The Tangled Neuron

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.

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.

 

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.

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. 

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.

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.

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.