March 2009

Mark Smith Answers, Do You Really Want an Alzheimer's Test

In the last ten days, I wrote several articles on Alzheimer's Testing. This issue became particularly interesting when Terry Moran reported the results of his Alzheimer's test in his report on Nightline.

+Alzheimer's Reading Room

A few days before that show aired, I read this quote by Mark Smith in Forbes,
"What do you do with these people once you diagnose them -- apart from frighten them?" asks Mark Smith
I decided to email Mark to get a better understanding of his position on Alzheimer's testing. He was kind enough to reply (below). Thank you for taking the time to respond, Mark.

Mark Smith has devoted 20 years of his life to Alzheimer's. He is Editor-in-Chief, Journal of Alzheimer’s Disease, and an Executive Director of the American Aging Association.

Unlocking the Alzheimer's mystery

This is a really interesting article.
The 75-year-old Eltingville woman smiles at the screen. Her visual memory is being tested as part of a year-long clinical study of a new drug -- T-817MA -- being investigated for the potential treatment of Alzheimer's. The degenerative disease attacks the brain, causing impaired memory, thinking and behavior.

Unlocking the Alzheimer's mystery

This Phase II clinical trial is currently recruiting participants--Efficacy and Safety of T-817MA in Patients With Mild to Moderate Alzheimer's Disease.

Subscribe to the Alzheimer's Reading Room
Enter Your Email Address

More Insight and Advice for Caregivers

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 2,680 articles with more than 512,100 links on the Internet. Bob lives in Delray Beach, FL.

The Alzheimer’s Action Plan: The Experts’ Guide to the Best Diag­no­sis and Treat­ment for Mem­ory Prob­lems
The 36-Hour Day A Family Guide to Caring for People with Alzheimer Disease

Original content Bob DeMarco, the Alzheimer's Reading Room

Frontline Presents Sick Around America

Frontline airs on PBS. Sick Around America airs on television and the Internet beginning on March 31. Follow the link to find the schedule for your area.

Subscribe to the Alzheimer's Reading Room

Enter Your Email Address

How do you get Dimebon?

By Bob DeMarco

One of our readers in Florida, Dawn, emailed me and asked if I knew how Dimebon could be purchased or obtained? I looked into this and I couldn't find a way to buy it legally in the United States.

There are ongoing Phase III clinical trial of Dimebon that are currently recruiting patients.

To read our updated article on Dimebon Clinical Trials go here.

Also see: Is Pfizer Medivation's Dimebon a $1.5 Billion Blockbuster Drug ?

Related Content
Bob DeMarco
Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized Influencer, speaker, and expert in the Alzheimer's and Dementia Community Worldwide. The Alzheimer's Reading Knowledge Base contains more than 4,000 articles, and the ARR has more than 343,000 links on the Internet. Bob lives in Delray Beach, FL.
The Alzheimer's Reading Room Knowledge Base

Health Reform Dialogue

A collection of health care groups, that reads like a Who's Who in the Industry, issued a set of recommendations today on the restructuring of the health care system and benefits programs. 

The report is mostly in agreement with what Democrats are currently proposing.

To obtain a copy of the Health Reform Dialogue report go here.

To read a good discussion of the report go here--What Docs, Insurers, Pharma and Businesses Agree On.

Shriver, Gingrich, and O'Connor Raise Alzheimer's Awareness

Very impressive testimony.
"We have to put Alzheimer's on the front burner, because if we don't, Alzheimer's will not only devour our memories, it will cripple our families, devastate our health care system and decimate the legacy of our generation," Shriver told the Senate's Special Committee on Aging.
"The human pain and financial burden of Alzheimer's is so great and the potential breakthroughs in science are so encouraging that a 'Manhattan Project' ... approach to ending Alzheimer's is more than justified," Gingrich said, referring to the government project to develop a nuclear weapon during World War II. He noted that polio infected more than 50,000 Americans in the 1950s, but the disease largely was eradicated when a vaccine was found.
"We just can't face that kind of personal tragedy and the cost," said retired Supreme Court Justice Sandra Day O'Connor, a member of the study group who has personal experience with Alzheimer's: Her husband, John, has the disease.

"The disease is devastating not only for those who are afflicted, but also their friends, family and colleagues," O'Connor said.

Shriver, Gingrich push for Alzheimer's ‘Manhattan Project'

Subscribe to The Alzheimer's Reading Room--via Email

Terry Moran's Alzheimer's Test Results

By Bob DeMarco
Alzheimer's Reading Room

I have been checking ABC News to see if they were going to do a follow up from last night's Nightline report on Alzheimer's. The report--Facing Alzheimer's: A Personal Story included the results of Terry Moran's genetics test to determine his genetic predisposition to Alzheimer's disease. Since they don't seem to be following this up, and since people are asking about the results all over the Internet, I thought I would post some information.

Comments on Facing Alzheimer's A Personal Story

ABC Nightline did a short segment on Alzheimer's. The shows primary focus was on Meryl Comer and Terry Moran.

+Alzheimer's Reading Room

Alzheimer's Reading Room

I thought the show was very powerful and focused.

It really delivered two messages: how completely devastating Alzheimer's can be; and, the uncertain fate of the offspring of Alzheimer's sufferers.

The show tackled a very important issue -- Would you take the test to determine if you are genetically predisposed to Alzheimer's.

Scientists create 'artificial brain' to help fight Alzheimer's

Scientists have created an "artificial brain" they believe could help them discover a cure for diseases like Alzheimer's.

Researchers at Aston University in Birmingham took cells from a cancerous tumour and "reprogrammed" them to create those identical to the human nervous system.

Scientists say that the development could mean that a breakthough in conditions such as dementia and Parkinson's Disease has been brought closer.

Shriver on Alzheimer's: Dad remembers Hail Mary, but not me

Knowing that the day is coming when they --won't know you-- is the most horrific feeling of them all - +Bob DeMarco 
For me, Maria Shriver's testimony was very moving.


Related Content

Original content Alzheimer's Reading Room

Nuns Alzheimer's Disease Study Resumes

A famous brain study that left the University of Minnesota nearly 20 years ago has returned. The Nun Study gained worldwide attention for its insights into Alzheimer's disease.

+Alzheimer's Reading Room

More than 600 sisters, many of them from the School Sisters of Notre Dame in Mankato, donated their brains to research upon their deaths.

Information gathered from the research has shown that a healthy lifestyle and positive childhood experiences can protect a person from developing debilitating memory loss.

Nightline, Alzheimer's Disease and Terry Moran

I just finished watching the Terry Moran segment about Alzheimer's on Nightline (ABC). It was very powerful for a short segment. For Alzheimer's caregivers it was gut wrenching.
By Bob DeMarco

The shots of Meryl Comer caring for her husband and mother were very moving. Her dedication to her husband and her mother could not be described by me--not in words. She did make a very simple, straightforward statement about caregiving--you do it. She has dedicated 15 years of her life caring for her husband.

Facing Alzheimer's: A Personal Story

Tonight on ABC News "Nightline": Facing Alzheimer's: A Personal Story

Airing tonight on ABC News "Nightline", Terry Moran takes a powerful and intimate look at facing the risks of Alzheimer's. “Nightline" airs at 11:35 p.m. (ET/PT) weeknights on the ABC Television Network (check local listings). The program is anchored by Cynthia McFadden, Terry Moran, and Martin Bashir. John Donvan and Vicki Mabrey are correspondents. James Goldston is the executive producer.

Also see:

Nightline: Why I Got My DNA Tested for Alzheimer's Disease

Nightline: Why I Got My DNA Tested for Alzheimer's Disease

Tonight on Nightline (ABC), Terry Moran will share his story and reveal why he decided to get tested for Alzheimer's. Just a few days ago, I posted this story--Alzheimer's Would you take the test? Tonight we will get one man's answers.

I can only hope that Mark Smith is watching--maybe it will open his eyes. This is what Mark Smith had to add to the discussion,
"What do you do with these people once you diagnose them -- apart from frighten them?" asks Mark Smith, a professor at Case Western Reserve University who has been an influential thinker when it comes to the disease.

2009 Alzheimer's Disease Facts and Figures

The 2009 edition of Alzheimer's Disease Facts and Figures is now available from the Alzheimer's Association.

Some facts:
  • Every 70 seconds someone is diagnosed with Alzheimer's
  • 5. 3 million people are currently suffering from Alzheimer's
  • Alzheimer's is now the sixth leading cause of death (surpassing diabetes)
  • there are now 9.9 million unpaid caregivers in America (just like me)
  • One in eight people aged 65 or older suffers from Alzheimer's disease
To get a copy of the 2009 Alzheimer's Diseases Facts and Figures click here.
Subscribe to The Alzheimer's Reading Room--via Email

Popular articles on the Alzheimer's Reading Room

The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. The Alzheimer's Reading Room is the number one website on the Internet for news, advice, and insight into Alzheimer's disease. Bob has written more than 950 articles with more than 8,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, Alzheimer's Reading Room

Alzheimer's Ready to Attack Baby Boomer Generation (Chart)

Alzheimer's disease is the sixth leading cause of death in the United States (now surpassing diabetes).
In people over age 65, Alzheimer's is the fifth leading cause of death. If a treatment or cure is not fund, Alzheimer's is likely to devastate the baby boomer generation.

Cognitive decline begins in late 20s

A new study indicates that some aspects of peoples' cognitive skills – such as the ability to make rapid comparisons, remember unrelated information and detect relationships – peak at about the age of 22, and then begin a slow decline starting around age 27.

By Bob DeMarco
Alzheimer's Reading Room

This news about a new research report in the journal Neurobiology of Aging caught my attention.

My gut reaction is this just reinforces that you need to exercise your brain, just like you need to exercise your body to stay in shape. Let's face it, we all get older by the day.

I think the information is useful because it brings into focus that the brain is an important part of the body that should not be ignored.

Those of us that live Alzheimer's from the Front Row really understand this. But I wonder, does the average 40, 50, or 60 year old. I don't think so. I know I did not give much thought to taking good care of my brain before my mother was diagnosed with Alzheimer's.

File this one under food for thought.

Mentally Ill a Threat in Nursing Homes

Ivory Jackson had Alzheimer's, but that wasn't what killed him. At 77, he was smashed in the face with a clock radio as he lay in his nursing home bed.
This gave me a bit of a stomach ache. Fortunately, my mother is still at home with me.

After reading the story, I decided that this news while shocking needs to be distributed.
Over the past several years, nursing homes have become dumping grounds for young and middle-age people with mental illness, according to Associated Press interviews and an analysis of data from all 50 states. And that has proved a prescription for violence, as Jackson's case and others across the country illustrate.

Younger, stronger residents with schizophrenia, depression or bipolar disorder are living beside frail senior citizens, and sometimes taking their rage out on them.

"Sadly, we're seeing the tragic results of the failure of federal and state governments to provide appropriate treatment and housing for those with mental illnesses and to provide a safe environment for the frail elderly," said Janet Wells, director of public policy for the National Citizens' Coalition for Nursing Home Reform.

Numbers obtained through the Freedom of Information Act and prepared exclusively for the AP by the Centers for Medicare and Medicaid Services show nearly 125,000 young and middle-aged adults with serious mental illness lived in U.S. nursing homes last year.

That was a 41 percent increase from 2002, when nursing homes housed nearly 89,000 mentally ill people ages 22 to 64. Most states saw increases, with Utah, Nevada, Missouri, Alabama and Texas showing the steepest climbs.
Read the entire article.
Subscribe to The Alzheimer's Reading Room--via Email

Alzheimer's Would you take the test?

I read this Forbes article--Do You Really Want That Alzheimer's Test? The article discusses a new test for Alzheimer's that is 87 percent accurate in diagnosing the disease early.

Near the top of the article I read this quote:
"What do you do with these people once you diagnose them -- apart from frighten them?" asks Mark Smith, a professor at Case Western Reserve University who has been an influential thinker when it comes to the disease.
I decided to answer this question from my own personal experience.

Dear Mark,

When my mother first started to exhibit some strange behaviors I became concerned. So concerned that I quit my job and moved in with her. It took a year to get her properly diagnosed. She was suffering from Alzheimer's dementia. During that first year, I rejected depression medication and anti-psychotics. During that first year I was frightened, but not nearly as frightened as my mother. It took one year to get my mother diagnosed Mark. So, this is my first point--yes we would have taken the test if it was available.

It would take me a million words, and I am serious, to describe that first year. My mother said things to me that made my blood boil--words that I had never heard come out of her mouth. A wonderful woman that everyone loved and admired-- turned meaner than a rattlesnake. Some of the things she said to me were so horrific I would never put them in print. It wasn't only the words. My mother was fainting, falling down (she broke her finger on one fall), and doing all kinds of crazy things--like starting to clean her home every night at around 9:36 PM-- give or take a few minutes. Mark, my mother never smiled or laughed once during that first year. I could go on and on.

Even before she was diagnosed with Alzheimer's it was apparent my mother was suffering from some form of dementia. You might find this amazing, but none of her first three personal care physicians diagnosed dementia. At the time, if you met my mother on a park bench you wouldn't get a clue. If you lived with her--different story. Dementia is a sneaky disease. It sneaks up on you. If you take the test--maybe not.

Since I had no prior experience with Alzheimer's or dementia I was never really certain what was going on with her. It was a long hard search. It took all of that first year. We finally found a competent personal physician that was well schooled and informed about the symptoms of dementia and knew what steps to take. If the test had been available we would have averted a long year of stress, angst, trial and tribulation.

During that first year, I started to read about Alzheimer's, dementia and caregiving. It took me months before I realized--I am a caregiver. I continued reading over the years, I read thousands of articles on the Internet about Alzheimer's, and every book I could get my hands on. This is what I believe you do when you find out its Alzheimer's, Mark. You get educated, you get out in front of the problem, and you make this decision--fight.

That first year went by like a New York minute.

Once I started to understand what needed to be done we went to work. We changed our lifestyle.
  • The first thing I did was get my mother on Aricept.
  • The second thing I did was enroll my mother in a gym for the first time in her life--at age 87.
  • I put both of us on an excellent diet--more or less the Mediterranean diet (although my mother still eats potato chips and other junk food--I had no intention of putting her in prison--any kind of prison).
  • We started taking vitamins, anti-oxidants, vitamin e, folic acid, omega fish oil, flaxseed oil, and a long list of supplements. Oddly, all but ginko balboa.
  • We worked hard with our doctor to get her cholesterol, blood pressure, and triglycerides under control.
  • One by one I introduced all these helpful things into my mother's life: bright light, socialization, good communication, and a very secure environment.
Of the above, I continue to believe that exercise was the best and most important decision. I believe that Aricept slowed the development of the Alzheimer's. I learned that if I kept my mother in bright light and around people she had a better day. Put it all together and it started working.

I clearly remember the first time my mother laughed--after two years. Now she laughs and smiles all the time. Funny, how something you take for granted can become such a wonderful experience.

As for me, I can't remember how I was feeling near the beginning. But, I think during that first year I was overwhelmed, frightened, scared, angry--but never in denial. I wanted to know, and I wanted to take action. The test would have benefited us.

My mother is no longer mean. She has not fallen down in over four years. Not a single trip to the emergency room in four years. Don't get me wrong, we still have our wild and crazy moments that come with Alzheimer's. It can be very stressful and disconcerting at times. This is the life we live. But, we are living our life. We are able to live this life because we got a diagnosis. It has been almost 6 years and my mother is still going out to dinner, the gym, and into the bright light. If we sat back and did nothing what do you think she would be doing now?

It is my belief that early diagnosis leads to better outcomes. It has for us and it will for many--but not everyone. So unlike Mark, I think you need to know. You should know. And like me, you will decide what to do about it. But let's put it this way, you can put your head in the sand, or you can control what you can. Everyone gets to make their own decision--I believe.

My mother and I now live a wonderful life. I know it is going to get ugly--I know this because I decided to get out in front of the Alzheimer's curve. I know what is coming. We will deal with it. I'll gather the strength to deal with the ending stage by knowing we fought from day one. I'll know forever that I did everything that was possible; and believe it or not, that is one wonderful feeling.
Smith, though, questions the need for such tests when the industry is still years, if not decades, from any sort of treatment or cure. Diagnostic tests could make people sick with worry if they have to find out years in advance that they are going to come down with this unpreventable disease.

"This breakthrough is very exciting," says Smith. "Yet, these tests will only become popular if they are associated with a treatment strategy."
Mark, I'll take the test. In the meantime, I'll do all the things that can help slow the disease or possibly delay its onset. I am reminded of Magic Johnson, who was diagnosed with HIV--18 years ago. He decided to fight.

It says in the quote your are "an influential thinker when it comes to the disease". I would rather not say what I think about your influence, or did I already? In the meantime, I'll hope and pray for a treatment for the disease--it could come at any time--and maybe not to late for those that decide to fight.

For those of us predisposed to Alzheimer's by birth--I have written extensively about what you can be doing to take better care of your brain. You fight off Alzheimer's for a year or two or three...well don't ask me, think about Magic Johnson.

Mark, you are more than welcome to come in here and respond.
Subscribe to The Alzheimer's Reading Room--via Email

Scientists Report Important Step in Biomarker Testing for Alzheimer's Disease

This comprehensive analysis allowed the scientists to systematically confirm earlier studies on cerebrospinal fluid findings and to develop biomarker profiles that may signal the onset of the disease. Among their findings:

  • Levels of beta-amyloid protein, in particular beta-amyloid 1-42, were lower among ADNI volunteers with MCI compared to those with normal cognition, and lower still among those diagnosed with mild Alzheimer's disease. Decreased levels of this biomarker in the cerebrospinal fluid may indicate that this least soluble form of amyloid is forming sticky plaques between neurons, a hallmark of Alzheimer's.
  • Levels of beta-amyloid 1-42 proved to be the most sensitive biomarker, with an overall test accuracy rate of 87 percent in detecting Alzheimer's pathology in the ADNI volunteers and in people with autopsy-confirmed Alzheimer's.
  • Levels of tau were higher among ADNI volunteers with MCI than among people with normal cognition, and even higher among the volunteers diagnosed with mild Alzheimer's disease. Tau, a protein released by damaged and dying brain cells, can form tangles within cells and may prevent neurons from communicating with each other.
  • In addition to cerebrospinal fluid biomarkers levels, the researchers factored in a known genetic risk factor for Alzheimer's disease — the gene APOE-e4 — into their analysis. The gene occurs in about 40 percent of all people who develop Alzheimer's at age 65 or later, but how it increases risk is not yet known. ADNI volunteers with APOE-e4 genes, high levels of tau and low levels of amyloid were most likely to have mild Alzheimer's.

Bob DeMarco is a citizen journalist, blogger, and Caregiver. In addition to being an experienced writer he taught at the University of Georgia , was an Associate Director and Limited Partner at Bear Stearns, the CEO of IP Group, and a mentor. Bob currently resides in Delray Beach, FL where he cares for his mother, Dorothy, who suffers from Alzheimer's disease. He has written more than 500 articles with more than 11,000 links to his work on the Internet. His content has been syndicated on Reuters, the Wall Street Journal, Fox News, Pluck, Blog Critics, and a growing list of newspaper websites. Bob is actively seeking syndication and writing assignments.

More from the Alzheimer's Reading Room
  • A Simple Three Minute Test Can Detect the Earliest Stage of Alzheimer's Disease
  • Five Ways to Keep Alzheimer's Away
  • Ten Million Baby Boomers likely to suffer from Alzheimer’s during their lifetime
  • Living Alzheimer's From the Front Row
  • High cholesterol levels in your 40s raises Alzheimer's risk
  • Alzheimer's Disease Facts and Figures 2008
  • A Wonderful Moment in Time--Mom at the Banana Boat

  • When it comes to dementia, forget the drugs

    When I started to read this opinion article that I included below, I found it rather disconcerting. After I reread it, I found it informative, full of some good perspective, and disconcerting. If the intention of the author was to "rile" us up--he did a good job. While I can't agree with all of what he says I did learn a few things that left me--disconcerted.
    A survey released in 2002 by the Kaiser Foundation found that the staffs in a typical nursing home spend a total of about two hours and 20 minutes a day with each resident. For the remaining 21 hours and 40 minutes, residents are left to their own -- mostly medicated -- devices.
    +Alzheimer's Reading Room

    Odds of Alzheimer's Two to Three Times as Great in Diabetics

    There are about 18 million Type 2 diabetics who are considered to have at least two to three times a non-diabetic's risk of developing Alzheimer's. Think that is the bad news? Not really.
    Type 2 diabetes often leads to heart disease and other conditions that kill before Alzheimer's typically strikes, in the 70s.
    Meanwhile in the same article Dr. Ralph Nixon of New York University, the vice chairman of the Alzheimer's Association's scientific advisory council says,
    Don't panic if you're diabetic..."It by no means means that you're going to develop Alzheimer's disease, and certainly many people with Alzheimer's don't have diabetes.."
    Hmm. This had me doing some math in my head. Let's say around 12 percent of the 65-70 year old people suffer from Alzheimer's. So if you have diabetes it might be something like 25-36 percent? A bit scary if you ask me.

    Maybe Dr. Nixon isn't worried but the article actually says if you have diabetes, the odds of getting Alzheimer's are very high if you live long enough and are a diabetic. For those of us Living Alzheimer's from the Front Row this has to be disconcerting.

    The incidence of diabetes among our children is rising fast. Maybe you should email this article to a parent.

    Here is the article--feel free to comment or share this with a friend.

    Subscribe to the Alzheimer's Reading Room
    Enter your email address:

    Alzheimer's Virtual Candle Light Vigil set for March 23

    On the evening of March 23, 2009, Alzheimer advocates will gather on the steps of the Lincoln Memorial in Washington, D.C. to share their stories and light candles in honor of their loved ones impacted with Alzheimer's disease. If you can't be there you can light your own candle. Or better yet, get a group together to come outside in your neighborhood and light candles. This can be a very uplifting experience. Why not?
    This moving candlelight vigil is part of the 2009 Alzheimer's Association Public Policy Forum and even if you can't attend this year, we're asking you to light a virtual candle by creating a moving and lasting online tribute.
    If you want to help the Alzheimer's Association you can light a virtual candle and start a fund.

    Subscribe to The Alzheimer's Reading Room--via Email

    Bob DeMarco is a citizen journalist, blogger, and Caregiver. In addition to being an experienced writer he taught at the University of Georgia , was an Associate Director and Limited Partner at Bear Stearns, the CEO of IP Group, and is a mentor. Bob currently resides in Delray Beach, FL where he cares for his mother, Dorothy, who suffers from Alzheimer's disease. He has written more than 500 articles with more than 11,000 links to his work on the Internet. His content has been syndicated on Reuters, the Wall Street Journal, Fox News, Pluck, Blog Critics, and a growing list of newspaper websites. Bob is actively seeking syndication and writing assignments.

    More from the Alzheimer's Reading Room
  • A Simple Three Minute Test Can Detect the Earliest Stage of Alzheimer's Disease
  • Five Ways to Keep Alzheimer's Away
  • Ten Million Baby Boomers likely to suffer from Alzheimer’s during their lifetime
  • Living Alzheimer's From the Front Row
  • High cholesterol levels in your 40s raises Alzheimer's risk
  • Is Alzheimer's a type of diabetes of the brain?
  • Alzheimer's Disease Facts and Figures 2008
  • Is Mild Cognitive Impairment (MCI) an Early Stage of Alzheimer's
  • Is Etanercept the Cure for Alzheimer's
  • A Wonderful Moment in Time--Mom at the Banana Boat

  • Penn Medical Pathologists Pioneer Biomarker Test to Diagnose or Rule Out Alzheimer’s Disease

    A team of scientists at the University of Pennsylvania have validated and standardized a test capable of confirming or ruling out Alzheimer's disease. This news is significant because it would allow for early detection of Alzheimer's and early treatment. There is an entire body of evidence that shows that early detection of Alzheimer's leads to better outcomes in fighting the disease.

    In addition, the test can also predicted whether a person’s mild cognitive impairment would convert to Alzheimer’s disease over time.The test was 87 percent accurate overall. This is remarkable news.

    This news is particularly important for baby boomers. Current studies indicate that as many as ten million boomers are likely to suffer from Alzheimer's disease if a cure or preventive medications are not identified by research.

    Subscribe to the Alzheimer's Reading Room

    Enter your email address:

    A Simple Balance Test May Detect Alzheimer's Early

    The announcement of this article caught my attention. I have written several times about the very distinctive sound my mother's feet started making well before she was diagnosed with Alzheimer's dementia. The sound is difficult to describe, but I first heard it when she started scuffing her shoes on the ground as she walked. The sound was unique and it actually disconcerted me. When I mentioned this to my family and friends they all said the same thing, "she is getting old". I dismissed it for a long time, but looking back I now know it was a sign of mild cognitive impairment--often an early stage of dementia.

    This new research about a simple balance test and the ability of this test to detect mild cognitive impairment is important. I suggest you try this one leg balance test. Then, if you have an elderly parent or grandparent you might have them try it from time to time.

    Caregivers Must Be Flexible With Elderly Dementia Relatives

    Alzheimer's Reading Room
    I caught this post over on A Caregiver's Journal.

    If you are a family caregiver for an aging relative who has dementia, you must be flexible. Always expect the unexpected.

    This morning I thought I was going to get Gladys up, give her a quick shower and then she would be off to the Adult Day Center. That’s what I thought. Among other things, she was soaking wet, the bed was wet and the floor under her bedside commode was wet. So much for a quick shower. I have to get it cleaned up quickly because today is physical therapy and the therapist comes at 3 PM. I have errands to run before we pick Gladys up from day care, so now, instead of a leisurely day of tasks and errands, I’m running at full throttle.

    Some days Gladys follows her routine to perfection. Other days she can’t remember how to put on her socks. I never know how the day will go, or if she will cooperate. It’s not too frustrating because I know things can change at any moment. I just try to allot enough time to deal with the unexpected.

    Side Note: If you have a bedside commode for your loved one and they sometimes wet the floor, you are probably concerned about urine stains and odor. There are two things you might want to try.

    * Lowes and Home Depot carry a plastic floor covering made to stick to carpet that you can put on the floor under the commode. You should find it in the paint department. This works but you have to continuously replace the plastic.
    * Purchase a large chair mat made for carpet. You can purchase these at most office supply stores. I purchased mine at Costco. It doesn’t have to be replaced, cleanup is much easier and it can be mopped

    Remember, flexibility is key.

    I am a fan of A Caregiver's Journal. The author, Valerie Johnson, is living in the front row. Somehow I find her writing and advice comforting. If nothing else, Valerie, reminds us we are not alone out here.

    Hundreds of Georgians to lobby on Alzheimer's issues

    By Bob DeMarco
    Alzheimer's Reading Room
    Monday is Alzheimer’s Day at the state Capitol.

    More than 200 advocates, family members and people living with Alzheimer’s disease from around the state — including 35 from Whitfield and Murray counties — will rally. Advocates will meet with legislators to discuss issues important to the 199,457 Georgia families dealing with Alzheimer’s disease.

    Women collect dolls to benefit Alzheimer's patients

    The daughter felt sad and "shook up" when leaving St. Elizabeth's after a visit. After we gave her the baby doll, I never felt sad again when I left, she said. So it was very liberating for me.

    By Bob DeMarco
    Alzheimer's Reading Room

    Two Catonsville mothers, Wendy Geist and Amy Nelson, have initiated a volunteer project of collecting used dolls to ease the suffering and bring joy to seniors experiencing Alzheimer's disease or other forms of dementia. The women say, " beneficial effects can be amazing."

    Well count me in, my mother loves dolls and handles them all the time. She also loves anything that is soft and cuddly--like the pink Gund bear I bought for her 20 years ago. My mother also perks up whenever she is around children. They seem to fascinate her.

    Wendy and Amy live in Baltimore but you can contact them to donate a clean, gently used baby doll--with the emphasis on baby as opposed to toddler dolls.

    You can reach Wendy at, or 410-719-8615, or Amy Nelson at 410-747-3778. Or better yet, you could contact them to discuss and start a similar initiative in your own neighborhood.

    We are living in difficult times, but this shows there are a lot of wonderful people outthere--add Wendy and Amy to the list.

    Subscribe to the Alzheimer's Reading Room
    Enter Your Email Address

    Americans Fear Alzheimer’s More Than Heart Disease, Diabetes or Stroke

    A study by the MetLife Foundation found that Americans fear getting Alzheimer's disease more than heart disease, stroke, or diabetes. Alzheimer's ranks second in the minds of American's only to cancer.

    The Findings of the Study included the following:
    • Americans fear Alzheimer’s disease.
    • Americans know little about Alzheimer’s.
    • One-third of Americans say they have direct experience with Alzheimer’s disease.
    • Most Americans are concerned that they will be responsible at some point for someone with Alzheimer’s disease.
    • Most Americans recognize the need to create a plan to address the possibility of Alzheimer’s disease, but very few have taken steps to do so.