The Tangled Neuron

Alzheimer’s Disease and Other Dementia: The Caregiver’s Complete Survival Guide

If you’re caring for an elder with dementia, it helps to have an experienced social worker and geriatric care manager like my friend Nataly Rubinstein to help you through the daily challenges.  If you can’t have Nataly by your side 24/7, her guide,  Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide, is the next best thing.

Caring for her mother, who had dementia, inspired Nataly to write this book.  “If I had better guidance – like what is in this book,” she writes, “my life, her life and my family’s life would have been better and easier.” 

Based on her experience with thousands of clients in South Florida, as well as years of caring for her own parents, Nataly’s 360 page guide is a comprehensive look at what it takes to be a caregiver.  Using real life examples, she walks you through everything from getting a diagnosis to dealing with unwanted behavior.  Along with daily challenges like eating, dressing and toileting, she covers finances, long distance caregiving and hiring professional caregivers.

Her careful attention to the needs of people with dementia and their caregivers makes this guide a valuable resource for you’ll turn to again and again.

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. 

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?

Staying Afloat in a Sea of Forgetfulness: Book Review

When my father first showed signs of memory loss, I looked to professionals for answers and cures.  Years after his death, I look less for answers and cures, and more for ways to make sense of dementia.  Maybe this is why I’m drawn more to books about personal experiences right now. 

Gary Joseph Leblanc’s book Staying Afloat in a Sea of Forgetfulness: Common Sense Caregiving Expanded Edition is one of those books.  Based on his newspaper column “Common Sense Caregiving,” the book is Gary’s way of making sense of dementia and caregiving after more than a decade of caring for his father.

 A book dealer by trade, Gary surely loves a dramatic story.  That’s not what this book is, though.  Each brief, easy-to-read chapter offers common-sense solutions to problems caregivers may face.  He deals with everything from sleep disturbances to incontinence to embarrassing behavior in a straightforward (perhaps even manly!) way.

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!

Memory People

Those of you on Facebook may want to check out a new free online support group called Memory People.  People with dementia, caregivers and advocates may join - I've posted instructions here.

Talking About Dementia - Ideas Needed

Have an idea about or experience in talking about dementia (yours or someone else’s)?  Please consider sending it to Stand Up Speak Out, a collaboration among Richard Taylor, Laura Bramly and Alzheimer’s Disease International. 

A Look at The Penelope Project

After watching this short video from Anne Basting's Penelope Project, I'm doubly sorry I couldn't be there.