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. 

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.

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.

 

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.

Fading From Memory: Book Review

When I first started blogging, there was a small group of us exchanging stories about caring for parents with dementia through our blogs.  Mike Pritchard in Sydney, Australia, joined that group in 2006.  Both of his parents were diagnosed with Alzheimer’s and his blog Fading From Memory chronicled his family’s struggle to care for them.

More than two years after his parents died, Mike has published Fading From Memory: what happens to a family when both parents have Alzheimer's? in book form.  It’s an unflinching look at the sometimes dreary realities of the end of life.

Early in the book, he includes his mother’s journal entries about the family’s emigration by boat from England to Australia.  He tells how they traveled the world, living on every continent and following his father’s work in the aviation industry.  To Mike, his parents seemed larger than life, until suddenly they weren’t.

“I never expected my parents to be immortal,” Mike writes, “but to see them now, two slow-moving stooped old people, unkempt and inarticulate, pottering around their unnecessarily dark house, arguing about cups of tea, is sometimes unbearably sad….  Where did all that life go?”

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.

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.

 

Cathie Borrie's Books: The Wisdom of Dementia

When you read Cathie Borrie’s book looking into your voice: the poetic and eccentric realities of alzheimer's, you’ll find the wisdom of dementia in her mother’s words.  When Cathie asks her mother what love is, she says “it’s the sublime felt between two people in the same working order.” 

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.

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.

What's the Best Alzheimer's Care? Disappointing Results from a French Study

Summary:  A recent French clinical trial found that a standardized special care plan at memory clinics did not help people diagnosed with Alzheimer’s maintain functionality.  Other approaches or care plans might be more successful, but have not been tested in a study of this size.

There is a great need for the kind of research carried out by this French team.  The worst thing that could happen is that the negative results of this trial give governments, healthcare professionals and laypeople the impression that care doesn’t matter.

What should be the gold standard for the care of people diagnosed with Alzheimer’s?  And who should provide that care?  A team of researchers led by Dr. Fati Nourhashémi at the University Hospital in Toulouse, France set out to answer those questions.

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.

Johnson & Johnson Risperdal Kickback Allegations

Last week, the New York Times published an article about a U.S. government complaint that Johnson & Johnson paid kickbacks to the biggest nursing home pharmacy in the U.S. to increase prescriptions of the antipsychotic Risperdal and other drugs.  On her blog ElderCareTalk, Laura Bramly has posted a great analysis of what this means for people whose family members are in memory care units.

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.