The Tangled Neuron

Speaking Our Minds: Book Review

Thoughtful.  Dignified.  Funny.  That’s how I would describe the seven people profiled in the new edition of Lisa Snyder’s Speaking Our Minds: What It's Like to Have Alzheimer's.  Lisa is a clinical social worker at the University of California, San Diego’s Shiley Marcos Alzheimer’s Disease Research Center, and the editor of the Perspectives newsletter.

There’s not a lot about loss of self or long goodbyes in the stories of these seven men and women.  In their own words, they tell how Alzheimer’s has changed their relationships, their daily routines and their philosophies.  Lisa’s own narrative, woven around each story, adds context.

You can read Lisa’s thoughts on what we can learn from people with Alzheimer’s and why she published this revised edition in our Q & A with Lisa Snyder.

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. 

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.

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.

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.

Mike Donohue Reports on Early Stage Needs

All too often, people are diagnosed with early stage Alzheimer’s or other dementias, then sent home with little advice on what to do next.  Although many of their capabilities are still retained, their cognitive problems can affect their social and family lives and make it difficult to work or volunteer.  Unless they live in an area that has early stage support groups, there are few resources available to them to help with these issues.

Mike Donohue

Mike Donohue, a blogger diagnosed with Alzheimer’s three years ago, participated recently in a panel discussion addressing early stage needs.  He and other panelists presented concrete recommendations for resources they feel should be available:

• First Stop Programs: A place where patients just diagnosed can come and learn how they and their families can deal with AD (Alzheimer’s disease) from those of us with it.

How Do People React to a Diagnosis of MCI?

         William Haley, Ph.D.

In my last report from the Mild Cognitive Impairment (MCI) Symposium, I wrote about research on disclosing a diagnosis of dementia.  But what if the diagnosis is MCI, not dementia?  Bill Haley, Professor at the School of Aging Studies at the University of South Florida, gave a presentation focusing specifically on this topic.  This next report summarizes his presentation on recent USF research in this area.

Disclosing a Diagnosis of Dementia

Alexandra Zaleta and Brian Carpenter, Ph.D.

My last few reports from the Mild Cognitive Impairment (MCI) Symposium were about the symptoms seen in people with MCI and the conditions that may underlie it.  These are researchers' views.  But what do patients think about MCI?

There were no patients or family members at the Symposium, but two presentations began to deal with that question.  The first, by Brian Carpenter, Associate Professor of Psychology at Washington University, was about disclosing a diagnosis of dementia.  Dr. Carpenter and his colleagues (including Alexandra Zaleta, a graduate student pictured here with Dr. Carpenter at the MCI Symposium) have been examining how doctors tell patients and families about a diagnosis, and what patients and families hear.  You can find details of his presentation in the latest report from the MCI Symposium.

Camp Building Bridges

Now in its second year, Camp Building Bridges is a camp for children ages 13 to 17 whose parents or grandparents have dementia.  The camp provides education and support for these teens, as well as a break from their daily worries.  This year's camp is July 19-25 at Camp Takatoka in Chouteau, Oklahoma.

The camp is the brainchild of Allen and Tracy Mobley (Tracy has dementia), who want to help children like their son Austin deal with the challenges of living with a family member with dementia.  This year, the camp is a project of the Oklahoma/Arkansas chapter of the Alzheimer's Association.

Some needs-based scholarships are still available.  For more information, contact Tracy and Allen at 417-933-2030 or tiger@centurytel.net.

Appreciation and Respect for People with Memory Loss

A lot of our conversations about memory loss include phrases like “fight against this terrible disease” and “loss of sense of self.”  When I talk with people who have mild to moderate memory loss, though, many are more positive about their lives.  They mention how much they enjoy gardening, the arts, animals, family and friends.  Some say the “silver lining” of their memory loss is that they’ve become more appreciative, more spiritual and more able to live in the moment.

This less fearful view is starting to be reflected in the media.  Last year, Newsweek published a piece about “pleasant dementia.”  A recent Speaking of Faith interview and a new book by Dr. John Ziesel also present some positive aspects of memory loss.

Paul Whitby's "Memory Book"

Paul Whitby

I’ve written before about cognitive rehabilitation for people with memory loss.  Researchers at the University of Miami are conducting clinical trials in this area, and people like Morris Friedell are conducting their own informal programs.  Paul Whitby, a clinical psychologist working in the National Health Service in England, has been teaching a memory rehabilitation class for professionals for several years now.

“I reckon that a lot of our nurses still think that if somebody has dementia then there is no point telling them anything because they won't remember it,” he says.  “I try to work on the notion that if you have dementia (or any other memory problem), then there is all the more need to put a bit more effort into telling you things carefully and in a way that will stick (Spaced Retrieval) and making important information obvious, ready to hand and easy to use (calendars, notebooks).”

Paul has put together a Memory Book of practical ideas to encourage people with memory loss and their care partners to try rehabilitation.  The booklet also has tips on coping mechanisms. 

New Cognitive Fitness Center

The Alzheimer Research Forum has an interesting article on a new "cognitive fitness" center run by University of California Santa Barbara researchers.  Among other things, the center will test whether a personalized program of multiple lifestyle changes can prevent or delay memory loss.

According to the article, one of the priorities for the center is to find funding for the center's services by showing that the services decrease medical costs.  If the annual membership fee of $4000 is representative of the cost of programs per person, this could theoretically be offset if the person could avoid prescription medicine, doctor's visits and care costing $333 per month or more. 

Are You at Risk for Drug Interactions?

Summary:  A recent study suggests that some older adults are at risk for potentially dangerous drug interactions.  Make sure your doctor and your pharmacist are aware of all the supplements, prescription and over-the-counter medicines you take, and ask them to check for potential interactions.

In online forums and at meetings, I hear people with memory loss talk about the medicines and supplements they take.  It’s not unusual for them to reel off a list of several prescription drugs and twenty or more supplements.  Could the combination of some of these medicines be dangerous?

Dima Qato, PharmD, MPH

Potential drug interactions are a concern for everyone, not just for people with memory loss.  Late last year, the Journal of the American Medical Association published an article by Dr. Dima Qato and her colleagues at the University of Chicago on the medicines older Americans take.  The researchers catalogued the drug use of over 2200 people across the U.S., ages 57 through 85.