The Tangled Neuron

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.

New Change of Shift

Change of Shift is up at RehabRN, with a vacation theme.  The posts included in Change of Shift are always a good reminder of the realities of the nursing profession.

Grand Rounds is Up

Grand Rounds is up at florencedotcom, a blog about fixing health care.  This week's Grand Rounds has links to blog posts on diabetes, brain fitness and health care reform - all of interest to people with memory loss.  Happy reading!

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.

Axona: A Different Approach to Alzheimer's

Summary:  Axona is Accera’s new product for people with mild to moderate Alzheimer’s.  Available in the U.S. by prescription only, Axona is marketed as a medical food.  This means it was not subject to FDA pre-market review and approval.  Results of the company’s trials of Axona sound promising, but we’ll have to wait for more data to be published to get a better idea how effective the product is.

Suddenly, Axona is everywhere.  I heard people talking about it at a local Alzheimer’s educational event last week.  There’s an advertisement for it on the back cover of the latest edition of the Alzheimer’s Foundation of America’s magazine, care ADvantage.   Accera, the company that developed Axona, is also a silver sponsor of the Alzheimer’s Association’s upcoming ICAD conference.  

Axona is designed to address the “hypometabolism,” or reduced use of glucose, seen in some areas of the brains of people with Alzheimer’s.   Glucose is the brain’s source of energy.  Axona is formulated as a powder, and is mixed with water to make a once-a-day drink. 

The product is unique in its approach to Alzheimer’s and in Accera's choice to market it as a “medical food.”  I talked last week with Steve Orndorff, Ph.D., founder and CEO of Accera, to get more details.

Dementia with Lewy Bodies Webinar

The Alzheimer Research Forum is hosting a webinar on scientific aspects of Dementia with Lewy Bodies on Monday June 15th at noon eastern time.  Working with the Lewy Body Dementia Association (LBDA), the Forum has collected caregiver and family questions in advance of the webinar.  Webinar panelists and the LBDA will work to answer those questions offline, after the webinar.

I hope some day memory loss patients and their families will work more closely with researchers, as is happening with some cancer research.  This webinar is a step in the right direction!

Expert Consensus on Brain Health

Expert Consensus on Brain Health, a statement issued by researchers from the Stanford Center on Longevity and  the Max Planck Institute for Human Development, gives a great summary of the science (or lack thereof) behind supplements and programs marketed for brain health.  More than 30 experts from Stanford, the Max Planck Institute and other institutions signed the statement.

While there are things that can be done to improve brain health and mental fitness, they say, there's not enough evidence to support the claims of many supplements and programs.  Physical exercise and maintaining overall health are important for cognitive fitness.  More research is needed to see if various products promoted for brain health are effective.

A Place Called Canterbury: Book Review

Some of my readers have a dim view of assisted living and skilled nursing facilities.  Their opinions are based on the experiences of friends and relatives.  They’re not keen on old age, either.

Dudley Clendinin, in his book A Place Called Canterbury: Tales of the New Old Age in America, presents a more nuanced view of both assisted living and old age.  The book is based on his experiences at Canterbury Tower, a “life care” community here in Tampa Bay.  His mother moved to Canterbury after the death of her husband, and lived there for 13 years.  She needed nursing care for almost ten of those years.  Through that decade, Clendinin stayed at Canterbury on and off, first in his mother’s apartment, then renting a guest room, and finally staying in one of the resident’s spare bedrooms (she was glad for the company). He was in his 50s; the average age at Canterbury was 86.

Mild Cognitive Impairment in Parkinson's?

Alexander Tröster, Ph.D.

There is a growing recognition that people diagnosed with Parkinson’s disease may have cognitive impairment in addition to their physical symptoms.  Another report from the Mild Cognitive Impairment (MCI) Symposium covers Dr. Alexander Tröster's presentation on the challenges in considering MCI in someone with Parkinson's.

Lewy Body Disease and MCI

  Brad Boeve, MD

At autopsy, pathologists often find Lewy bodies in the brains of people who had Mild Cognitive Impairment (MCI).  But doctors may be able to tentatively diagnose Lewy body disease in MCI patients when they're still living.  Check out a summary of Dr. Brad Boeve's presentation from the Mild Cognitive Impairment Symposium for details.

AFA's Alzheimer's Prevention Site

     Eric J. Hall

The Alzheimer’s Foundation of America (AFA) recently launched its Alzheimer’s Prevention web site.  The new site, with information on brain health, risk factors and lifestyle choices, expands the AFA’s focus on care to include caring for oneself, says Eric Hall, President and Founding CEO.

Why would an organization focused on care launch a prevention effort?  If you look at the numbers and where the scientific research is, Eric says, it makes sense.  “We discussed this issue with both presidential campaigns,” he says, “and told each of the candidates that if he served two terms, he could expect 2.5 million more Americans to develop Alzheimer’s during his presidency.  That’s in addition to the 5.5 million who have it now.  We know we don’t have the infrastructure to care for all these people.”

An Unforgettable Fund Update

Over on the east coast of Florida, Patty Doherty has been raising money to support Alzheimer's research through The Unforgettable Fund.  She and her supporters are funding two more interns in Malcolm Leissring's lab at Mayo Clinic in Jacksonville.  Check out her blog to learn more!

The Alzheimer's Project: A Four Part Documentary

The Alzheimer's Project, a new four part documentary on Alzheimer's, will air on HBO May 10-12.  My friend Chuck Jackson and his care partner Marianne will be featured in the Caregivers segment.  There is also a segment more focused on people with memory loss, one on science and one hosted by Maria Shriver on what it feels like to be the child or grandchild of someone with Alzheimer's.

These segments, along with 15 supplemental films and a glossary, will be available on the HBO site after May 12th.  A companion book is in the works.

The HBO site says this project is "changing the way America thinks about Alzheimer's disease."  We'll see if these documentaries really help us take a fresh look at memory loss.