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.

The Musician's Mind Graphic Novel - 4th Strip

click on strip to enlarge

Here's the 4th strip of The Musician's Mind, the interactive graphic novel I've been working on.

Parker's wife Vanessa owns and runs a high-end home design and accessories store called Domesticity.   Since their marriage 25 years ago, Vanessa and Parker have been called “the perfect couple” by their friends. 

Recently, though, Vanessa has begun to think Parker is not paying attention to her or to their marriage.  She is increasingly frustrated at having to pick up the slack when Parker fails to handle the details of their daily lives - this time he's forgotten to deposit the checks he receives for his performances into their bank account.

Is she overreacting?  Do you know of someone diagnosed with dementia whose early symptoms included problems handling finances?

Lakeview Ranch Model Featured in AHRQ Innovations Exchange

My friend Judy Berry's Lakeview Ranch Model of Specialized Dementia Care™ is featured in the U.S. Agency for Healthcare Research and Quality's (AHRQ's) Innovations Exchange.  This publication is a clearinghouse for innovations and tools to improve the quality of healthcare. 

I'm glad to see the Lakeview Ranch model get this kind of endorsement from an agency like AHRQ -- Judy's approach deserves national and international attention.

The Musician's Mind: Need Input on Character Interaction

The Musician's Mind is an interactive graphic novel about Alzheimer's.  The interactive part means that readers can influence the story and characters via blog comments and by “talking” with fictional characters via Facebook, Twitter, online forums, and perhaps some live events.

I’d like to develop and publish some guidelines for this interaction, keeping in mind the sensitivities and potential vulnerability of people with memory loss and their families.  For instance, is it ok to have the fictional characters comment on posts in online support forums?  Ask for advice?  Should they state they are fictional characters in every post?  Should I contact each group leader before posting? 

What are some ways the fictional characters can be supportive of online group members?  What do they need to be especially sensitive about?

Any other considerations?

The Musician's Mind Graphic Novel - 3rd Strip

click on strip to enlarge

In the third strip of The Musician's Mind graphic novel about Alzheimer's, Parker is back home in Chicago, being interviewed for a nationally broadcast public television program. He sticks to his favorite theme of truth and music.

The older I get, the less sure I am about a lot of things.  I don't think this is true with Parker --at 54,  he sees the world in black and white.  Do you think this will change after he is diagnosed with Alzheimer's?

More About The Musician's Mind

click on strip to enlarge

Here's the second strip of The Musician's Mind, the interactive graphic novel I've been working on.  The story is about Parker Sanningham, a concert pianist who is diagnosed with Alzheimer's and disappears at the height of his career. 

In the first strip, he kept the orchestra waiting to start the Friday rehearsal because he couldn't remember how to start the third movement of the piano concerto he would be performing Saturday night.  This was a first for him - he is normally totally in control.

In this second strip, despite his memory glitch on Friday, Parker's Saturday performance is stellar. After the performance, he takes a quick call from his wife Vanessa. He can't talk long, though, because he has to be at a reception for concert hall patrons and donors. At the reception, he explains his theories about the twin truths of math and music.  Awfully sure of things, isn't he?

Question for readers:  should I call this a graphic novel or a web comic?  Which is easier to understand?

Thanks to Penny Peterson for the link to a fascinating and entertaining TED video on creativity and the brain - http://www.ted.com/talks/charles_limb_your_brain_on_improv.html

Biomarkers: Some Thoughts from Richard Taylor

       Richard Taylor, PhD

Note:  as a person with dementia and a retired psychologist, Richard is uniquely positioned to think about Alzheimer's and dementia.  Here are some of his thoughts about what the headlines on biomarkers mean for people with dementia and their families.

Will I "get" Alzheimer's Disease/Dementia? How can I know before even my brain knows, or at least shows any signs of knowing? The answers claim the usual gang of suspects turns out to be in a bag of bodily fluids (mostly blood and spinal fluid), DNA, Genes, and stuff I spilled on myself while eating lunch just before I went in to the "create your own bag of bio markers" get-together.

Change comes and goes fast, very fast. For someone living with the symptoms of dementia the change I have experienced since my diagnosis about nine years ago would even spin the head of someone whose cognitive skills are not slipping. For me, since my skills are slipping and the change is literally overwhelming. Now comes the claim there is a bag of biomarkers that predicts Alzheimer's (or is it dementia) with a 90% accuracy rate, and can predict it way, way before our brain is effected by the biology of dementia (if indeed there is such a freestanding biology).

Introducing The Musician's Mind: A Graphic Novel About Alzheimer's

 
     click on strip to enlarge

I've been working on an interactive graphic novel called The Musician's Mind.  The story is about Parker Sanningham, a concert pianist who is diagnosed with Alzheimer's and disappears at the height of his career.  That's Parker at the piano in the rehearsal room on the right above.

In the first installment, above, Parker Sanningham lingers backstage, while the conductor and orchestra wait to start a rehearsal.  It's the day before an important performance at Carnegie Hall in New York. For the first time, he's aware of having a memory problem -- he can't remember how a piano concerto movement starts. 

I'm calling the graphic novel interactive because I'd like readers' experiences and ideas to influence the story. 

Take a look at the story and the characters.  Would you be interested in following this story?    If so, please subscribe to email updates using the box on the top right of this page.

Would you like to influence the story?  You can do that by leaving comments on this post or on The Musician's mind page.  You can also talk with two of the [fictional] characters, Parker and his wife Vanessa Sanningham on Facebook.  Please "friend" them when you have time!

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.

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.