“New Drug Trial Seeks to Stop Alzheimer’s Before It Starts” (NYT)

The New York Times covered the story of the Colombian family with Alzheimer’s back in 2010. Here’s an updated story about a clinical drug trial starting with family members who do not yet have symptoms but who carry the genetic mutation for Alzheimer’s.


May 15, 2012
New Drug Trial Seeks to Stop Alzheimer’s Before It Starts
New York Times
By Pam Belluck
May 15, 2012

Let’s hope they succeed!

Here’s an accompanying BSN post about this article:


“Gregor Wenning: unravelling the mysteries of MSA”

This is a short article about Gregor Wenning, who is one of the world’s experts on multiple system atrophy (MSA). He is based in Austria.



In Context
Gregor Wenning: unravelling the mysteries of MSA
by David Holmes
The Lancet Neurology – Volume 11, Issue 4 (April 2012)

We all need our hobbies; something to take our minds off the daily grind. For some of us it’s stamp collecting, or poetry, or amateur dramatics. For Gregor Wenning it’s musing on the life of Saint Augustine. “I’m fascinated by this really interesting conversion from a rather loose type to a Bishop”, says Wenning, and it turns out he’s not the only one. “The current Pope is really very much influenced by Augustine”, he explains, “and actually, last year in June, I was received by the Pope and I gave him the three volumes that I’ve published on Saint Augustine. To many people it sounds a bit ridiculous, but to me it meant quite a bit. I find philosophy interesting; it’s one of the things that helps to distract me a little bit”. All of which begs the question: if penning theological treatises is a welcome distraction from the day job, what on earth is the day job?

According to Clare Fowler, of the Institute of Neurology at Queen Square, University College London, UK, “Gregor is at the forefront in world understanding of multiple system atrophy (MSA).” As head of clinical neurobiology at the University of Innsbruck in Austria, “his personal efforts have done a tremendous amount to get us to our current level of understanding about how the condition fits with other neurodegenerative diseases”, Fowler explains. No easy feat, considering the fiendish complexity of MSA. “It has so many clinical facets”, explains Wenning. “It’s not only the pathology that is diverse, but also the clinical presentation. It still happens many times that patients are misdiagnosed as having Parkinson’s disease, and they even have invasive therapies, but in the end it evolves into MSA”. Theological pursuits seem simple by comparison.

Born in 1964, in Horstmar, Germany, Wenning’s first experience of neurodegenerative disease came in the most unfortunate of circumstances. “I entered the field of neurodegeneration through my own family story, because my father actually died of motor neuron disease when I was 15”, he recalls. The family was contacted at the time by the eminent neurologist Albert Ludolph, who was just starting to study motor neurone disease at the nearby University of Münster. A few years later, Wenning would find himself in Ludolph’s department studying for his MD, “looking into transcranial magnetic brain stimulation, which at that time [1985] was a very new and exciting tool.”

More excitement was to come when, in 1986, Wenning spent his first clinical year in London at King’s College. “It was the first time I met Niall Quinn and David Marsden, at the movement disorder clinic, and I actually saw my first MSA patient there, presented by Niall Quinn. That was a turning point, and I decided I would really like to go into these movement disorders.” Quinn recalls his first impressions of Wenning as someone who “stood out, as someone who was very bright, and also naturally very inquisitive. He gave me his CV and a photo and said that if ever I was looking for a research fellow he would love to work for me”. It was an initiative that would later pay dividends.

After graduating from Münster in 1990, Wenning worked briefly at the University of Tübingen in Germany researching ataxia, before being made an offer he couldn’t refuse. “Niall Quinn phoned me up and told me there was a job possibility at the UK Parkinson’s Disease Society to spend a 3-year PhD grant on MSA research, and would I be interested? And I just dropped everything—it was the chance of a lifetime”, he recalls with relish. “To have this exposure in Queen Square; to have all these brains around you; it really set off an enormous amount of activity; different types of projects looking at MSA and working out animal models”. It was during this period that Wenning produced what he calls his “best personal paper”: a description of the clinical features and natural history of 100 patients diagnosed with MSA, published in Brain in 1994.

He also met his future wife, Roberta, during this period; and when the 3 year PhD period was up, the two of them started looking for posts together in Germany. Coincidentally, Werner Poewe had just become head of the department of Neurology at Innsbruck, and he was on the lookout for “youngish people to join him to build up the movement disorder unit”, Wenning recalls. “So my wife and I were offered jobs at Innsbruck and we just decided that’s logic; we have to go there and we’ve been there ever since, 17 years now”.

Not a moment has been wasted. Wenning quickly secured European Union funding to establish a consortium for clinical studies of MSA: the European Multiple System Atrophy Study Group (EMSA-SG), and “his energy and thoroughness meant that the EMSA-SG has really produced a large number of important papers on the topic and clinicians and scientists in Europe forged connections”, says Fowler. Quinn agrees, and credits the EMSA-SG with producing some of the most “important multicentre studies on the clinical features, imaging, natural history of MSA, and also trials of potential disease-modifying treatments for the disease”. Under Wenning’s careful stewardship, his laboratory has now grown to a 20 person multidisciplinary team and continues to go from strength to strength. It will, he says, keep plugging away, looking for disease mechanisms, drug targets, and validating new treatment approaches for a disease that Wenning still describes as fascinating, but one that would test the patience of saints.

For more on EMSA-SG see http://www.emsa-sg.org

Copyright © 2012 Elsevier

“Six Signs Memory Problems Could Be Serious”

Johns Hopkins Health Alerts has a good (but alarming!) list of six key signs that memory loss could be serious. The six signs include:

* difficulty with routine tasks
* getting lost
* loss of recent memory
* forgetting simple words
* poor judgment in financial matters
* mood change

The full article is copied below.



Six Key Signs That Memory Loss May Be Serious”
Johns Hopkins Health Alerts

At least three-fourths of people over age 50 report that their memory is not as good as it was. The reality is that more than 90 percent of those who do complain about memory impairment do not have Alzheimer’s or dementia. Many memory complaints reflect changes in ability over time but appear to be relatively minor and due to normal age-related changes in the function of the brain.

So how do you know if your loved one is part of the minority whose changes in memory are more serious and warrant an evaluation by a health professional?

Red flags. Momentarily forgetting someone’s name or a specific word is actually normal and does not necessarily worsen with age. The following behaviors, in contrast, may be signs that something more serious is taking place.

Difficulty with routine tasks. Trouble completing tasks that a person has done many times before, like figuring out a tip at a restaurant, filling out tax forms or managing a checkbook, is a real reason for concern.

Getting lost. Another red flag is when a person becomes lost while walking or driving in a familiar place, even if the person says the navigational difficulties were due to inclement weather or having to make a big detour. This too is a potential warning sign of early Alzheimer’s or dementia that needs to be investigated further.

Loss of recent memory. Forgetting what you had for dinner the day before or what movie you watched a few hours earlier is not always a sign of normal brain aging. Other warnings include forgetting important dates or events or repeatedly asking the same question.

Forgetting simple words. People with Alzheimer’s or dementia may also have difficulty following or joining in a conversation. They may stop in the middle of a sentence and be unable to pick up where they left off. This is different from the occasional difficulty coming up with a name or word.

Poor judgment in financial matters. It’s not uncommon for people with Alzheimer’s or dementia to buy things they don’t need, to give away significant sums of money to telemarketers or unscrupulous salespeople, or to repeatedly make donations in response to mailed or telephoned requests to legitimate organizations.

Mood change. People with Alzheimer’s or dementia may exhibit confusion, suspicion, fear, depression or anxiety, traits that they never had before.

Finally, when a person regularly complains about poor memory and mentions that it is worsening from the year before, it should be looked into.

“Should You Purchase Long-Term-Care Insurance?” (WSJ)

Caregivers may want to consider purchasing long-term-care insurance for themselves. The Wall Street Journal recently asked two financial planners if people should purchase long-term-care insurance. Here’s a link to the “yes” and “no” responses:


Should You Purchase Long-Term-Care Insurance?
Wall Street Journal
May 14, 2012

Let me know what decision you make!

“Making Alzheimer’s Moms Happy With Just a One-Minute Call a Day”

This is a sweet article by my friend Marguerite Manteau-Rao, LCSW.  She’s a Palo Alto-based social worker who focuses on helping caregivers to those with dementia cope throughout their journey.

In the article, she shares her experience of calling her mom for one minute every day.  Her mom lives in France, so Marguerite is a “long-distance caregiver.”

Her suggestions include:
* Make that daily call
* Call at the same time
* Be fully present when you call
* Pack your talk with emotional goodies
* Don’t get hung up on reality

Here’s a link to the full article:


Making Alzheimer’s Moms Happy With Just a One-Minute Call a Day
Huffington Post
by Marguerite Manteau-Rao, Co-Founder of Presence Care Project
Posted: 05/04/2012 3:43 pm

“Seeking the Line Between Grieving and Depression” (WSJ)

There’s a good article in today’s Wall Street Journal (wsj.com) about whether grieving people are clinically depressed.  The article centers upon the experience and thoughts of Johns Hopkins professor Kay Jamison, who has written about her struggles with bipolar disorder and also lost a spouse.  Ms. Jamison compares grief and depression — both of which she has suffered.

Here’s a link:


Health Blog
Seeking the Line Between Grieving and Depression
Wall Street Journal
By Shirley S. Wang
May 7, 2012, 4:06 PM

Abnormal Proteins and Genetics in Frontotemporal Dementia

Yesterday’s New York Times had a good article on three proteins involved in frontotemporal dementia (FTD) and the research being done at at the University of California San Francisco (UCSF) on these proteins.  Genetics are also addressed in this article.

In FTD, 40% of cases involve tau (which is also part of PSP, CBD, and Alzheimer’s Disease), 50% of cases involve TDP-43, and 10% of cases involve FUS.  There is a genetic component to about half of all FTD cases.

Dr. Bruce Miller at UCSF’s Memory and Aging Clinic comments on how to find those with FTD who are early in the disease course:

“What is so fascinating about this is, what do you define as ‘affected’ in somebody who carries a gene that is going to cause a slow, subtle social decline? What are good markers for someone who is starting to get sick? Addictive behaviors ­ drugs, alcohol, gambling ­ bad decision-making, alienation of other people around them. These are things that we never realized could represent the first symptoms of a degenerative disease.”

Here’s a link to the full article:


May 5, 2012
The New York Times
Studies Tie Abnormal Protein Buildup to Dementia
By Denise Grady

A few excerpts are copied below.



Excerpts from

Studies Tie Abnormal Protein Buildup to Dementia
New York Times
By Denise Grady
May 5, 2012

Scientists think that abnormal protein deposits inside brain cells
cause frontotemporal degeneration. The proteins vary, but they do not
include amyloid, the substance found in Alzheimer’s patients.

In about 40 percent of patients, the deposits are an abnormal form of
a protein called tau, which normally gives structural support to brain
cells. (Tau is also one of the proteins found in Alzheimer’s

Two other types of deposits are abnormal versions of proteins involved
in other cell functions. In about half of all patients with
frontotemporal dementia, the protein is one known as TDP-43, and in
about 10 percent it is a substance called FUS.

But why do these protein deposits form? Often, the underlying reason
is not known.

At least half of all cases are sporadic, in people with no family
history of the disease and no known genetic disorder. About 40 percent
of patients do have a family history, and some may have an
identifiable genetic mutation.

In the remaining 10 percent…the disease is definitely inherited: a
dominant gene makes the symptoms inevitable, sometimes as early in
life as the 30s or 40s, in anyone who inherits a copy from an affected
parent. And each child of an affected parent has a 50-50 chance of
inheriting the bad gene.

So far, most inherited cases have been linked to mutations in two
genes, both on the same chromosome, number 17. One gene codes for tau.
The other gene codes for a protein called progranulin and causes a
deficiency of it, which appears linked to the buildup of TDP-43. Three
other genes are involved in some cases, and researchers are looking
for still more.


“When Illness Makes a Spouse a Stranger”

Yesterday’s New York Times had a terrific general story about dementia turning a spouse into a stranger.  Those within Brain Support Network dealing with LBD, PSP, and CBD may find this article of interest.

It’s the story of a Manhattan-based couple.  Before the husband was diagnosed with frontotemporal dementia in his 60s, the wife was considering divorce.  The wife talks about losing control when dealing with her husband, and grieving though he’s still alive.  Eventually, the wife had to place him in a care facility for both of their safety.  She spends several hours a day with him.

The wife notes that MDs are at a loss to forecast the progression:

“They can tell you everything that’s ever happened to anyone, but they can’t tell you what’s going to happen to you,” she said.

Here’s a touching video about this couple:


Dr. Bruce Miller from UCSF’s Memory & Aging Center is quoted frequently as UCSF is one of the lead institutions in the US for FTD research.  He says:

“I think at least some subtypes of frontotemporal dementia will be the first neurodegenerative diseases we find a cure for.” 

According to this article, there are eight sub-types of FTD.  Sometimes CBD and, less often, PSP are considered FTD sub-types.

The first article has a short mention of Richard Rainwater, who has PSP:

“But even if treatments or cures for frontotemporal dementia do emerge, they will almost certainly come too late for people with advanced cases, like … Richard Rainwater, a billionaire investor who learned in 2009 that he had progressive supranuclear palsy, which some consider a form of frontotemporal dementia. Mr. Rainwater and his family have donated more than $20 million to a research consortium, but given that he has a rapidly progressive form, any advances from the consortium may be more likely to help others than to save him.”

(I assume that if Mr. Rainwater has a “rapidly progressive form” of PSP, this means he has the Richardson’s Syndrome form, which includes dementia as a primary symptom.)

Here’s a link to the full article:


New York Times
The Vanishing Mind
When Illness Makes a Spouse a Stranger
By Denise Grady
May 5, 2012



“Treasures in the Darkness”- new book for early stage LBD

A few of you visit the LBDA Forum (lbda.org). One of the Forum members is “pat,” who is Pat Snyder from North Carolina. In April 2012, her book titled “Treasures in the Darkness: Extended Early Stage of Lewy Body Dementia, Alzheimer’s, and Parkinson’s Disease” was published. It’s for families dealing with early-stages. She said that when her husband John was diagnosed with LBD in 2007, there was no “survival manual” or guidance on handling the early stage. She describes him as still being in the early stage of LBD, five years later.

I’m not sure why AD and PD were added to the title. Perhaps because not many have heard of “Lewy Body Dementia”?

If anyone gets the book and is willing to donate it to the support group after you’ve read it, you are welcome to do so! We have quite a few books circulating among group members — most of the copies have been donated by group members.


Here’s a short description from amazon.com:

“Your husband has Lewy Body Disease. It has elements of Alzheimer’s and Parkinson’s disease.” How do you cope when you hear those horrible words? Are there medicines that can help with symptoms? Is there no hope? If your loved one is in the early stage, there is hope. As a caregiver there are things you can do for a person with degenerative cognitive disease to make your daily lives better. There may even be blessings you never thought could happen to you in this journey. This book is about that very thing. It is real. It happened. Some of it happened because of the choices made by a caregiver who would not settle for a “gloom and doom life is all over” approach. It is a first of its kind. There is no other book that addresses the topic of enhancing and extending the early stage of LBD. If you are an early stage caregiver, this story may help you. It has tips on how to make a difference.

Discovering The True Cost Of At-Home Caregiving (NPR story)

Yesterday, NPR had a terrific series on caregiving called “Family Matters.”  One segment was about the true cost of at-home caregiving.  Here’s a link to the story:


Discovering The True Cost Of At-Home Caregiving
by Marilyn Geewax
Morning Edition [4 min 6 sec]
Part of the Family Matters series
May 1, 2012

The transcript is copied below.



Walk through any nursing home, and your first thought might be: “I need to take care of Mom myself.”

Few people want to turn over a loved one to institutional care. No matter how good the nursing home, it may seem cold and impersonal — and very expensive. But making the choice to provide care yourself is fraught with financial risks and personal sacrifices.

Those who become full-time caregivers often look back and wish they had taken the time to better understand the financial position they would be getting themselves into.

“I used to hear about people saying, ‘Oh you know, we’ve got to put our parents in a home; we can’t deal with it anymore,’ ” said Yolanda Hunter, 43, a Maryland resident who is struggling with her decision to drop out of the human resources field to become a full-time caregiver for her grandmother. “And I used to think: ‘Oh, how cruel are you?’

“You know, but now? I understand,” she said.

Hunter belongs to one of three families being profiled in NPR’s eight-week series, Family Matters: The Money Squeeze, which airs each Tuesday on Morning Edition. Each family is struggling with how to afford care for an older generation. The do-it-yourself approach is both common and costly.

Caregiver advocacy groups say Congress needs to be doing more with tax credits and Social Security benefits to help financially support those who choose to care for the elderly.

The demands for such assistance may grow louder, given the demographic changes coming in our aging society.

Nearly 10 million people over the age of 50 are caring for their aging parents, according to a study conducted by the MetLife Mature Market Institute, in conjunction with the National Alliance for Caregiving and the New York Medical College. The number of caregivers has more than tripled over the past 15 years.

That increase reflects medical advances and the resulting increase in human longevity. As the average age of death has moved from 68 in 1950 to nearly 79 now, the ranks of the elderly have grown. Today, about 6 million U.S. residents are over 85.

As a result, the personal cost of caring for the elderly at home is rising —in terms of lost wages and diminished pension and Social Security benefits, the MetLife study concluded.

Studies estimate that 2 out of 3 informal caregivers are women, many of whom are middle-aged mothers with children or adult children living in their households.

The cost of putting a parent into professional assisted-living care can be daunting. MetLife says that kind of care averages about $42,000 a year. A private room in a nursing home averages more than $87,000. But the cost of keeping a relative at home can be very high too.

The MetLife report said that for the typical woman, the lost wages due to dropping out of the labor force because of adult caregiving responsibilities averages nearly $143,000. That figure reflects the wages lost while not working — typically for about five years — as well as lower wages after returning to the workforce with rusty skills. When foregone pension and Social Security benefits are counted, the out-of-pocket losses roughly double.

“Family caregivers are themselves aging and yet are providing care at a time when they also need to plan and save for their own retirement,” MetLife said. The people who drop out of the workforce “can jeopardize their future financial security,” the study concluded.

Hunter has discovered just that. She quit her job to become an in-home helper for her 89-year-old grandmother, Ida Christian, who has Alzheimer’s disease. Christian lives with her daughter, Geneva Hunter, 66, who runs secretarial operations at a Washington, D.C., law firm. Yolanda Hunter has an apartment a few minutes away from her mother and grandmother.

Like many other caregivers, Yolanda Hunter thought the “job” of watching over her grandmother would not last all that long. Her thoughts at the time she quit her job: “I can do this for a year, help settle things down, try and take the pressure off a little bit,” she said.

Her goal was to find a good home nursing aide to help her grandmother so that she could jump back into the workforce. But two-and-a-half years later, it “didn’t quite work out that way,” she says.

Although Christian’s savings are enough to provide a modest salary for her granddaughter, the amount is not great enough to allow Hunter to prepare for her own retirement.

So Hunter had to switch gears again and begin trying to re-enter the labor market at a time when nearly 13 million other people also were seeking work.

As this year began, she said she recognized that “I desperately want to get back to work, because I’m mentally tired and I feel — unless I win the lottery — I feel like I’m missing out on so much in terms of my future and making sure I have a stable future.”

But then again, “there’s that part of me that is very, very torn about leaving her, because no matter how compassionate the next person may be, they’re not going to do the extra things that you’re going to do,” she said.

Some women’s groups say Congress should expand tax credits available to people with dependent relatives and create “caregiving credits” to limit the Social Security penalty for time spent out of the labor force to provide family care.

The Caregiver Credit Campaign, an advocacy effort, says such help is warranted because without voluntary caregivers, “hundreds of billions of government dollars would be spent on alternatives like institutions.”

An Indiana University report says “informal caregivers provide service that would otherwise cost the Medicare system $375 billion a year.”

Meryl Comer, president of the Geoffrey Beene Foundation Alzheimer’s Initiative, knows about the financial penalties of caregiving. At age 50, she was a journalist, living in a Maryland suburb outside of Washington, D.C. Then her husband, age 58 at the time, was stricken with early-onset Alzheimer’s.

She quit her job to become his at-home caregiver. Then her mother got Alzheimer’s too. Now, 18 years after quitting her outside-the-home job, she continues to care for her husband and elderly mother.

She argues that corporations should do more to help their employees handle adult-care needs while staying on the job.

“How do we do provide flex time for people who are taking care of their parents?” she asked. “The human resources policies [for caring for the elderly] need to mirror the child-care policies,” she said. “If corporations want women to be productive in the workforce, they have to make some accommodations,” such as allowing them more flexible schedules, family-leave time and telecommuting opportunities.

Comer said corporations have come a long way over the past 30 years in terms of responding to the needs of working mothers with young children. “Now they have to do the same for the other end of the age spectrum,” she said.