Apr 30, 2012

UC Davis Researchers Create Molecule that Blocks Alzheimer's

As a result, the molecules have great potential as a therapeutic agent to prevent or delay injury in individuals in the earliest stages of Alzheimer's disease.

Alzheimer's Reading Room

John Voss
UC Davis researchers have found novel compounds that disrupt the formation of amyloid, the clumps of protein in the brains of people with Alzheimer's disease believed to be important in causing the disease's characteristic mental decline.

The so-called "spin-labeled fluorene compounds" are an important new target for researchers and physicians focused on diagnosing, treating and studying the disease.

The study, published today in the online journal PLoS ONE, is entitled "The influence of spin-labeled fluorene compounds on the assembly and toxicity of the Aβ peptide."

Learning How to Use Alzheimer's World to Your Advantage

The goal is to learn how to understand, cope, and communicate with someone that is deeply forgetful.

By Bob DeMarco
+Alzheimer's Reading Room

Learning How to Use Alzheimer's World to Your Advantage
My Alzheimer's Caregiver
Some of you will recall that I went away for two days in January and left Dotty with the A Team -- Jim and Ruth. Dotty did wonderfully well.

I talked to Dotty on the phone about 6 times, and she seemed happy and content. All seemed to be going well, except Ruth told me that Dotty was asking with increasing frequency where I was. This meant increasing angst.

I should mention this. When Dotty is with Jim and Ruth she is rarely alone. They talk to her and include her in on everything they do. Aha.

Dotty gets lots of attention, and Food.

Apr 29, 2012

Beers Criteria for Potentially Inappropriate Medication Use in Older Adults

Because older adults often experience chronic health conditions that require treatment with multiple medications, there is a greater likelihood of experiencing unwanted drug side effects.

Alzheimer's Reading Room

A wide range of medications—some relatively new and others long available—can cause serious side effects and other adverse events in people 65 and older if not prescribed with care, according to the new American Geriatrics Society Updated Beers Criteria for Potentially Inappropriate Medication Use in Older Adults.

The criteria, last revised in 2003, appears today in the early online edition of the Journal of the American Geriatrics Society, and is available, with additional professional and public education materials, at www.americangeriatrics.org.

I think you will be very surprised if you take the time to review this information.

AGS Beers Criteria Summary - For Patients & Caregivers
Ten Medications Older Adults Should Avoid or Use with Caution
Criteria & Evidence Tables
Beers Criteria Pocket Card

Rampant Use of Antipsychotic Drugs in Nursing Homes Exposed

The data show that in more than one in five nursing homes in the United States, antipsychotics are administered to a significant percentage of residents despite the fact that they do not have a related condition that warrants their use.

Alzheimer's Reading Room

A Boston Globe investigation has found that roughly 185,000 nursing home residents in the United States received antipsychotics in 2010 contrary to federal nursing home regulators’ recommendations.

The government finally provided the data to the Boston Globe, 19 months after the newspaper submitted a Freedom of Information Act request.

The data show that in more than one in five nursing homes in the United States, antipsychotics are administered to a significant percentage of residents despite the fact that they do not have a psychosis or related condition that nursing home regulators say warrants their use.


I started out by experiencing the actual caregiving: the joys of seeing that someone who could no long express it, still loved me; the pleasure of putting a moment of happiness, a fleeting smile, on a pained face; the feeling of worth that comes with helping someone with kindness even when I was tired in the middle of the night.

By Max Wallack
Alzheimer's Reading Room

I know I feel “chosen”.

I feel the responsibility to do something for Alzheimer’s patients and their caregivers. Is this why I was given the experience of caring for Great Grams, starting when I was only six? Maybe.

Maybe it was so that I would understand the huge importance of my calling. And, yes, I do feel that helping the deeply forgetful and their caregivers is my calling.

Apr 28, 2012

Name First Memory Cafe Dallas

Pat Sneller, Carole Larkin, and friends have been working very hard to start a new Memory Cafe in Dallas. They are seeking input, advice, and a good recommendation for a name.

By Carole B. Larkin
Alzheimer's Reading Room

My friends and fellow advocates for families with dementia would like your opinion. We are starting a new Memory Cafe in Dallas, Texas, and we need a good name.

We are a small group of Alzheimer's professionals and Pat Sneller, the spouse of a man with early onset Alzheimer's. Pat is also a dedicated ARR reader!

In Pat's words:

We just want to get together, have coffee, tea or snacks and chat with one another. No agenda, per se.

Living with Childhood Alzheimer's

Is Cyclodextrin the answer?

Alzheimer's Reading Room

There are only 500 known cases world wide, 100 in the US. Slowly, these kids lose everything.

"All these little things that we take to function, you don't realize until they're taken away," says Laura.

The Hadley's decided they had to do something, so they started the Hadley hope fund - raising money for research. Recent scientific discoveries are giving them hope.

About a year ago the 14 and 11 year old were put on Cyclodextrin, an experimental drug that actually slows the disease.

Bryan states, "They seem to be holding their own, they're not degenerating any more."

Apr 27, 2012


By Claudia Marshall-Apers
Alzheimer's Reading Room

Here it is, the first ever online interactive guide to Alzheimerese.

Alzheimipedia includes phrases and words that are spoken in Alzheimer's World and what they actually mean in “Real World”. There can be multiple meanings to any given phrase. Like Wikipedia, entries can be made and adjusted by experts in the field (that means you, the caregiver).

I'll start us off with a few entries.

Apr 26, 2012

The Aesthetic Life

I guess I've learned to pay attention to what my mom remembers. That helps me know what really matters to her.

By Claudia Marshall-Apers
Alzheimer's Reading Room

Did you ever wonder why the deeply forgetful can remember some recent events and future plans but not others? I wonder that all the time.

Why do some memories form while others fail? Hmmm.

When I was learning how to teach art to elementary school children, I had to learn how we learn, how we remember and how we know.

It turns out that we “know” in many more ways than we would expect.

Did You Miss Me, This Time?

I would have to say thank you to Cathy Greenblat. By inviting me to New York and asking me to participate, you forced me to think and feel in a new and different way.

By Bob DeMarco
Alzheimer's Reading Room

I missed you.

Things have been choppy here on the Alzheimer's Reading Room the last several days as I prepared to go to New York and speak at Pace University. I'll have a lot to say about what I learned about and about my own experience in the coming days.

I was pleasantly surprised as a large bunch of readers came to Pace to attend my workshop, and many stayed to hear me speak with a group of very talented people that included Richard Taylor, who I met in person for the first time.

Apr 25, 2012

Translating Alzheimer's for Others

“Does Audrey have her hearing aids in?”

By Pamela R. Kelley
+Alzheimer's Reading Room

Translating Alzheimer's  for Others

If you’ve been a reader of The Alzheimer’s Reading Room for any period of time, you know Bob DeMarco’s Venn diagram depicting the overlap between the ordinary world and Alzheimer’s World.

It’s shaded at the sweet spot where we as caregivers sometimes reside, where we understand our roles as care partners better. We learn to communicate more effectively because we’ve gained some compassionate skills while adapting to the challenges dementia imposes.

When my mother moved to an assisted living facility for those with memory loss, I began to see that it wasn’t enough for just me to inhabit the sweet spot. My mother’s care was being shared now with others.

All these new people would have a very different perspective on my mother, Audrey, since they’d not known her essential nature before Alzheimer’s arrived. I had to hope they’d give her the benefit of the doubt when she was being hostile, insulting, degrading or worse.

Apr 24, 2012

Alzheimer’s and Spousal Affairs

What are your thoughts on Alzheimer’s spouses who have affairs and justify their behavior by saying, “Well, they have Alzheimer’s and they don’t know?”

By Barbara Pursley
Alzheimer's Reading Room

Alzheimer’s and Spousal Affairs
Yesterday, I couldn’t help becoming intrigued by the table discussion I listened to. (I have changed names for the sake of privacy)

I visited my friend, Mary, and her mother, Alice, who has lung cancer. When I asked Alice about our mutual friend Joyce, she was quick to give me all the details of Joyce’s life. As we sat at the table, Mary was involved in painting driftwood that we had collected on the beach and I was focused on knitting a scarf, but my ears were opened for listening.

Little did I know that asking Alice about Joyce would lead into a conversation that would cause me discomfort.

Translating in Alzheimer's World

“What’s she doing?”
“What did she say?”
“What do they think, that I’m dumb?

By Pamela R. Kelley
Alzheimer's Reading Room

When I hear my mother, Audrey, ask these sorts of questions, I know she needs me to translate. I translate the world.

I translate what she sees and hears and imagines from something upsetting to something understandable.

She trusts me. She trusts her friend, Sue. She trusts anyone in a clerical collar. But that’s it.

She’s on guard around all others, and suspects that they dislike her. She announces her suspicions loudly and emphatically. She can be seen as difficult.

Alzheimer’s and the Truth from Both Sides

Truth is a funny thing. There is truth in ‘our world’ and there is truth in the ‘Alzheimer’s World.’ Which is the ‘real truth?’

By Carol Blackwell
Alzheimer's Reading Room

Definition of truth.

Alzheimer’s and the Truth from Both Sides
(1) : the state of being the case : fact

(2) : the body of real things, events, and facts : actuality

(3) often capitalized : a transcendent fundamental or spiritual reality b : a judgment, proposition, or idea that is true or accepted as true c : the body of true statements and propositions 3a : the property (as of a statement) of being in accord with fact or reality
Truth is a funny thing. There is truth in ‘our world’ and there is truth in the ‘Alzheimer’s World.’ Which is the ‘real truth?’

It depends on which world you are in, I think. What is ‘real’ to me is not necessarily ‘real’ to my husband, Bob. The truth of both worlds is that we love each other and are trying to do what is best for each other.

Apr 22, 2012

Using the Montessori Approach to Support the Elderly

In this illuminating workshop, learn how the Montessori Method is being used in cutting-edge ways to support memory function and improve the quality of life in aging populations.

Alzheimer's Reading Room

Tom and Karen Brenner
Being curious, finding joy in accomplishment, helping a friend, learning new skills.

Whether you are 3 or 83, these human capabilities foster a sense of purpose.

In this illuminating workshop, learn how the Montessori Method is being used in cutting-edge ways to support memory function and improve the quality of life in aging populations.

Learn more about aging, Alzheimer’s, and dementia, and applications for Montessori materials and activities that are bringing joy and vitality to new generations.

I wanted to make those of you that might be interested aware of this upcoming webinar, Using the Montessori Approach to Support the Elderly, by Karen and Tom Brenner.

The webinar is scheduled for Wednesday, May 16, 2012 7 – 8:30 PM (ET). If you are interested go here to get the registration details.

No Is Just the Easiest Word to Say

Dear Pdy, my mother told me to get out, and told me she didn't need me thousands of times. I know how much it hurts to hear those words.

By Bob DeMarco
Alzheimer's Reading Room

Today we received the following comment from Pdy under the article, Communicating in Alzheimer's World.

Okay, so I get what I've just read. BUT - what do you do, and how do you handle it when the patient REFUSES to take her medications, consume fluids or do any activity. It's "HER" house and nobody is going to tell her what to do. So - I get into her world...but how do I convince her to do what is best for her when she doesn't know what that is anymore?

Pdy, I'll start by saying, I confronted the same problems. In addition, I have been asked this question hundreds of times -- why do Alzheimer's patients say NO (all the time).

I conducted a poll on the Alzheimer's Reading Room and seventy two (72) percent of the those who responded chose "Yes" when asked if they were confronted with this problem -- the dreaded "No".

Apr 21, 2012

Alzheimer's and Dementia Science News 135

Guide dogs for the mind, the holy grail, and more.

Alzheimer's Reading Room

Guide dogs for the mind to fight dementia -- Alzheimer's Scotland
Animals will help Alzheimer's patients remember their medicine and steer them through the day.
Read More

Elan (ELN) chases a holy grail of Alzheimer's treatment: Prevention -- Fierce Biotech
After struggles to develop an effective remedy for Alzheimer's disease, Elan's (ELN) support of research at Cambridge University could unlock targets for a drug that offers a preventive treatment for the memory-stealing disease and other illnesses involving misfolding proteins in the brain.
Read More

Alzheimer's Disrupts Brain Networks

Precise measurement of changes in brain networks are critical to understanding Alzheimer's and will likely be important in models of other neurodegenerative disorders.

Alzheimer's Reading Room

I found this research interesting because the focus is on the brain as a network. One of the problems in dementia is the disruption of the functional connectivity of brain regions.

Earlier today I wrote, Alzheimer's and Learning How to Trust, and basically what I was saying is that Dotty compensates for these disconnects by stringing together diverse information in her brain and weaving some rather "tall tales".

In my story about my brother, Billy, I mentioned that Dotty talked to him on the phone. Not long after, she told someone he had come into the condo, looked around and gone back home. So you could say, she remembered talking to him and that was about it. The rest of the story was made up. It almost seems like she grabs a few pieces of a puzzles and puts them together. Not tightly like when you are doing a puzzle, but pulls them together into a jumble to make a story. To us the jumble makes no sense, but to Dotty the same jumble makes perfect sense.

Understanding of the diverse parts of the brain network could lead to a better understanding of Alzheimer's, and a possible treatment.

Apr 20, 2012

I Would Rather Be Lucky Than Smart, Dotty Gets a New Doctor

Then I say, can you give her a shot of penicillin in the butt? I might have said ass. He laughed and asked why? I say, penicillin is magic and it will kill some other infections if they are lurking around.

By Bob DeMarco
Alzheimer's Reading Room

For those of you that have been around for a while, you already read about how it took me 14 months to find a good personal care doctor for Dotty. I am referring back to the very beginning, 2003.

Doctor number one, "she's getting old". Fired. Doctor number two, "she's getting old". Fired.

Doctor number three, she has Alzheimer's. No MRI, no serious effort to rule out other possible causes of her symptoms. Doctor number three actually flipped the prescription for Aricept to me. She didn't get fired on the spot.

Ever hear the term, I'd rather be lucky than smart. Well, that is how we got doctor number 4. The wonderful, now deceased, Dr. Carlos Chiriboga. I could say a lot of wonderful things about Doc Chiriboga. But I think this sums it up. Question: did you know Dr. Ciriboga? No, but I heard about him. Then the answer to the question: They say he was the best, a wonderful man.

How did I find Dr. Chiriboga?

Recommendations of the Advisory Council on Alzheimer's Research, Care, and Services

Health and Human Services (HHS) should launch a nationwide public awareness campaign to increase awareness and to promote early detection of Alzheimer’s disease.

Alzheimer's Reading Room

On April 16, the Alzheimer's Advisory Council approved a comprehensive set of recommendations that would, if accepted by the Department of Health and Human Services (HHS), complement the current draft of the National Plan to Address Alzheimer's Disease.

The National Alzheimer's Project Act (NAPA) was passed unanimously by Congress and signed into law by President Obama.

The current list of recommendations can be seen below

Apr 19, 2012

Alzheimer's and Dementia News 133

Misbehaving Protein, Chores, ‘Catastrophic’ Brain Injuries, Brain Networks, Change

Alzheimer's Reading Room

Can Household Chores Help Prevent Alzheimer’s -- Time?
The study, which was published this week in the journal Neurology, included 716 dementia-free men and women in their 70s and 80s. Compared with the most active people, those with the lowest levels of overall physical activity had more than double the risk of going on to develop Alzheimer’s.
Read More

Misbehaving Protein May Provide Clue to Alzheimer’s Drug -- Bloomberg
Cholesterol-lowering statins like Pfizer Inc. (PFE)’s Lipitor work to prevent heart attacks, which damage heart muscle in ways that can’t be repaired, Vedruscolo said. Similarly, in Alzheimer’s disease, a drug targeted at preventing the characteristic abnormal proteins of the disease may ward off brain cell death and resulting memory loss.
Read More

Pat Summitt to Receive Presidential Medal of Freedom

President Barack Obama announced Patricia “Pat” Summitt, former head coach and current head coach emeritus of the University of Tennessee’s women’s basketball team, as a recipient of the Presidential Medal of Freedom.

Alzheimer's Reading Room

Pat Summitt
The Medal of Freedom is the Nation’s highest civilian honor, presented to individuals who have made especially meritorious contributions to the security or national interests of the United States, to world peace, or to cultural or other significant public or private endeavors.

President Obama said,
“Coach Summitt is an inspiration – both as the all-time winningest NCAA coach, and as someone who is willing to speak so openly and courageously about her battle with Alzheimer’s. Pat’s gift has always been her ability to push those around her to new heights, and over the last 38 years, her unique approach has resulted in both unparalleled success on the court and unrivaled loyalty from those who know her and those whose lives she has touched. Pat’s coaching career may be over, but I’m confident that her work is far from finished. I look forward to awarding her this honor.”

Apr 18, 2012

Daily Physical Activity May Reduce Alzheimer’s Disease Risk at Any Age

The research found that people in the bottom 10 percent of daily physical activity were more than twice as likely (2.3 times) to develop Alzheimer’s disease as people in the top 10 percent of daily activity.

By Bob DeMarco
Alzheimer's Reading Room

Dotty at 89
She looks better now
doesn't she?
I read about the research below with great interest. Great interest for a simple reason. The first decision I ever made in regards to my mother and her condition was to take her into the gym. Into the gym for the first time in her life at the age of 87.

I used the words "in regards to my mother and her condition" because I made that decision before she was diagnosed with probable Alzheimer's disease. I made that decision while I was doing an enormous amount of research, up sometimes until 3 AM.

I made the decision based on the positive affects that exercise has on the brain even in people that are "old". There was very little research on Alzheimer's and exercise at the time, some, but not much.

I also made the decision to go into the gym because I already understood that I was going to need an enormous amount of energy to care for my mother, and I needed a way to reduce the stress that comes along with caregiving.

At the time my mother was getting up in the AM at 1:30 and 4:30. Every night. She would get up, open the door, take a few steps, look around, and then come back. Usually at 1:30 she would get something to eat. This also helps explain why I was up late doing research. I figured, I am getting up anyway.

I never stopped my mother, or tried to deter her from walking out the door. I did pay attention though, just in case she decided to take off. I can't tell you why I never stopped her, or lectured her. Good instincts I guess.

It took a few years, three I think, before I cured her of that problem. She no longer gets up in the middle of the night. Although, I suspect she might after I write these words. I am supertitious about what I say. Which also explain why in my business career I was very tight lipped.

Alzheimer's and Bonding

Human bonding is the process of developing a close, deep, interpersonal relationship.

By Bob DeMarco
Alzheimer's Reading Room

Alzheimer's and Bonding
Bonding with a person living with dementia. Bonding with a person who is deeply forgetful.

How much thought have you given to interpersonal bonding?

Are you actively trying to bond with your loved one who is living with dementia?

Apr 17, 2012

Our Brains Are What We Eat

Can diet affect your risk of Alzheimer's, or reduce those risks?

Alzheimer's Reading Room

Gene Bowman
Higher blood levels of omega-3 fatty acids, vitamin B, vitamin C, vitamin D and vitamin E are associated with better mental functioning and less brain shrinkage in older people.

This study caught my attention because the average of a participant was 87 years old.

The research behind the study was published in the journal Neurology and showed that people with healthier diets — rich in omega-3 fatty acids and a variety of vitamins — had bigger brains and better cognitive function than those whose diets were unhealthier on the whole.

This study does differ from previous studies around these issues. See the explanation below.

Grace Kearney Writes an Award Winning Essay About Alzheimer's

Through the Looking Glass: Understanding the World of the Alzheimer’s Patient

By Max Wallack
Alzheimer's Reading Room

Each year the Alzheimer’s Foundation of America offers several scholarships for graduating high school seniors. Scholarships are offered for both essay and video entries.

This year's winning entry was written by Grace Kearney from Baltimore, Maryland.

Please take the time to read this remarkable essay.

Congratulations Grace!

Apr 16, 2012

Flutemetamol for Alzheimer's, Results of Phase 3 Studies

The ability to detect or exclude significant amyloid deposits in the brain, along with other diagnostic tests, may help physicians make a more accurate assessment of patients with suspected Alzheimer’s disease and other cognitive disorders.

Alzheimer's Reading Room

GE Healthcare (GE) today announced the preliminary results of two Phase 3 studies of its investigational PET amyloid imaging agent, [18F]flutemetamol, where both studies met their primary endpoints.

One study, in terminally ill patients who agreed to undergo brain autopsy, showed strong concordance between flutemetamol PET images and Alzheimer’s disease-associated beta amyloid brain pathology.

The other study, in young healthy volunteers under age 40, had results concordant with the known lack of brain amyloid in this population.

Full results of these studies will be presented in the coming months. [18F]Flutemetamol is a GE Healthcare PET imaging agent in development for the detection of beta amyloid.

Memory Moments Music Therapy - Lakeview Ranch

Music Therapy is becoming a powerful tool in the treatment of Alzheimer's and Dementia.

By Bob DeMarco
Alzheimer's Reading Room

If you watch around the watch around the 2 minute mark (2:15), you might get an interesting idea for a game you can play. Don't have much to say, or know what to talk about? Try singing.

Apr 15, 2012

BU Researchers Identify Genes that Influence Hippocampal Volume

The hippocampus shrinks before and during the progression of Alzheimer's disease, but other factors, such as vascular risk factors and normal aging, also lead to the decrease in size.

Alzheimer's Reading Room

Sudha Seshadri
An international team of researchers led by the Boston University School of Medicine (BUSM) has identified four loci that appear to be associated with decreasing the volume of the hippocampus.

The hippocampus is the region of the brain that plays an important role in the formation of specific, new memories, which is an ability that patients with Alzheimer's disease lose.

The findings may have broad implications in determining how age, Alzheimer's disease and other diseases impact the function and integrity of the hippocampus.

Sudha Seshadri, MD, professor of neurology at BUSM, is a senior author of the study, which will be published online in Nature Genetics.

Hope and the "Seeing Alzheimer’s Differently Symposium"

Hope is a positive emotional state that is the opposite of despair. Hope removes the blinders of fear and despair. Hope opens up our minds and allows us to think positive under dire circumstances. Hope provides us with the psychological and emotion energy to accomplish what those without hope often consider the impossible.

By Bob DeMarco
Alzheimer's Reading Room

On April 25, I 'll be heading up to the Michael Schimmel Center for the Arts at Pace University to speak.

I'll be holding a workshop at 3:30 PM with the general topic, “Communicating in Alzheimer’s World: The Path from Burden to Joy”.

I'll reveal for the first time some of the things that Dotty taught me.

If you are in the neighborhood, come on by and participate along with me. It would be nice to have someone with me that made the big giant step to the left and walked right into Alzheimer's World.

At 7 PM, I'll be one of several speakers at the Seeing Alzheimer’s Differently Symposium. Don't be late, I am up first at 7 PM. I'll talk about how I rewired my brain. And, if I can get some tech help, I'll show Dotty and Harvey singing. Go here for the details.

Now to the purpose of this article.

Alzheimer's is Hard to Understand

Understanding Alzheimer's is about building trust and understanding with the person who is "deeply forgetful."

By Bob DeMarco
Alzheimer's Reading Room

When most people think about Alzheimer's or dementia they think about a person that can't remember.

This can be confusing because for a long time most persons living with dementia can talk confidently about the past, and their favorite places. This often causes a disconnect. It can also cause a diagnosis to be missed because many person living with dementia can function quite well.

There I said it. Can function quite well.

This morning I suggested to Dotty that she do some coloring. She said to me, I don't know how to do it. I answered, no problem, I'll help you get started. I'll lend you my brain. Dotty smiled and laughed. She also leaned over and put her head on my chest. Sweet.

Apr 14, 2012

How Alzheimer’s is Diagnosed?

Normally referred to as "very severe cognitive decline" or "late-stage Alzheimer’s," this is when the patient is completely unable to care for himself or herself.

By Kevin Clarke

These days, many people suffer from the debilitating effects of Alzheimer’s disease.

Alzheimer’s is a neurologically degenerative condition, which leads to loss of memory, as well as other intellectual facilities.

While there is no known cure for those who have been diagnosed with Alzheimer’s, there are ways to help patients deal with some of the symptoms.

How Healthy Is Your County? Find Out

2012 Health Rankings show what influences how healthy residents are, how long they live.

Alzheimer's Reading Room

More than 3,000 counties and the District of Columbia can compare how healthy their residents are and how long they live with the 2012 County Health Rankings.

The Rankings are an annual check-up that highlights the healthiest and least healthy counties in every state, based on key factors that influence health such as education rates, income levels, and access to healthy foods and medical care.
“The County Health Rankings show us that much of what influences our health happens outside of the doctor’s office. In fact, where we live, learn, work and play has a big role in determining how healthy we are and how long we live,” said Risa Lavizzo-Mourey, president and CEO of the Robert Wood Johnson Foundation.
The report draws on data from the CDC, the Dartmouth Health Atlas, the U.S. Census Bureau and other sources.

Alzheimer's and Dementia News 131

Alzheimer's patients make memorable art and more.

Alzheimer's Reading Room

Alzheimer's patients make memorable art
Beth Reilly had never known her husband, Ken, as an artist, a painter. Alzheimer's disease has introduced that side of him to her, even as she loses the rest of the man she's known and loved all these years.
Read More

Alzheimer's Drug Candidate May Help Brain Injuries Heal
Increasing evidence suggests that Notch is also involved in neurodegenerative conditions such as Alzheimer’s disease and stroke.
Read More

Nursing home aide accused of abusing dementia patient
Worker, who has been fired, held pillow over woman’s face, deputies say
A 53-year old St. Johns County nursing home worker has been charged with abusing a patient after being caught holding a pillow over her face this morning, the Sheriff’s Office said.
Read More

Apr 13, 2012

Alive Inside Video Goes Viral, Alzheimer's and Music

Music brings out the "More There" in Alzheimer's Patients. New video alerts the public to this phenomena.

By Bob DeMarco
+Alzheimer's Reading Room

On Tuesday, Carole Larkin wrote an article, Music and Memory, An Old Man's Reaction to Hearing "His" Music, that included a video of a man living with dementia who "came alive" as he was listening to music via an Ipod.

Since then the video has gone "viral" on the internet. The video has been watched more than 500,000 times.

I have to admit, I am a bit envious. Too bad the video of Dotty singing, Shine on Harvest Moon, or Alzheimer's Patient Sings With Parrot and Discusses Breakfast didn't blast off on the Internet.

The Power of Music in Alzheimer’s Disease

Music Alzheimer's dementia

"As a family, we didn't know what to do when our father was diagnosed with this Alzheimer's disease. We have been through so many stages and now he seems to just be deteriorating to nothing. However, the music seems to have brought back some of his brain to him!"

When I tell people I study the role of music in the lives of patients with Alzheimer’s disease I am often swept up into fascinating and poignant conversations about just how special music is for those affected by this devastating illness.

It seems that nearly everyone who has a loved one affected by Alzheimer’s has some story to tell about the transformative power of music.

Neuroscience Music Alzheimer's

Apr 12, 2012

Alex Karras Has Dementia Sues NFL

Alex Karras is a former All-Pro football player and actor. He is a household name in the U.S.

By Bob DeMarco
Alzheimer's Reading Room

Alex Karras Has Dementia Sues NFL
Alex Karras
Karris was officially diagnosed with dementia seven years ago, and is taking the role of lead plaintiff in a suit against the National Football League. Karras and Susan Clark, his wife, are two of 119 people who filed suit today in U.S. District Court in Philadelphia, the latest complaint brought against the NFL by ex-players who say the league didn’t do enough to protect them from head injuries.

As far as I can tell, more than 1,000 former NFL players are now suing the league.

A growing number of well known sports figures, actors, and musicians have disclosed that they are suffering from dementia, or have died from dementia in the last few years.

The list includes Glen Campbell, Pat Summitt, Peter Falk, Darrell Royal, and now Karras.

Won't Come Out of the Bathroom, Won't Use the Bathroom

When I couldn't get Dotty to go to the bathroom I thought about tying a potato chip on a string and dangling it in front of her face to entice her to follow me to the bathroom.

By Bob DeMarco
Alzheimer's Reading Room

I didn't do that, but the thought did cross my mind. In order to encourage a person with dementia to do what you would like to them to do you have to find the "hook".

In our case, I didn't tie a potato chip on a string. Instead, I said come on lets take a pee, and then we will get some potato chips.

Key word, Lets. As in let us. Key word, we.

Not you need. Or, I want you too.

Instead, we will and then the "hook". So we weren't really going to the bathroom, we were going to get something to eat -- the beloved potato chip in this case.

I think what you say has to be positive, not negative.

I think it needs to lead to an action that is wanted, desired, or fun. Baby dolls, or repeat parrots can help. For example, I might get Harvey to repeat, Dotty come out here; or, Dotty drink your juice (as in prune juice, I jettisoned the word prune). It works.

We have two readers seeking advice and insight under the article -- Alzheimer's Care and the 90 Minute Pee Pee.

You Can't See the Forrest for the Trees

You and I travel to the beat of a different drum
Oh can't you tell by the way I run
Every time you make eyes at me

You cry and moan and say it will work out
But honey child I've got my doubts
You can't see the forest for the trees

By Bob DeMarco
Alzheimer's Reading Room

Banyan Tree
Every time we drive through Sherwood Forrest Dotty marvels at the size and shape of the Banyan trees. The Banyan trees are about 60 feet tall. Maybe taller.

I would estimate that Dotty has seen the same exact trees over 7,000 times. But now, each time its for the first time.

Apr 11, 2012

An Alzheimer's Village on Earth

Someone once asked in the comments section, what is going to happen to you if you get Alzheimer's disease? I'm moving to Hogewey.

By Bob DeMarco
Alzheimer's Reading Room

I like to think. I like to imagine. Many times I have imagined a kinder, gentler place for the deeply forgetful.

Well truth be known, I first imagined a kinder, gentler place for Dotty and me. I already made that happen in our own little Alzheimer's World.

Kind, gentle, creating an environment based on trust. Along the path from burden to joy.

Dr. Murali Doraiswamy, author of the Alzheimer's Action Plan and chief of biological psychiatry at Duke University Medical Center in Durham, N.C., said the idea could be "a game changer" in Alzheimer's care.

Dementia Must Be A Global Health Priority - World Health Organization

A report released today by the World Health Organization (WHO) and Alzheimer’s Disease International (ADI) calls upon governments, policymakers and other stakeholders to make dementia a global public health priority.

Alzheimer's Reading Room

Dementia: A Public Health Priority
This new report provides the most authoritative overview of the impact of dementia worldwide.

To prepare the report, the World Health Organization and ADI commissioned reports from four working groups of experts and sought additional inputs from nearly two dozen international contributors and more than 20 expert reviewers.

In addition to valuable best practices and practical case studies from around the world, it contains the most comprehensive collection of data, including hard-to-get statistics, thereby dramatically underscoring that this is truly a global problem and not just a “disease of the industrial world.”

Apr 10, 2012

Help I'm Having Trouble Changing My Wife's Soiled Clothing

A member of the Alzheimer's Reading Room community needs our help. What insight or advice can you offer?

Alzheimer's Reading Room

This request for help actually came in as a comment/question under the article, Music and Memory, An Old Man's Reaction to Hearing "His" Music.
Reader Whaler writes and asks:

Help! I am having trouble changing my wife's soiled clothing.

She wont do it herself, and when I do it she yells and hits me.

I must get it done or she will stay soiled for hours on end.

I have hired home care people to do it but she does the same thing.

Use the Add New Comment box below to offer you advice, insight and helpful suggestions.

Music and Memory, An Old Man's Reaction to Hearing "His" Music

My friend Laura sent me this yesterday. I was very moved when I watched it. I believe that you will be moved too. It speaks so eloquently to the power of music.

By Carole Larkin
Alzheimer's Reading Room

This is an excerpt from Alive Inside, a documentary about Music and Memory.


Apr 9, 2012

Alzheimer's Heaven on Earth

I want to encourage each of you to take the time to watch this video and read the accompanying story.

Judy Berry
They put her in what they call the locked unit. At that point in time it was six beds in a small hallway with locked doors. 
She went berserk. 
She was so medicated that when I would come see her she wouldn't act like she knew who I was. 
I was somebody familiar so she'd look up at me and she'd have tears in her eyes and she'd say help me.

This will take some time to watch and read, so if you can't do it now bookmark the link and do it when you have the time. I feel comfortable saying you won't be disappointed, you don't want to miss this.

Cure Alzheimer's Fund Meeting, and Leaving Dotty in the Hands of Others

I'm off to meet the principals of the Cure Alzheimer's Fund and Rudy Tanzi, and another exciting adventure for Dotty and me.

By Bob DeMarco
Alzheimer's Reading Room

Later today I am off to Naples, Florida to meet with the "people" from the Cure Alzheimer's Fund (CAF). For me this is exciting "stuff".

I'll be meeting with the Founders of the CAF including Henry McCance. I will also be meeting with Tim Armour, the President, and Rudy Tanzi, among a long list of people.

Of course, this also means I will be leaving Dotty with our good friends Jim and Ruth overnight.

Apr 8, 2012

Alzheimer's and Dementia News 129

By Bob DeMarco
Alzheimer's Reading Room

Harvard Medical School Adviser: Alzheimer's disease answers
QUESTION: Both my mother and my father-in-law suffer from Alzheimer's disease. We're told that they both seem to be at about the same point in the physical progression of the disease. But my father-in-law has remained fairly lucid, while my mother is more confused and forgetful. What could account for this?
Read More

Kevin Riordan: An artistic project offers the chance to make connections, raise Alzheimer's awareness
William B. McNamee told his grandson a secret about memory, even as he was losing his own memory to Alzheimer's.

One day, we'll be strangers . . . but you can remember the way we held hands when the wind moves through your fingers.
Read More

Scientific Evidence For and Against Dietary Supplements

Ever wonder which dietary supplements work best? Ever wonder if the claims of the sellers of dietary supplements are backed by scientific research on humans?

+Alzheimer's Reading Room

Ever wonder which dietary supplements work best

The first issue -- which dietary supplements are effective and backed by research on humans. The second issue -- what is the effectiveness of a dietary supplement for any given condition.

Happy Easter from Dotty and Bob 2012

Happy Easter to the entire Alzheimer's Community Worldwide

Dotty and the south Florida Easter Bunny
Happy Easter
From Dotty and Bob

Reading, Engaging and Communicating with an Alzheimer's Patient

I suspect that if you stop engaging a person with Alzheimer's, talking to them all day long, they might stop talking sooner rather then later.

Dotty and the Georgia Bulldog AlzheimersReadingRoom.com

Take the extra step. Walk the extra yard. Engage. Keep on living. Don’t be afraid to try things. Do things that you have always done together. Don’t let anyone discourage you or get in your way...

Make your own parade and have fun.

Topic - How to listen to an Alzheimer's patient

Apr 6, 2012

Conversations as a Means to Delay the Onset of Alzheimer's Disease

Everyone needs conversation and social engagement. This includes persons who are deeply forgetful.

By Bob DeMarco
Alzheimer's Reading Room

Conversations as a Means to Delay the Onset of Alzheimer's
Can conversation, social interaction, and using the brain slow the progression of Alzheimer's?

I believe it can and does.

Over the years, I have spent more and more time talking and interacting with Dotty.

For example, we start every day, right off the bat talking about the newspaper. Dotty reads me the day and date. Then I ask her what is interesting on the front page, and then get her to read some of it to me.

If that doesn't work we move to the food section and discuss the recipes. Most of the time the list of ingredients are quite long.

I still marvel at the fact that at the age of 95 years old Dotty can still read the newspaper without glasses. Believe it or not, she also watches television without eye glasses.

Catching the Early Signs of Dementia

Looking back, there is little doubt in my mind that if I had the proper education or information, I would have realized my mother was suffering from dementia sooner.

By Bob DeMarco
Alzheimer's Reading Room

Bob DeMarco | Alzheimer's Reading Room
Most people tend to miss the early signs of Alzheimer's prefering to believe they are simply signs of "old age".

Anyone who ends up in my shoes knows and understands that a person in the early stages of dementia or Alzheimer’s can function in a way that on the surface appears normal -- even drive a car.

It is not until a person starts to deteriorate or until some "event" takes place the reality of the situation takes hold.

Here is a really interesting article (below) that I read way back in 2007.

The underlying premise is that behavior changes slowly in the elderly, and if they begin to suffer cognitive impairment it will be evidenced in behavioral changes. Sometimes these changes can be quite subtle, but if detected could raise a “red flag”.

If my mother had been enrolled in any of these studies, I feel certain she would have been diagnosed sooner. This would have allowed us to get her in an exercise program, get her proper nutrition, and insure that she was taking her medications as prescribed.

Apr 5, 2012

Just Let the Deeply Forgetful Do It

Almost every day I am reminded of one of the most important things I learned about Alzheimer's caregiving -- Just let Dotty do it.

By Bob DeMarco
+Alzheimer's Reading Room

Just Let the Deeply Forgetful Do It

I believe this is important.

Just let them do it. I am referring here to a person who is deeply forgetful.

Lets reverse this -- Don't do everything for them. You might ask why?

First, don't do everything for them. If you do everything for a person who is deeply forgetful they will forget how to do it. Once they forget it is unlikely that they will be able to relearn how to do it.

Second, just let them do it. I learned first hand that a person who is deeply forgetful is capable of more, much more, than you might be imaging. There is more there than you can imagine. I relearn this constantly, and I have been at it for more than 8 years with Dotty.

Apr 4, 2012


Alzheimer's Reading Room

I'll be speaking for the first time in public on April 25th in New York, at the Pace University Michael Schimmel Center for the Arts. Previously, I limited my speaking to television and radio for reasons that most of you already understand.

I'll be hosting a Workshop at 3 PM. The broad title of the workshop is "Communicating in Alzheimer's World: The Path from Burden to Joy."

At 7 PM, I'll be speaking along with Richard Taylor at the first symposium session titled, "Caring for Yourself, Caring for a Love One: Adopting a Positive Mindset".

Both session are free, open to the public, and readers of the Alzheimer's Reading Room are welcome to attend.

At the same time, and in the same location, there will be an exhibit of the photographs that Cathy Greenblatt compiled for her new book, "Love, Loss and Laughter: Seeing Alzheimer's Differently". The photos in the book are really impressive, and I can't wait to see the much larger versions in the exhibit (for the first time). I am especially fond of pages 44-45 in the book.

You can see some sample photos here, and you can buy the book on Amazon.

See the details below.

Do Cholesterol Drugs Benefit Alzheimer's Patients or Delay the On Set of Alzheimer's?

"This study shows that simvastatin can protect against some of the damaging effects of Alzheimer's disease on nerve cells involved in memory, if administered early in the disease process."

By Bob DeMarco
Alzheimer's Reading Room

Do Cholesterol Drugs Benefit Alzheimer's Patients or Delay the On Set of Alzheimer's?
I started reading about statins, cholesterol drugs, and Alzheimer's back in 2004. This gave me the idea to go back and look at Dotty's prescription medication records. I learned that Dotty had not been very good at taking her medications for cholesterol and hypertension during the two years before I arrived on the scene to take care of her.

I wonder how many people check to see if their elderly parents are taking their medications properly. All you need is the prints out from their healthcare provider to examine their purchase record. In Dotty' case I noticed she was not purchasing here medications on a timely basis. In other words, she was not buying enough pills to indicate she was taking her medications as prescribed. She forgot to take them and she wouldn't use the pill boxes I bought for her.

At the time I wondered, why don't the healthcare providers have a simple software program available to send an email alert when new drugs are purchased. This help would children of parents keep track in an easy, not threatening way.

Apr 3, 2012

More Insight and Advice from the Alzheimer's Reading Room 2

More Insight and Advice from the Alzheimer's Reading Room

Why Did Charles Snelling Kill His Wife and Himself?

From every account I read Charles Snelling was a good and successful man. He was a good husband and father.

Alzheimer's Reading Room

Since we published Man Kills Wife Suffering with Alzheimer's and then Kills Himself , and Right to Die?, I have been wondering why Charles Snelling decided to kills his wife who was living with dementia, and then kill himself? Why?

After 61 years of marriage to his wife, Adrienne Snelling, and six years of caring for her he decided to end it all, abruptly.

My first immediate thought, was he suffering from depression? Did he become depressed? Almost 40 percent of Alzheimer's caregivers suffer from depression.

I wondered, did Charles Snelling make a pact with his wife? Were his actions premeditated well in advance?

What was Charles Snelling thinking, feeling?

Alzheimer's and Dementia News 127

Good dog comes through, dancers raise $85,000 for Alzheimer's disease.

Alzheimer's Reading Room

The Good Dog
Officer Bryan McMahon and his canine partner, Kai, find a missing woman suffering from Alzheimer's hiding under a tarp
Read More

Dancers raise $85,000 for Alzheimer’s Association
The 13th annual Forget-Me-Not Gala raised about $85,000 for the Alzheimer’s Association. That is some serious dancing.
Read More

Apr 2, 2012


Of course, Alzheimer's World being what it is, it's not always the right thing to say.

By Claudia Marshall-Apers

When my mom started exhibiting some of the bizarre behaviors of moderate to severe Alzheimer's, I felt a little like Alice who had fallen down the rabbit hole.

Things were getting “curiouser and curiouser”.

Then I found the Alzheimer's Reading Room and discovered that there was another world called Alzheimer's World but I didn't fully understand how to communicate there.