  But with the help of treatments, adjustments to lifestyle, coping mechanisms and friends and family, people diagnosed with Alzheimer’s and other dementias often lead interesting and pleasant lives.  Why not a video showing someone volunteering in the community, enjoying his family, or playing a musical instrument?

There’s still too much shame and horror about a diagnosis of dementia, and some of that is fed by one-dimensional portrayals like this video.  We need to balance our view by focusing on the strength and dignity of people with memory loss. 

German Institute Cites Lack of Evidence for Alzheimer's Treatments

The Institute for Quality and Efficiency in Healthcare has issued a new report on Alzheimer's treatments.  Comissioned by the German government, the report concludes:

• there is not enough proof that memantine (sold as Namenda in the U.S.) is effective in treating Alzheimer's
• cholinesterase inhibitors can "slightly delay" a decline in memory and thinking
• the evidence on ginkgo is mixed
• there's not enough proof that non-drug treatments are effective.

Brain Fitness Trial Online

Brain fitness is a controversial topic.  Can you really prevent or slow memory loss by "training your brain?"  Do improved scores on brain fitness programs translate to improved functionality in everyday life?

There's not enough evidence to answer these questions.  But scientists will have some data to analyze when the results of Brain Test Britain are announced next March.  The study aims to test whether a specific program of brain training can improve performance on unrelated tests of brain function.

The study is being conducted online, so anyone can participate.  I signed up, but have had a hard time finding the 10 minutes, three times per week that is required.  My inbox is full of messages like this one:  "You haven't done a Brain Test Britain training session for ages. This is your last reminder!"

Richard Taylor's New DVD

I just watched Richard Taylor’s new DVD “Be With Me Today.”  The DVD is from his presentation to professionals at the Person-Centered Dementia Care Conference in Atlanta.

In the 51 minute video, he talks about what caregivers (family and professional) can do for people with dementia.

The most interesting part of the presentation is when Richard talks about how people with dementia process things differently than people who don’t.  That seems like a simple insight.  But when I think back to when my father was alive, I wonder if I just assumed he wanted what I would want.  Maybe I should have thought more carefully about what he needed in the last phone conversations and visits we had…

I recommend Richard’s DVD for anyone living with or caring for someone with memory loss.  You can order it through Have a Good Life.

Q & A with John Zeisel, Author of I'm Still Here

Last spring, I read a book by John Zeisel, Ph.D. called I'm Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer's .  I liked how the book emphasized that some memories and abilities can remain intact in people with dementia, and that certain capabilities (powers of observation, creative talents) may actually be enhanced. 

Still, I wondered who the book was written for, and sent a note to Dr. Zeisel asking about his intended audience.  This wasn’t an idle question - I’m working on a printed Patient Guide called Living with Memory Loss, and have been thinking about who the audience will be.  Nor was it an easy question – as you’ll see by his response below, it took Dr. Zeisel a while to mull this over.

Taking Memory Loss in Stride

                             Gina Wilson

Gina Wilson was visiting her sister in California six years ago when she developed a bad headache.  She thought it was just another one of her migraines.  Back home in Florida, Gina stayed in bed for several days.  Her relatives insisted it was something more serious than her usual migraines, and took her to Mease Countryside Hospital in Clearwater, Florida.  At forty years old, she was diagnosed with a hemorrhagic (bleeding) stroke.

Gina doesn’t remember much about that day, except that she wanted to get to work.  She owned and managed the L.I.F.E [Leadership is Fundamental Every Day] Institute, and had a busy schedule working with juveniles in a court-ordered anger management and substance abuse program.  The neurosurgeon who examined her told her she would have to have surgery.

“I told the doctor I had to go to work, and would come back another time,” she says, laughing.  That wasn’t an option, and she had her surgery at nearby Mease Dunedin Hospital.

The French Alzheimer's Association Drops Plans for Video

Marcel Brasey recently emailed to tell me about a video called “Fortunately” that the French Alzheimer’s Association planned to air on television and on their web site.  The video seems to show people with very advanced dementia in dire situations.

A woman urinates in the grocery store, another stares blankly into the camera with blood running down her face, a man eats dog food, etc.  Dark music plays in the background.  At the end, the words on the screen say “Fortunately, they won’t remember.”

Access to Potential Alzheimer's Treatments Outside of Clinical Trials

Summary:  The FDA’s “Expanded Access to Investigational Drugs for Treatment Use” rule provides a way for patients who can’t participate in clinical trials to gain access to potential treatments not yet approved by the FDA.  Despite optimistic headlines about Alzheimer’s cures and breakthroughs, many drugs currently in trial seem to have only incremental benefits.  This may keep demand for expanded access to potential Alzheimer’s treatments low.

Over the past few months, I’ve received several emails from people diagnosed with Alzheimer’s or their caregivers asking how they can get access to Alzheimer’s drugs still in clinical trials.  Most of these inquiries were about Dimebon, Rember or potential “Alzheimer’s vaccines” such as Bapineuzumab.

In each case, someone saw an optimistic media report about the promise of a drug in clinical trials (an “investigational drug”), and wanted access to it before trials were completed and it could be approved for the U.S. market. 

The Voices of People with Dementia

DASN (Dementia Advocacy and Support Network) International is an online support group for people with dementia.  Thanks to one of its members, Morris Friedell, for pointing out an article in the February 2008 edition of Dementia about a small study by Welsh researchers on the benefits of participating in this group.

Mild Cognitive Impairment Symposium: What Do Autopsy Studies Tell Us?

        Joseph Parisi, MD

In a previous post, I wrote about donating your brain.  With brain donation, a patient can make a contribution to research, and the patient’s family typically receives a copy of the autopsy report at no charge. 

Autopsy studies using tissue from donated brains can help researchers understand the various changes in the brain that may underlie problems in memory and thinking.  These studies include examination of the brain by a neuropathologist, who evaluates the type and extent of brain pathologies, or abnormalities, that might be present. 

This kind of study was the focus of presentations by Dr. Joseph Parisi, Professor of Laboratory Medicine and Pathology at Mayo Clinic, and by Dr. Julie Schneider, Assistant Professor of Neurology and Neuropathology at Rush University Medical Center at the 7th Annual Mild Cognitive Impairment (MCI) Symposium last spring.  I’ve just posted a summary of their presentations on autopsy studies of the brains of people who had been diagnosed with MCI. 

New Memory Loss Site (Portuguese)

Judy Robbe runs support groups and works towards improving the quality of life for people with dementia and their families in Brazil.  If you speak Portuguese, check out her beautiful new site Harmonia de Viver.

Brain Donation: Q & A with Nancy Teeten at USF's Byrd Institute

Raelynn Wapinnsky, Nancy Teeten, LCSW, CAP, and Emelyne Cherenfant, MSW, LCSW

When my father died, we found it difficult to donate his brain for research, and to request an autopsy.  Some of that difficulty was because we hadn’t made arrangements in advance.  Earlier this week, I interviewed Nancy Teten, Assistant Director of the Clinical and Translational Sciences Institute at the University of South Florida.  She coordinates the Byrd Institute Brain Bank here in Tampa Bay, and I talked with her about what you should do if you’d like to donate your brain for research.  Emelyne Cherenfant, a USF social worker and Raelynn Wapinnsky, an intern, sat in on the discussion.

Are We Stifling the Voices of People with Dementia?

When my father was in his late 60s, he started having trouble finding words.  As his memory and thinking went downhill, so did his speech.  I knew it frustrated him, and sometimes I jumped in with a suggestion when he was groping for a word.

     Jackie Hunt Christensen

After talking with Jackie Christensen, I’m not so sure that was a good idea.  I met Jackie last week at the FDA Patient Representative Workshop we both were attending.  She has Parkinson’s, and wrote a great piece in the Washington Post explaining that even though her speech is sometimes halting, she can speak for herself.

Marcel Brasey's Speech at an Alzheimer's Conference

Marcel Brasey

Ten years ago, Marcel Brasey was diagnosed with Alzheimer’s at age 54.  He maintains a French-language website called Survivre avec une maladie d’Alzheimer about his experiences, thoughts and philosophies.

Last month, he traveled from his home in Geneva, Switzerland to give a talk at a La Maladie d’Alzheimer Un Defi Social (Alzheimer’s Disease:  A Social Challenge), a large conference in Paris.

The conference organizers asked him to present the patient’s view, Marcel says, and with the help of his family and a memory clinic in Geneva, he delivered a talk [Download Marcel Brasey's speech].  Congratulations Marcel!

Memory Loss and Home Safety

                    

Heather Black, MS, CCC, SLP & Jack Partington, MA, PT

If you’ve been diagnosed with Alzheimer’s or another dementia, or just have some mild memory loss, simple changes around the house can make your life safer and easier.  This was the topic of a talk given recently by Jack Partington and Heather Black, in-house physical and speech therapists at Freedom Square, a Brookdale Senior Living community here in Florida.