Wednesday, February 29, 2012

Israeli Alzheimer's awareness campaign confuses theater audience

Alzheimer's Reading Room



What If Someone Figured Out How to Turn the Memory Back ON

“The neurons that are still alive are essentially zombies: they’re not really functioning properly because of the epigenetic blockade.”

By Bob DeMarco
Alzheimer's Reading Room

I am not a doctor, and I am not a scientist. Nevertheless, I often find myself hypothecating on the science I read and publish onto the Alzheimer's Reading Room.

For a long time I have been wondering, what happens when my mother has a new experience? She can't remember it. But, is the information being somehow stored in her brain?

I know from experience that my mother can remember some things. For example, words to songs that were popular in the 1930s. A few years back she could sing large parts of those songs. Now it seems she can only sing the most memorable and popular words of the song.

Here is the point. The words are still in her brain, I think, but she can't bring them out.

Now to my point. What if there was a breakthrough. What if someone figured out how to turn neurons back on. Wouldn't it be a miracle?

I know we all think, or at least most of us do, that no matter what happens, it is too late for our loved one's. Even if a good treatment is discovered, its too late.

So I am reading the research below and I think to myself something I have been thinking for a long time.

What If Someone Figured Out How to Turn the Memory Back ON

Oh well, I am just some guy.

New Phone Line Offers Advice on Memory Loss, Dementia

Memory Connection is answered by an expert care team that connects patients to physicians, social workers, support groups, and all available services.

By Bob DeMarco
Alzheimer's Reading Room

Let me ask you a simple question, when you received the dementia diagnosis, who did you call first for help and information? Did you call an association, your church, the local university, who?

Did you get help, accurate information, or anything that helped you cope with the situation?

Who did you call next, and next? Did anyone provide you with the kinds of information a dementia caregivers needs to understand the situation, or information that helped you cope, cope personally with the situation?

How did I do back in 2004? I hit a series of dead ends and brick walls. I did get offered some pamphlets. Yes, I felt alone.

Tuesday, February 28, 2012

Darrell K Royal Fund for Alzheimer’s Research Introduced on Texas Senate Floor

Legendary Texas Football Coach Darrell Royal and wife Edith positions DKR Fund as a ‘Texas game-changer’ in Alzheimer's disease care and research. Celebrities and business leaders lend their voice and support to cause.

Alzheimer's Reading Room

Left to Right: Lance Armstrong, Mrs. Edith Royal,
Coach Darrell Royal, Matthew McConaughey
(Photo: Business Wire)
Edith Royal described how difficult it is to care for someone in the advanced stages of Alzheimer's disease. Royal said that while Texas ranks third in the nation for the disease, most of the research takes place on the east and west coasts.

Edith Royal, Darrell Royal's wife, described the fund to a Texas legislative committee hearing Tuesday.

Royal, who suffers from Alzheimer's, also appeared at the hearing along with seven-time Tour de France winner Lance Armstrong and actor Matthew McConaughey.

Independence at Home, the Medical Home Model

New studies show that it can be less expensive to care for a person at home; rather than, in a traditional nursing home. The same studies indicate that this also leads to better medical outcomes. A large scale movement to keep the elderly at home is now gaining momentum.

By Bob DeMarco
Alzheimer's Reading Room

There is an excellent article in the New York Times that explains a new type of healthcare and new healthcare model -- A Shift From Nursing Homes to Managed Care at Home.

This new model would include a team of doctors, social workers, physical and occupational therapists, and other specialists, who together would provide managed care for individual patients at home, at adult day-care centers, and in visits to specialists.

I have been writing about this topic and advocating this for a long time. That said, I was surprised to learn that these new programs are starting to spread much faster than I understood.
The number of such programs has expanded rapidly, growing from 42 programs in 22 states in 2007 to 84 in 29 states today. -- Source, New York Times
At the same time, a study by the American Health Care Association indicates that the number of nursing homes has dropped by over 600 in the last six years.

I think most of us understand that the elderly want to stay at home, and out of nursing homes when possible.

I strongly suggest that you take the time to read the New York Times article.

You can also find additional information on Independence at Home, and the Medical Home Model below.

Alzheimer's Reading Room Needs Your Help

Lets make this simple. If you don't help, who will? You get to choose, help, don't help.

By Bob DeMarco
Alzheimer's Reading Room

Dotty Says
I fully endorse this effort
Please Help
The Alzheimer's Reading Room exists today because members of the Alzheimer's community came to me and asked me to start writing more about what I was doing with my mother, and to explain how we were accomplishing so much together.

Since January, 2009 I have spent an average of 5 hours a day working on this website. Along the way, I added some great contributors, and I intend to add more, if I can ever get to it.

Here is a bit of perspective. Last year during a similar 30 day period we had 15,000 unique visitors from Google. This year 45,000. This takes a lot of work. Search engine optimization, social media, sharing, editing, writing. It all adds up to time.

There are about 3,000,000 people searching for information about Alzheimer's on the Internet. Most are Alzheimer's caregivers. Each day on average, about 1,200 new Alzheimer's caregivers are born.

I am asking you to spend about five minutes of your time to help me grow the Alzheimer's Reading Room, and to bring this website into the awareness of the 3,000,000 that could benefit.

I am also asking you to become an Alzheimer's activist. Active in helping other caregivers live a healthy, productive life. To help each caregiver reduce the burdens they feel each and every day.

Alzheimer's and Dementia News Digest 119

Alzheimer's and dementia news from around the world.

Alzheimer's Reading Room

Fiona Phillips: Alzheimer's drugs robbed my dad of life
The Daily Mirror columnist said sedatives doctors gave to Neville, 77, crushed his personality and left him a wreck.

High School Student Researches Pet Therapy for Alzheimer's Patients
High School Senior Michela Paradiso has been working with Alzheimer's patients at the Elmwood Assisted Living Community in Tiffin for her senior project. Paradiso researched the types of pets the residents had before developing Alzheimer's, and matched them with a similar looking stuffed animal dog or cat.

Monday, February 27, 2012

I Wonder If There is a Smorgasbord in Heaven?

Later that night I wonder to myself, I wonder if their is a smorgasbord in Heaven?

By +Bob DeMarco 
+Alzheimer's Reading Room

This is what Jim had to eat
Meatloaf, mashed potatoes, green beans,
and macaroni and cheese.
Last week, I took Jim, Ruth, and Dotty out to dinner at Cracker Barrel Restaurant. This proved to be a very enlightening experience.

When we were leaving home both Ruth and Jim encouraged me to take the wheelchair. I said, don't worry, I'll get Dotty into the restaurant.

As it turned out, it was a real struggle to get Dotty into the restaurant and seated. This was a real eye opener for me. It is getting more and more difficult to move Dotty around while on her feet.

Note to self. Listen to other people.

Perhaps I should have just asked Ruth and Jim, why, don't you think Dotty can make it?  Get some insight and opinion from others when you can.

Sunday, February 26, 2012

Life, With Dementia Behind Bars

Most Alzheimer's caregivers will say that the act of caring for someone with dementia has a positive influence on their life. They change for the better. This is one of the little known positives that come from dementia care.

Alzheimer's Reading Room

Life, With Dementia Behind Bars
Gold Coats
I think most people would be shocked, or at the very least surprised, after reading this story and learning how dementia care can turn a convicted felon into a loving, caring person.

The video below is excellent, and is moving. I suggest you listen to the tone of voice, notice the furrowed brows, and the serious looks on the faces.

This story and video should be shared widely in the Alzheimer's community, and it should be shared with the family and friends of Alzheimer's caregivers.

There is a lesson to be learned.

Make a Joyful Noise, Drum Circles

One of the most enjoyable times in our work is when we bring out drums for a drum circle. We meet people who tell us that can’t play drums because they don’t have any rhythm. We tell them that if they have a heart beat, then they have rhythm in their bodies. 

By +Tom Brenner and Karen Brenner
+Alzheimer's Reading Room

Make a Joyful Noise, Drum Circles
We experience some amazing things in this dementia work.

One of the very best experiences is when we incorporate music into our work. People who may never speak, or have trouble finding common words can still often sing and remember all of the words to favorite songs or hymns.

Improving the Quality of Life of Alzheimer's Patients and Their Caregivers

“In Dr. Brandon Ally’s lab, he has chosen to focus not on what is lost, but what Alzheimer’s patients still retain and how this information can be used to improve their quality of life.”

By +Max Wallack 
+Alzheimer's Reading Room

Brandon Ally
Since completing his NIH sponsored research fellowship at Boston University Alzheimer’s Disease Center, Brandon Ally has continued his work at Vanderbuilt University Medical Center.

Dr. Ally says, "My work has been to understand exactly how memory breaks down in healthy and diseased ageing. Recent aims in the lab have focused on understanding which aspects of memory remain intact, so that potential interventions and strategies can be designed to help memory-disordered patients rely on these intact processes."

Saturday, February 25, 2012

Another Side of Alzheimer’s

An ad by the Alzheimer’s Association soberly reminded readers, “We'd show an Alzheimer's survivor here, if there were one.” That message would be even more onerous if it were not for another side of Alzheimer’s disease if we are alert to it.

By J. Michael Steinhardt

Another Side of Alzheimer’s
It has been two years now getting accustomed to the idea of a family member with Alzheimer’s disease.

That is how long it has been since my sister was diagnosed with “adult onset dementia” at age sixty-six.

I have long since given up trying to fathom the affects of the disease. After all, even medical experts on the disease are still search for a specific etiology.

Taking Charge

Someone is depending on you and someone wants you to stay well because they care about you.

By Susan Larsen Daigle

Change happens.

A life changing event may be anticipated, planned or more often than not -- an uninvited guest. When a loved one is diagnosed with Alzheimer’s, you find yourself thrust into the role of caregiver, and life as you know it can cease to exist.

You might feel as if you have one foot on land and the other on the bow of a boat that is drifting away from the shore. Should you jump? Which way?

Friday, February 24, 2012

Charlie Rose: The Cost of Alzheimer's

Generalized Defects in Cognition- A discussion on Alzheimer's Disease

Alzheimer's Reading Room

Generalized Defects in Cognition A discussion on Alzheimer's Disease hosted by Charlie Rose.

With Eric Kandel of Columbia University, Marc Tessier-Lavigne of Rockefeller University, Alison Goate and David Holtzman of Washington University in St. Louis and Bruce Miller of University of California, San Francisco.

Dotty Loves Her Wheelchair and Chauffeur

Wheelchair chauffeur. Has a nice ring to it. Perhaps I will consider becoming a wheelchair concierge down the road.

By Bob DeMarco
Alzheimer's Reading Room

Bobby
I never thought I would be writing this story. If anything, I would have thought the title would have been, Dotty hates her wheelchair.

After all, Dotty told me hundreds of times "she would kill herself" before she would ever get into a wheelchair.

Even last year, Dotty was refusing to get into the wheelchair to go the pool. It only started happening thanks to some tender loving care and wise words from Jeannemarie. Just so you know, Jeannemarie is the daughter of Jim and Ruth, the couple who took care of Dotty while I was away.

Jeannemarie, more or less, convinced Dotty that it would be a good thing to be chauffeured around by her son Bobby, in a wheelchair.

Thursday, February 23, 2012

Antipsychotics Raise Death Risk in Dementia Patients

Nursing home residents over the age of 65 who take certain antipsychotic medication for dementia are at an increased risk of death. This Harvard Medical School study, the largest ever undertaken among US nursing home residents, looked at 75,445 older nursing home residents.

Alzheimer's Reading Room

Antipsychotics Raise Death Risk in Dementia Patients
Krista Huybrechts
The study was carried out in 75,445 residents of nursing homes in 45 states in the US. All participants were aged 65 or older, and started treatment with antipsychotic drugs between 2001 and 2005.

The evidence provided in the study reinforces that there are risks associated with the use of antipsychotics, and underscores the need to try alternative means of dealing with behavioural problems in older patients with dementia.

“I believe that at this point the evidence is strong that conventional antipsychotics carry a higher risk of mortality than atypical antipsychotics, and their use can therefore not be justified based on the available evidence,” wrote study author Krista Huybrechts of Harvard Medical School.

The study was published online in the British Medical Journal.

Running 4 Answers

Become an Alzheimer's activist

By Bob DeMarco
Alzheimer's Reading Room

Carolyn Mastrangelo
I talked to Carolyn Mastrangelo and Barbara Geiger and I am impressed. They decided to do something about Alzheimer's disease and they are doing it. So far they raised $55,000. Wow.

They are now into their third Alzheimer's fund raising effort -- Running 4 Answers 3

There are two things I like about this effort.

First, the donations go to the benefit of the Cure Alzheimer's Fund, my personal favorite and number one recommendation for Alzheimer's research.

Second, running, I like it. I can't tell you how many times I thought to myself, why are we walking, why aren't we running for a a cure for Alzheimer's? We have to get moving, faster. Let's run.

These women need your help. First and foremost they need donations. Second, they could use some help identifying sponsors.

I mean come on, two women giving their all for a good cause, end Alzheimer's. What business wouldn't want to see their name on the back of every shirt as a sponsor?

Read their story and appeal below. Become an Alzheimer's activist, get involved.

Bob DeMarco and the Alzheimer's Reading Room

I know and understand what an Alzheimer's caregiver can and will accomplish. I know how hard it is to get started. I was in the same place that almost all of us are in at the beginning. I didn't know anything.

By +Bob DeMarco 
+Alzheimer's Reading Room

Bob DeMarco, Alzheimers Reading Room
Bob DeMarco
Jane Gross wrote about me in the New York Times. Today, I noticed that Debra Bendis wrote about me in The Christian Century -- Bob DeMarco lays down his life.

It seems that people are interested in learning what my life is all about. Well, this phase of my life, the Alzheimer's caregiver, Founder of the Alzheimer's Reading Room part of my life.

When I read about myself I kinda scratch my head. I can't say I feel the way I might be being portrayed. I am interested and intrigued though. And, I suppose this is going to happen again, and maybe again.

If you want to know the truth I was hoping that someone out there like 60 Minutes or Nightline would do our story. I say our story because I think the big story here is about Dotty. If someone doesn't do it soon, its gonna be too late. Oh well.

Wednesday, February 22, 2012

Things I learned from the Virtual Dementia Tour Certification Training

You just never know, until you’ve walked a mile in another persons shoes. Once you have done that -- then you have the information to make your own changes.

By Carole Larkin 
Alzheimer's Reading Room

I am now a CERTIFIED TRAINER of P.K. Beville’s thought changing, life changing Virtual Dementia Tour experience. 

This is the most revolutionary teaching tool I have ever seen for caregiving for a person with Alzheimer’s or other dementia. 

Once I went through the tour a few times and had conducted the wrap up/teaching session at the end of it another few times, I knew that I had to carry this tool to all caregivers I could reach. So, I contacted P.K. and asked if I could join her next class.  

Dotty is Deeply Forgetful

I felt good because I just changed my mother, Dotty, back into a whole person.

By Bob DeMarco
Alzheimer's Reading Room

Dotty is Deeply Forgetful
Dotty, 95 years old
and Deeply Forgetful
We recently published an article from Stephen Post, Five Sources of Hope for the Deeply Forgetful, Dementia in the 21st Century.

The article is very deep reading, and as a result, it should be read slowly and carefully. Stephen's message is a message of hope and joy in my opinion.

After considerable thought, I decided to try an exercise on myself to see if these two words, deeply forgetful, would have any "naturally" beneficial affect on my outlook and feelings.


Tuesday, February 21, 2012

What Impact Has Alzheimer's Had on Your Life?

What impact has Alzheimer's disease had on your life, on the lives of your family, and on your relationships with others?

Alzheimer's Reading Room

  • How has Alzheimer's impacted or changed your life?
  • What is your greatest challenge as an Alzheimer's caregiver?
  • Do you think you are being treated fairly by family and friends?
  • Who in your life has stepped up to help you?
  • What websites or organizations have you turned to for guidance?
  • How do you find the strength to keep going?

We are always on the lookout for new perspectives and voices on these issues, and new contributors to write about their caregiving experience.

Share your stories and feelings below in the Add New Comment box.

If would like to submit an article to the Alzheimer's Reading Room -- go here -- to learn how.

ALT Blog Awards -- Learning How to Communicate with Someone Suffering From Alzheimer's Disease

It appears that our article, Learning How to Communicate with Someone Suffering with Alzheimer’s Disease, was nominated for an Alt Blog Award, in the Best Alzheimer’s Disease and Memory Care Articles category.

By Bob DeMarco
Alzheimer's Reading Room

To whomever nominated us, thank you.

If you would like to vote for us in the awards contest, go here.

Once you get to the website, if you go down to the bottom of the page, you can vote for the article you choose. Just click the button and you are done.

I wonder if you get a trophy? If so, we could make a video of Dotty accepting the award (if we win). That would likely prove to be entertaining.

Monday, February 20, 2012

With a Little Help from My Friends

We don’t want to frustrate or upset the people we care for, but we do want to give them every opportunity to be as independent and successful as they can be, for as long as they can be. Sometimes, we need just a little help from our friends.

By Tom and Karen Brenner
Alzheimer's Reading Room

With a Little Help from My Friends
Betty was filling the watercolor paper with multi-colored dots.

Dots of blue and green and yellow and pink were raining down everywhere on the paper. Suddenly,

Betty stopped and looked questioningly at the aide sitting next to her.

Five Sources of Hope for the Deeply Forgetful, Dementia in the 21st Century

Carers are the beacons of hope to be acknowledged and celebrated in their depth of commitment. They sway the social balance toward goodness not with single great acts of love but rather with daily small actions done in great love.

By Stephen Post

Five Sources of Hope for the Deeply Forgetful
Stephen G. Post
THE 21ST CENTURY

Despite all efforts to the contrary, as the second decade of the 21st century dawns, biomedical efforts to delay, prevent, or cure dementia are showing no significant success.

The history of science is of course replete with surprising examples of victory plucked from the wings of despair, and indeed “serendipity favors the prepared mind.”

Without giving in to scientific defeatism, it does seem fitting to focus our hope on care itself, and on how we can create cultures that value people who are so deeply forgetful.

There is no magic bullet for dementia, but we can place hope in these three things:
  1. the compassionate carers who manifest our deepest sense of a shared humanity despite cognitive decline;
  2. the increasing evidence for enduring selves beneath the chaos of neurological devastation (1);
  3. and the possibilities of a spiritual-cultural evolution toward acceptance, affirmation, and connection with the deeply forgetful (2-4).
In this presentation I will discuss and assess these sources of hope in the world of the deeply forgetful.

Treating Depression: Are Placebo as Effective as Antidepressants? (60 minutes)

After watching, Treating Depression: Is there a placebo effect? on 60 Minutes, I had to ask myself, if dementia patients were enrolled in a perpetual clinical trial where they received placebo, would it make a difference?

Alzheimer's Reading Room

Irving Kirsch
Do antidepressants work?

Since the introduction of Prozac in the 1980s, prescriptions for antidepressants have soared 400 percent, with 17 million Americans currently taking some form of the drug. But how much good is the medication itself doing?
"The difference between the effect of a placebo and the effect of an antidepressant is minimal for most people," says Harvard scientist Irving Kirsch. Will Kirsch's research, and the work of others, change the $11.3 billion antidepressant industry? Lesley Stahl investigates.

Sunday, February 19, 2012

R.I.P. John Garrett

Authorities find body of missing Peoria man with Alzheimer's disease

Authorities have found the body of a 73-year-old central Illinois man who had been missing for more than a week.

Search crews had been looking for John Garrett of Peoria for a week. He had Alzheimer's disease and had last been seen near a park. Authorities say he had wondered form his home while his wife was napping.

The (Peoria) Journal Star reported Sunday (http://bit.ly/yM8GA3 ) that his body was found about 9:45 a.m. Sunday near the entrance of Jubilee College State Park.

Hundreds of volunteers helped search for Garrett.

Current Science, Dementia in the 21st Century

Despite all efforts to the contrary, as the second decade of the 21st century dawns, biomedical efforts to delay, prevent, or cure dementia are showing no significant success.

By Stephen Post

THE 21ST CENTURY

Current Science,  Dementia in the 21st Century
Stephen G. Post
Despite all efforts to the contrary, as the second decade of the 21st century dawns, biomedical efforts to delay, prevent, or cure dementia are showing no significant success.

The history of science is of course replete with surprising examples of victory plucked from the wings of despair, and indeed “serendipity favors the prepared mind.”

Without giving in to scientific defeatism, it does seem fitting to focus our hope on care itself, and on how we can create cultures that value people who are so deeply forgetful.

There is no magic bullet for dementia, but we can place hope in these three things:
  1. the compassionate carers who manifest our deepest sense of a shared humanity despite cognitive decline;
  2. the increasing evidence for enduring selves beneath the chaos of neurological devastation;
  3. and the possibilities of a spiritual-cultural evolution toward acceptance, affirmation, and connection with the deeply forgetful.

Saturday, February 18, 2012

Advisory Council on Alzheimer's Research, Care, and Services -- Goal 4: Enhance Public Awareness and Engagement

Asking organizations who's life blood is raising money to cooperate is like asking the "fox to guard the chicken coup".
These organizations have already decided that a message of fear is what resonates. Resonates is a code word for "raises money".

Alzheimer's Reading Room

In January, 2012, The Draft Framework for the National Plan to Address Alzheimer's Disease was released.

The draft framework was structured around five ambitious goals:
  • Prevent and Effectively Treat Alzheimer's Disease by 2025.
  • Optimize Care Quality and Efficiency.
  • Expand Patient and Family Support.
  • Enhance Public Awareness and Engagement.
  • Track Progress and Drive Improvement.

The Advisory Committee has now released a series of action proposals on each of the five goals contained in the draft framework.

In this article we will focus on Goal 4: Enhance Public Awareness and Engagement.

Alzheimer's and Dementia News Digest 117

There is a significant amount of research on dementia, memory, and  progressive neurodegenerative disease being released this week at the American Academy of Neurology (AAN). The research is also being published in the journal Neurology®.

Alzheimer's Reading Room

Here is a recap with short descriptions, comments, and links.

How Fast You Walk and Your Grip in Middle Age May Predict Dementia, Stroke Risk
Simple tests such as walking speed and hand grip strength may help doctors determine how likely it is a middle-aged person will develop dementia or stroke. Researches explored the association of two simple office based tests, walking speed (WS) and hand grip strength (HGS), with the risks of incident dementia and stroke/TIA, and with brain MRI and cognition.
Read more here and here.

Alzheimer's Caregiving, It's All in the Palm of Your Hand

Listen up. Many of the persons suffering from Alzheimer's can't make decisions. So, they do what they can do. They say NO.

They can't make a decision and when they are saying NO they are telling you they can't decide. No is the biggest, most frequently used, word in the Alzheimer's World dictionary.

By Bob DeMarco
Alzheimer's Reading Room

Communicating in
Alzheimer's World
Back in early 2009, a few of the early readers of the Alzheimer's Reading Room wanted me to write about my own experience as an Alzheimer's caregiver. So I decided to write about my own metamorphosis. This metamorphosis continues to this day. I am constantly changing and refining my approach.

I didn't realize it at the time, but the decision to get serious about the Alzheimer's Reading Room brought with it great benefit for both Dotty and me.

As I began to write I was forced to think about my own caregiving effort. This lead me to examine what I was doing in greater detail. I soon realized I could improve on everything I was doing through greater systematizing of my own thoughts, efforts, and philosophy.

Friday, February 17, 2012

Singing Dementia Patients Get Thrown Out On Their Butts

A GROUP of dementia patients have been left "high and dry" after a brewery yanked its use of a meeting room for its weekly singalong.

By Bob DeMarco
Alzheimer's Reading Room

Here is the situation.

A group of dementia patients were using a meeting room at Moorhouse's Brewery for their therapeutic ‘singing workshops’. Unfortunately, it turned out that the group was too "noisy" and disrupting other meetings that were going on at the same time. Don't blame Moorhouse, at least they were willing to give it a try.

So now Burnley based Crossroads Care (East Lancashire) in the U.K. is without a place to hold its weekly "singalong".

We have over 10,000 readers each month coming in from the U.K. So maybe one of you can help Crossroads Care in Burnley find a new 'suitable" location. Here is the contact number 01282 832548.

You can read more about this situation here.

This singalong is a good idea in my opinion, and I hope others will try and organize similar events.

Listen to the group sing in this video.

Alzheimer's Gene Study Launched by NY Genome Center, Illumina, Feinstein

Up to 1,000 Genomes to be Sequenced over Four Years in Search of Susceptibility Genes Associated with Alzheimer's Disease in Patients

Alzheimer's Reading Room

New York Genome Center (NYGC), in collaboration with Illumina, today announced at the Advances in Genome Biology and Technology (AGBT) annual meeting the initiation of a large-scale whole genome sequencing project with the Feinstein Institute for Medical Research.

NYGC is a public-private coalition of universities, medical centers, technology partners, pharmaceutical companies and private philanthropists that are engaged in a cooperative effort to transform medical research and clinical care.

Thursday, February 16, 2012

Dr Bobby, or Dr Ralph Roister Doister?

When we get done I demonstrate to Dotty how to clear her throat, you know that really big sound where you are gathering up all the snot and making what was called a "lunger" when I was a kid. A lunger is like a thick wad of slimy spit.

By Bob DeMarco
Alzheimer's Reading Room

Lunger
I read a lot. Thanks to mom, dad, and God, I have a good facility to absorb information, file it away, and put it to good use somewhere down the road.

I'm also very curious. I still remember the time I got in a lot of trouble when I was six years old for being "too" curious. Curiousity does work for me though because I read all kinds of stuff, and later apply that stuff to a difficult situation or problem.

Most people don't think I go anywhere. Not true. I go into Alzheimer's World (AW) every day. No, for those who have asked, I don't get lost in AW, I know how to navigate in and out. You can't catch it.

I also go up into my Bunkhouse all the time. Usually when I am up in the Bunkhouse I am trying to figure something out. When using Bunkhouse logic you can boil down any problem to a single issue. It is not always easy to discover the "issue", but once you do then you only have one simple thing to focus on. This helps.

It is a lot easier to solve a problem when you understand the problem. This requires one to look at the problem from every possible angle.

Here is the problem, Dotty is having consistent around the clock headaches.

I asked, Do You Know Who Harvey Is?

I knew all along that Dotty believes Harvey is real. However, I thought she believed he was a real parrot, so I could never have expected this answer.

By Bob DeMarco
Alzheimer's Reading Room

Harvey
Last night Dotty seemed a bit disoriented when ice cream time rolled around. She was on the sofa and I asked, do you want some ice cream? She answered yes. But, she didn't move.

I said, okay lets go up front. She responded, up front where? I said, upfront to the kitchen where you usually eat your ice cream.

She looked befuddled.


Wednesday, February 15, 2012

Bexarotene and Alzheimer's

Everything You Want to Know about Bexarotene and Alzheimer's

+Alzheimer's Reading Room

Always, Seek, Knowedge


1. Cancer Drug (Bexarotene) Erases Alzheimer's Symptoms in Days

Neuroscientists at Case Western Reserve University School of Medicine have made a dramatic breakthrough in their efforts to find a cure for Alzheimer’s disease.
The drug in question, Bexarotene has been approved for the treatment of cancer by the U.S. Food and Drug Administration for more than a decade.
Continue Reading - Cancer Drug (Bexarotene) Erases Alzheimer's Symptoms in Days

A Spiritual Cultural Evolution , Dementia in the 21st Century

Imagine a world in which gentleness, patience, and calming care triumph over hostility and violence. Imagine a world in which caring for the deeply forgetful is deemed a privilege and a trust.

By Stephen Post

Stephen G. Post
I do believe that we will see a spiritual-cultural shift away from the ideology of “hyper-cognitive values” that has regrettably blinded us to the enduring selves underlying the deeply forgetful.

How can we encounter the deeply forgetful outside of hyper-cognitive ideologies?

How can we bear witness to the reality that persons with this cognitive disability possess inherent qualities, and create a culture where all are welcomed and celebrated regardless of cognitive limits and vulnerability?

Note: A Spiritual-Cultural Evolution is one section of a larger article, Five Sources of Hope for the Deeply Forgetful: Dementia the 21st Century. We will publish the aritcle in full later this week.

Tuesday, February 14, 2012

Overeating In Elderly Tied to Memory Loss

A study conducted by a team of Mayo Clinic researchers suggests that overating may double the risk of memory loss or mild cognitive impairment (MCI) in people over 70.

Alzheimer's Reading Room

Overeating In Elderly Tied to Memory Loss
Ronald C. Petersen
Conversely, the study suggests that cutting calories and eating a healthy diet may be a way to prevent memory loss as we age.

The results remained the same when accounting for other risk factors for memory loss, including history of stroke, diabetes, and years of education.

Conclusion: In this population-based case-control study, increased caloric intake was associated with increased odds of having MCI.

Dotty, Let Your Eyes Tell Your Feet Where to Go

The right tone of voice and patience are real keys in this situation. As a carer you have to get some real focus on your mission in situtations like this one.

By Bob DeMarco
Alzheimer's Reading Room

Dotty's
Blooming Rose
Dotty is having more and more trouble walking. Her overall awareness is also breaking down.

Sadly, all of this is to be expected.

Nevertheless, this does not deter me from trying to improve the situation, or make the best of the way things are.

Overcoming Denial When a Loved One Shows Signs of Alzheimer’s Disease

Alzheimer’s is, above all, an insidious disease. Its symptoms begin so mildly and progress so slowly that it’s easy for friends and loved ones to deny them until one day there’s a ‘defining incident;’ an incident so bizarre that not even the spouse, child or other loved one can ignore it or explain it away.

By Marie Marley

Overcoming Denial When a Loved One Shows Signs of Alzheimer’s
Various ‘defining incidents’ have been recounted by loved ones. Some people get lost driving home and end up bewildered and many miles away. Some leave the house in their pajamas and some fail to recognize a close friend or family member. These are just a few of hundreds of examples.

Yet the disease starts with things of little or no significance. Not being able to come up with a common word. Mixing up someone’s name. Forgetting to turn off the stove. Things we all do from time to time.

But for the person just entering the fringes of early Alzheimer’s they may begin to happen more and more often.

Monday, February 13, 2012

Details About Infection Rates at America’s Hospitals

You can Discover the Rate of Infection at your Local Hospital

By Carole Larkin  
Alzheimer's Reading Room

On Tuesday, the Centers for Medicare and Medicaid Services (CMS) announced that information about central line-associated bloodstream infections (CLABSIs) will now be included on the government’s Hospital Compare website.

The website will include data about how often these preventable infections occur in hospital intensive care units across the country. CMS says the new feature holds hospitals accountable for bringing down these rates.

CMS officials said that these infections are among the most serious of all health care-associated infections and result in thousands of deaths each year and nearly $700 million in added health care costs.


I get weekly notices from Medicare on the latest happenings. I thought this would be of interest to readers.

Compassionate Care, Dementia in the 21st Century

Quote Compassionate Care

By Stephen Post

Stephen G. Post
Each time we approach a deeply forgetful person with a kindly tone of voice, a reassuring facial expression, and call them by name with a smile we are participating in an intervention that is as significant as any biotechnical one of which I am aware.

It is the compassionate carers who remain the best hope, and who serve as antidote to violence and Machiavellian values.

Carers are the beacons of hope to be acknowledged and celebrated in their depth of commitment. They sway the social balance toward goodness not with single great acts of love but rather with daily small actions done in great love. They model for the human capacity to accept, affirm, and connect with the deeply forgetful.

Note: Compassionate Care is one section of a larger article, Five Sources of Hope for the Deeply Forgetful: Dementia the 21st Century. We will publish the aritcle in full later this week.

Sunday, February 12, 2012

Glen Campbell: Forget Me Not

"There were people in his inner circle that were concerned that if this information came out, people wouldn't book him for fear that he would have bad shows," says Raymond. "There were concerns that it would it would hurt him. And since he decided to make the diagnosis public, it's been nothing but the opposite."

Alzheimer's Reading Room

I sit here wondering? What effect are the announcements by Glen Campbell and Pat Summitt that they are living with dementia having on the general public? Are these announcements and stories changing the stigma that is sometimes attached to Alzheimer's?

I wonder, is the message getting through -- there is life after a diagnosis of dementia.

I know that attitudes and behaviors change slowly. This is especially true when people are uninformed, uneducated.

It seems to me that Alzheimer's is beginning to come out of the dark and into the light. I am reminded that stigma was attached to cancer and HIV/Aids.

What do you think?

Here is a very good audio story on Glen Campbell, transcript included.

Dotty Sings Letter, Discusses Poop, and Uses the Vernacular Term

I'm Gonna Sit Right Down and Write Myself a Letter

Alzheimer's Reading Room

Dotty Sings briefly, "I'm Gonna Sit Right Down and Write Myself a Letter"

"I'm Gonna Sit Right Down and Write Myself a Letter" was first recorded and made popular by Fats Waller in 1935.

Dotty was listening to the music channel, and when this song came on she started singing. I was caught off guard so I only caught a snippet. What do you think?



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Dotty Needs to Poop

Dotty can be graphic in the use of her words and descriptions. She "needs to use the toilet in this one". Comments?


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Is Bexarotene A Magical Cure for Alzheimer's, or a Magic Eraser

I admit, I am tempted to buy Bexarotene off-label for my mother, Dotty. What is the risk? She is almost 96 years old, and in an advanced stage of Alzheimer's. On the other hand, I must ask myself, what are the consequences if I harm or kill her? Those consequences aside, would I be able to live with myself if I harmed her?

By Bob DeMarco
+Alzheimer's Reading Room

Is Bexarotene A Magical Cure for Alzheimer's, or a Magic Eraser

Lets start with the full disclosure. I am not a doctor or a scientist. The opinions stated here are my own, and based on information that is currently available to me.

This week the Alzheimer's community is buzzing about a new research study published in Science Express that indicates amyloid plaque (Abeta) was removed from Alzheimer's infected mice in a few hours by an already existing, FDA approved drug, Bexarotene.

The immediate question, can you buy the drug off label? The simple answer is yes. All you need is a doctor that is willing to write the prescription.

I already know from the emails I am receiving, and from the responses of scientists, doctors, and neurologists, that people are asking for the drug.

Saturday, February 11, 2012

How Much Does Bexarotene Cost, Will Alzheimer's Patients Buy it Off Label?

Do you know where I can buy Bexarotene? Do you know a doctor that would prescribe Bexarotene off-label for my mother? Are you going to buy Bexarotene for Dotty?

By +Bob DeMarco 
+Alzheimer's Reading Room

How Much Does Bexarotene Cost, Will Alzheimer's Patients Buy it Off Label?
The Alzheimer's community caught on fire with the news that an already approved (FDA) cancer drug, Bexarotene, erased beta amyloid (Abeta) from the brains of mice stricken with Alzheimer's disease. It did this in a matter of hours and days.

A miracle?

Lets put it this way. The phones of doctors, neurologists, and pharmacists all over the world were ringing off the wall on Friday with loved ones of Alzheimer's patients asking, can I buy Bexarotene (brand name Targretin)?

See:

Is Bexarotene a new wonder drug for Alzheimer’s?

Moving from “mice to men” is a big leap that requires more careful and expensive research.

+Alzheimer's Reading Room

Bexarotene, a new wonder drug for Alzheimer’s?

Dr. Gary Landreth and colleagues at Case Western Reserve published a paper online in Science Express yesterday that received much attention because of the rather stunning results it reports in stopping and even reversing “a broad range of Abeta-induced deficits”.

A good lay version of this, with comments from Cure Alzheimer’s Fund supported researchers Sam Gandy of Mount Sinai Medical School and David Holtzman of Washington University in St. Louis, can be found in the Feb. 9 edition of the Huffington Post Healthy Living section online here.

Friday, February 10, 2012

Cancer Drug Erases Alzheimer's, Video Explanation

Neuroscientists at Case Western Reserve University School of Medicine have made a dramatic breakthrough in their efforts to find a cure for Alzheimer’s disease. This video contains a clear, concise explanation of the research.

By Bob DeMarco
Alzheimer's Reading Room

I brought this video back up for those that are asking question about this stunning research.

Here are some important points.
  • This research was conducted at a top notch, reputable University, Case Western Reserve University School of Medicine.
  • The drug, Bexarotene, has been approved for the treatment of cancer by the U.S. Food and Drug Administration (FDA) and has been available for more than a decade.
  • Available information indicates that Bexarotene has a good safety and side-effect profile. This is important.
  • Dr.Gary Landreth said that clinical trials in humans will start soon.
  • Rudy Tanzi commented here, "If this drug performs in humans that way it has in Alzheimer's mouse models, it will be terrific for Alzheimer's patients".

If We Must Choose, Choose Compassion

If I have to choose when considering what to say, I try to choose with compassion.

By Pamela R. Kelley
Alzheimer's Reading Room

I was fascinated by the recent article presenting us with the choice, Should A Caregiver Be Truthful or Kind?

It seemed like there were a couple of topics embedded within. It seemed like they needed to be dissected before I could really understand what had piqued my interest and the many who commented.

The first topic was the practical one – advice on how to deal with the questions our loved ones ask about those who have predeceased them.

The comments reveal what a tricky question this can be, from one person to another, or from one moment to another for the single person for whom we give care.

Thursday, February 9, 2012

Drug Quickly Reverses Alzheimer’s Symptoms in Mice Video

Case Western Reserve Researchers Discover FDA-approved Drug Rapidly Clears Amyloid and Erases Alzheimer's Sumptoms.

Alzheimer's Reading Room

Neuroscientists at Case Western Reserve University School of Medicine have made a dramatic breakthrough in their efforts to find a cure for Alzheimer’s disease.

The drug in question, Bexarotene, has been approved for the treatment of cancer by the U.S. Food and Drug Administration for more than a decade.


Cancer Drug Erases Alzheimer's Symptoms in Days

Neuroscientists at Case Western Reserve University School of Medicine have made a dramatic breakthrough in their efforts to find a cure for Alzheimer’s disease. The drug in question, Bexarotene has been approved for the treatment of cancer by the U.S. Food and Drug Administration for more than a decade.

Alzheimer's Reading Room

Cancer Drug Erases Alzheimer's Symptoms
Gary Landreth
In the study described below, the cancer drug Bexarotene quickly and dramatically improved brain function and social ability and restored the sense of smell in mice bred with a form of Alzheimer's disease.

Imagine this.

Within hours of taking the drug, amyloid plaques began to clear out of the mice’s brains. After three days, more than 50 percent of the Alzheimer’s plaques had disappeared, and the mice regained some of the cognitive and memory functions typically lost in Alzheimer's disease.

How do you get the drug? The drug is approved by the FDA (U.S. Food and Drug Administration )for the treatment of skin cancer. As far as approval for the treatment of Alzheimer's it has a long way to go. The leap from mice to several phases of human clinical trials takes many years. And so far, a long list of promising Alzheimer's drugs have failed in clinical trials.

An Alzheimer’s Valentine

Like an old photograph, memory can fade away

By Tom and Karen Brenner
Alzheimer's Reading Room


My Mum

I sat down and cried, thinking why did this happen to my Mum who I loved so much? She had always been there for me, so now it was me who would be there for her.

By Diane Jones

My Mum was a lovely lady – happy, always smiling, the slightest thing would make her laugh.

Being married to my dad who was a Company Sergeant Major in the Armed Forces, meant that as a family we moved a lot, but my Mum took this all in her stride, being the lady that she was.

She had her 3 daughters, and to her, we were her life.

My Mum left school very early, and went to work for Moss Bros Tailors. She was very good at her job. She always made sure that her girls came first.

Mum started to take in sewing and the more she done, God – she was alight! I can remember her smile, beaming. She loved anything to do with sewing and knitting.

Wednesday, February 8, 2012

Can Deep Brain Stimulation Enhance Memory in Alzheimer's Patients?

The medial temporal structures, including the hippocampus and the entorhinal cortex, are critical for the ability to transform daily experience into lasting memories.

Alzheimer's Reading Room

Brain"
Click Image for Larger View
We are certainly getting some interesting research on the brain this past week. This should quiet the naysayers that have somehow concluded that nothing is being done to solve the mysteries of the brain as they relate to Alzheimer's disease.

While the study described below is small, it does raise some intriguing possibilities. The issue could the brain of someone suffering from Alzheimer's have their brain electronically stimulated in a way that would open the door to recall via the entorhinal cortex. The entorhinal cortex is the doorway to the hippocampus.

The entorhinal cortex - hippocampus system plays an important role in memory storage, and in particular spatial memories including memory formation, memory consolidation, and lasting memory.

This line of research has interested me for some time.

Should A Caregiver be Truthful or Kind?

Today I bent the truth to be kind, and I have no regret, for I am far surer of what is kind than I am of what is true. -- Robert Brault

By Bob DeMarco
Alzheimer's Reading Room

Should A Caregiver be Truthful or Kind?
Recently, I had an interesting and wonderful conversation with Susan Frederickson, the Caregiver Program Specialist, for the Area Agency on Aging of the Permian Basin (Midland, Texas).

Susan is full of knowledge and has a deep understanding of Alzheimer's caregiver life.

We talked about a long list of issues that Alzheimer's caregivers deal with each day, and today I decided to write about "Lies".

About how difficult it can be when a person living with Alzheimer's asks a question that if answered "truthfully" is likely to cause sadness, confusion, or might be met with challenging behavior.

The issue.

Is it more important to be truthful and cruel; or more important, to be kind?

Alzheimer’s and Employment

Be aware that Social security recently ruled that Early Onset Alzheimer’s disease qualifies for its “Compassionate Allowance “list of diseases.

By Carole Larkin
Alzheimer's Reading Room

I am encouraged by seeing more and more excellent articles on various aspects of living with Alzheimer’s or related dementias.

One of these articles that caught my eye is in the December/January issue of Neurology Now, the American Academy of Neurology’s Magazine for Patients and Caregivers.

The magazine is FREE to individuals with a neurologic disorder and their caregivers. Order yours by calling 1-800-422-2681 or just go to: Neurology Now and sign up.

The article was called “Dementia in the Workplace” and was written by Gina Shaw. It had a number of issues and possible answers in it in regards to being on the job with Alzheimer’s (or MCI). I’d like to bring some of them up for discussion.

Tuesday, February 7, 2012

Obama Administration Makes Alzheimer’s Research Top Priority

“Alzheimer’s takes a devastating toll on millions of Americans,” said Kathleen Sebelius, secretary of Health and Human Services. “It’s a very important health issue. The time for bold action is right now.”

Alzheimer's Reading Room

We at Cure Alzheimer’s Fund are delighted by today’s announcement by the Obama administration that within the next two years, $156 million will be provided for Alzheimer’s research and caregiver support.

Fifty million will be made available immediately, and another $80 million will be in the Fiscal Year 2013 budget. Also made available immediately will be $26 million in caregiver support, provider education, public awareness and improvements in data infrastructure.

Smoking Linked to More Rapid Cognitive Decline in Men

Compared with with men who never smoked, middle-aged male smokers experienced faster cognitive decline in global cognition and executive function.

Alzheimer's Reading Room

Smoking Linked to More Rapid Cognitive Decline in Men
Smoking is a known risk factor for dementia, but the extent to which it is a risk factor for cognitive problems earlier in life is less well understood.

The results of the research study below suggests that men who smoke experience more rapid cognitive decline, and men who continued to smoke experienced greater decline in all cognitive tests.

Data for tbis study were obtained from 5,099 men and 2,137 women