Although I wish I were this insightful and articulate, what follows are not my words, they are words about my words:

Alzheimer’s from the Inside Out

Synopsis: Receiving a diagnosis of Alzheimer’s disease profoundly alters lives and creates endless uncertainty about the future.  How does a person cope with such a life-changing discovery?  What are the hopes and fears of someone living with this disease?  How does he want to be treated?  How does he feel as the disease alters his brain, his relationships, and ultimately himself?

Richard Taylor provides illuminating responses to these and many other questions in this collection of provocative essays.  Diagnosed with Alzheimer’s disease at age 58, the former psychologist courageously shares an account of his slow transformation and deterioration and the growing division between his world and the world of others.

Individuals with early-stage Alzheimer’s disease will take comfort in the voice of a fellow traveler experiencing similar challenges, frustrations, and triumphs.

With poignant clarity, candor, and even occasional humor, more than 80 brief essays address difficult issues face by those with Alzheimer’s disease, including

• the loss of independence and personhood
• unwanted personality shifts
• communication difficulties
• changes in relationships with loved ones and friends
• the declining ability to perform familiar tasks

This rare, insightful exploration into the world of individuals with Alzheimer’s disease is a captivating read for anyone affected personally or professionally by the devastating disease.  Individuals with early-stage Alzheimer’s disease will take comfort in the voice of a fellow traveler experiencing similar challenges, frustrations, and triumphs.  Family and professional caregivers will be enlightened by Taylor’s revealing words, gaining a better understanding of an unfathomable world and how best to care for someone living in it.

Reviewed by: David O. Staats, MD (University of Oklahoma Health Sciences Center)

Description: This is a single-author; first-person account of what it is like to have early Alzheimer’s disease.  The author is a retired psychologist.

Purpose: Its purpose is to let the lay public and healthcare providers know what is ticking inside the head of a person who has early Alzheimer’s disease.  These are worthy objectives and they are well met in this book.

Audience: Many persons will respond to this telling, ranging from a lay audience to the full range of social scientists.  Physicians at all levels of training will find use of his suggestions of how to approach the patient and how not to behave in front of early dements.

Features: This is a series of short essays, most several pages long.  Interspersed are quotes from Internet sources.  At the end there is a list of organizations that serve persons with Alzheimer’s disease and their loved ones.

Assessment: This is such a personal telling of a tale.  The voice of the author, alternatively sardonic, then questioning and imploring, has a wonderful tone.

The breadth of stories cited is the mark of a very wise person.  Part Eric Berne, part Henry Fonda in “On Golden Pond,” part the final movement of Mahler’s Das Lied von der Erde, this work moves on to tears.

Thank you Dr. Staats, Richard

The single biggest problem with communication is the illusion that it has taken place.

- G.B. Shaw

Several months ago, responding to a law signed a year ago, the Federal Government began to form a committee to suggest to the agencies of the Federal Government how to belatedly respond to the Public Health Crisis created by the Baby Boom generation reaching an age where the symptoms of dementia are most likely to show themselves.

The first thing they did was to stop calling this a dementia health crisis and renaming it the Alzheimer’s disease crisis.  Just exactly who pushed that relabeling/redefinition of the 55+ forms of dementia into just one form (Alzheimer’s Disease) is anyone’s guess, but I have my own strong suspicions.

Promoting the myth of a “world without Alzheimer’s disease,” is more a slogan than it is to raise money.

The second thing they did was to decide that inquiries from the general public (you and I, just to name a few) should be referred to the Federal Registry.  It contains the history of the rules, regulations, and whatever else agencies and committees of the Government want to release to the public.  These are less reports.nothes of how and what went on, and more a record of what conclusions were drawn.

The third thing they did was to pack the committee with cure research true believers.  There is no champion of psychosocial research, they were required to include two human beings who were advocates of people living with dementia just that they be advocates.

The fourth thing that happened was our National Alzheimer’s Association presented the committee with a 48-page report, listing the 10 things that in their collective heart the committee must deal with.  This report was purportedly based on the newly discovered voices of people with dementia, their caregivers, and unnamed advocates.  To no one’s surprise, these demands mirrored the interests of the National Association, and just happened to support their 20+-year vision/quest to create a “world without Alzheimer’s.”

In the past two months, I have responded to each of their demands.  This month, I offer my own suggestions.  I previously, on two occasions, offered these to the association, but somewhere along the line, they were voted down and/or ignored.  They know what they know, and seem to have very little interest in discovering what they don’t know - other than the ingredients of a cure pill and/or an Alzheimer’s Disease vaccination.

I realized there are a limited, too limited number of dollars ear marked for Alzheimer’s disease research.  More than 90% of those dollars go towards pharmacologically based bench research.  Psychosocial research gets what is left over.

While I believe basic brain research should be expanded.  While I believe pharmacologically based research should continue.  Neither of these focuses should steal from the real need for research - how 5+ million people living with the symptoms of dementia can live a purpose filled, engaged, interpersonally satisfying life with the worsening symptoms of dementia.

Therefore, many of my recommendations deal with setting funding priorities.

If I had the ear of the President for a weekend at Camp David, I would suggest we first play horse, then if he didn’t beat me too badly, I would suggest a one-on-one game, then I would say:

1. The Federal Government should take 6 months and decide for itself how best to spend its research dollars.  Do not blindly follow the self-serving advice of “Alzheimer’s” researchers, associations, drug companies, or other “Alzheimer’s Disease experts.”  Bring together social scientists, researchers from other fields, people living with dementia and their caregivers, and let hem each and all be a part of the process of evaluating and setting national goals and practices. Read what the NIH itself said last year about how successful Alzheimer’s Research has been, and what the outlook for success (or in this case not).  What is needed is leadership to organize and fund research.  This is what the different Federal funding sources could collectively accomplish.
2. Over the next three years bench/basic/brain research (as it relates to Dementia) should reach the point where 40% of the available research dollars goes towards the development of pharmacological support for those living with the symptoms of dementia.  Over the next three years, “socialceuticals” (non-pharmacological, person centered, this life enhancing research), focusing on the real issues facing those living with the symptoms and their caregivers should reach the point where 60% of the available research dollars are earmarked for this type of research.
3. Each successive year beyond the next three, that - if funding by the Federal Government fails to move us closer (as determined by the NIH) to a “world without Alzheimer’s”, 5% funding will be moved from pharmacological cure research to non-pharmacological psycho social research each year such a finding is made.  If and when progress has been deemed to be achieved, then 5% of funding will be moved back to pharmacological cure research.
4. The President should grow his hair longer and wear it slightly over the top of his ears, perhaps also grow or weave a short ponytail.  (He should grow a set of handlebars, too!)
5. HHS (Health and Human Services) should assume the responsibility to lead the States and Towns in a massive education venture that directly addresses the myths, hoaxes, and lies about those living with the symptoms of dementia , and organizes and promotes professional and lay social support networks for all people with all forms of dementia in all levels of the disability.
6. HHS should coordinate the existing services of their agents to develop, promote, and act as a partner with other professionals in funding, providing, and evaluating direct care support services to those who are living with the symptoms of dementia and their care partners.
7. HHS should declare Dementia (not Alzheimer’s disease) as a Nation-wide epidemic, and urge the UN to declare it a pandemic.
8. States should be mandated to meet Federal care standards for all persons in all settings of enhanced care communities.  Special attention should be applied to significantly lower the staff-to-elder ratios.
9. As a condition of accepting more federal funds for most anything, organizations, for profit and not for profit Associations who seek to meet the needs of people living with dementia and their caregivers, especially those who raise money using the labels of dementia, should prove they are expending at least 50% of their income in direct research.services of those currently living with the disability of dementia.
10. The President should report to Congress every four months the status of this National Health crisis.  And, he should read this report aloud and discuss the progress in a televised prime time news conference.  Currently, there is no palpable sense of urgency in the citizens, politicians, and media of the United States to actively engage in a fully funded campaign of awareness and support for citizens living with the symptoms of dementia.  This current law passed the U.S.A.’s Senate five or so years after the idea was presented.  It passed the Senate unanimously because it is unfunded.  It costs nothing to pass, it promises no new funds/funded initiatives.  It is based on the hope of the Gingrich commission that we could save so much money by eliminating waste and duplication with the federal funding mechanisms.  We could spend more on cure research and may even actually be spending less overall.  Please, Mr. President, please lead us through this public health crisis.  Please!
11. As a condition of accepting more federal funds for most anything, organizations who claim to be supporting the needs of all people with all forms of dementia should establish they are spending at least 25% of their income on psychosocial and transitional psychosocial research.
12. Sorry, I first wanted to come up with 10 suggeer of suggestions, but I cannot, at least right now. Perhaps if the President and I inhaled for an hour or so, we could be more creative.

Richard

Am I truly a Heretic?  And, if so, what is my fate?

in 1600, Giordano was burned at the stake in Rome for the heretical idea that the stars are similar to the Sun.

Filippo Bruno was born in Nola (in Campania, then part of the Kingdom of Naples) in 1548, the son of Giovanni Bruno, a soldier, and Fraulissa Savolino.  In his youth he was sent to Naples for education.  He was tutored privately at the Augustinian monastery there, and attended public lectures at he Studium Generale.  At the age of 17, he entered the Dominican Order at the monastery of San Domenico Maggiore in Naples, taking the name Girodano, after Giordano Crispo, his metaphysics tutor.  He continued his studies there, completing notiate, and became an ordained priest in 1572 at age 24.  During his time in Naples he became known for his skill with the art of memory and on one occasion traveled to Rome to demonstrate his mnemonic system before Pope Pius V and Cardinal Rebiba.

Eventually, he was thrown out of the priesthood and burned at the stake because of his heretical astrological beliefs.

Richard Taylor was born in Chicago, a city in the State of Illinois, the son of Maurice Taylor, a body and fender repair person, and Jeanette Taylor.  His youth could most charitably be described as mis-spent.  Focusing on the pleasures of the flesh, recreational drugs, and radical political change, he became a high school debate coach, a trainer, a psychologist, a counselor, a teacher, a professor, a graduate student (for more years than were necessary or desirable), a marketing consultant, a hospital administrator, and several other careers that have since slipped from his mind.  During his time in Houston he became known for his skill in covering up the memory-related symptoms of dementia which plagued him from the fifty eighth year of life until he died (which by the way he has yet to do, die that is).  On many occasions, he traveled all over the United States of America, an to four other continents speaking about what it was like for him to live with the symptoms of dementia.  He did once attend a private audience with the Pope (along with 124 other folks), but he did not chat about his dementia diagnosis because the audience occurred thirty years after he was diagnosed.

He has not been burned at the stake for his beliefs, just ignored by, in this case Chicago (home of the National Alzheimer’s Association), not Rome (home of the Pope, and the Roman Catholic Church).  He still lives in Houston, Texas, and daily attempts to cope with and understand the disabilities and stigmas that are associated with his symptoms of dementia.

And just what were/are his heretical beliefs?

There is probably no such thing as Alzheimer’s disease.

There is an ongoing attempt to redefine/relabel Dementia as Alzheimer’s Disease.

Confusion and forgetting are probably a function of an over-stimulated, force fed, and overwhelmingly stressed brain, living way beyond its capacity to function as if it were 20 years od, living in a healthier environment, with fewer higher-level needs going unmet.

The National Alzheimer’s Association has in effect turned its staffing and budgeting backs on people living with the diagnosis of Dementia, probably of the Alzheimer’s, and to a lesser extent the backs of caregivers - in favor of an unholy alliance and crusade to create a world without Alzheimer’s.

This crusade demonizes the stigmas and myths of Alzheimer’s disease in an attempt to scare people into donating and urging their governments to spend enormous amounts of money funding research pretty much willy-nilly, lacking any overall plan other than the slogan is we need more money faster.  While only occasionally paying lip service to the “sufferers,” to those who are fading away as human beings, to all the folks living with all the symptoms/syndromes of dementia.

There is an ongoing attempt to redefine/relabel Dementia as Alzheimer’s Disease.

Thank heavens we do not hang people who do not believe as we do.  We do talk about them behind their backs.  We do try to isolate them and their heretical writings, newsletters, DVD’s and public speaking.  We do warn them to “tone it down,” to “go slowly and trust us.”

I do no fear being burned at the stake.  But like Giordino, I cannot understand why reasoning evidence are not used when considering what is and is not “good science.”  They are not used to making funding decisions regarding Alzheimer’s Research.  I cannot understand (accept?) why the moral imperative to support those who, for reasons not of their choosing, cannot take care of themselves is systemically ignored by those who claim to be leading the efforts to support those living with the sympotoms of each and all the different forms of dementia.

Unfortunately, for my sense of myself (ego) and I my thoughts, the conclusions I have drawn from my own life experience, reading, and listening to others especially about cure research are seen by some few as heretical.  Honestly, I want everyone to decide for themselves with the advice of some, but not needing the permissions of any, as to how they can best live their lives with the symptoms of dementia, living with someone who is living with these symptoms.

I am clearly on the downward slide/slide of Mount Dementia.  I have spoken to thousands and thousands.  Millions have read my writings.  I find myself repeating myself.  Have I run out of ideas?  Am I running out of the ability to understand my world and myself?  Am I simply deeper into the symptoms than I wish to think, but no one recognizes it because I repeated myself with questions that are unusual for anyone to repeat?  Does Ockham’s razor now explain formerly compl?????????????????????????????????????

I once met a person in an Alzheimer’s facility/community/neighborhood who every day at 4:00 would pack some clothes in a plastic bag, find the exit door hidden behind the rug, and loudly moan, “Home, I want to go home.”  She was ignored by staff and fellow residents.  I asked why no one talked to her.  Had anyone ever asked what was it about “home” that she missed the most?  I was told she had no home to go back to.  It had been torn down and replaced with a tattoo parlor.

So, I went back the next day and asked her what it was about her home that she missed.  ”The smell” she said first.  ”The way my bed felt when I laid down” she said second.  ”Being able to go to my refrigerator and make myself something to eat,” she continued.  ”Has anyone here tried to help you find these feelings here, these activities?” I asked.  ”No,” she replied and continued moaning, “I want to go home.”

I, too, would like to go home.  I would like to go back seven years ago when the president of the National Alzheimer’s Association told me “Not to worry, it’s gonna take a while to turn this big boat around.  Be patient,” he counseled.

I, too, would like to go home to the three years I volunteered to go speak with my U.S. Representative and Senator and telling them “If we don’t double the amount of research money this year, researchers will quit the field.”  Then, the second year I was told to say, “We can see light at the end of the tunnel, a cure is almost here, if only we had more money, now we could cure it earlier.”  And finally, the last year I could stand misleading my member of congress, “We have all the tools, we know what to do, we know ho to do it - all we lack is more money faster.”

It was a false sense of a home that never was real.  A home I created with my own mind following the blue-prints of others.  I didn’t think for myself, I didn’t decide for myself.  Now, I am disillusioned with others, and I do not trust myself.  I am tired of repeating myself.  What’s next?

Richard

Life can be awful.  Now it has gotten worse!

(Paraphrase of Woody Allen’s words and view of life)

On Watching and Hearing the Wisdom of the new Federal Committee to write a plan to plan to write a plan (now to write a draft of a plan to plan to write a plan) of how the Federal Government should lead/fund/create the efforts of a few to “create a world without Alzheimer’s on or just before or after January 1, 2025 …

I spent the last few days watching the self-anointed leaders of the Alzheimer’s crisis take a step backwards from their own promise (a plan to write a plan) and produce a framework of a plan to write a plan).  And then spend a day telling each other the framework is not enough.

Finally, I had to turn it off.  Enough was/is enough.  I commit to spend the remainder of my public life pointing out the fallacies, half-truths, myths, and stigmas these folks are creating and reinforcing out of one side of their mouths, while out of the other side comes their promise to undo what they persist in creating.  Of course, they still suck through a straw in the middle of their mouths your support, donations, and prayers.  And they can occasionally burp out a false hope or two every so often.  We cannot let these foxes be the spokespersons for us.  We cannot let them spend all our money on bench/cure research and relatively little on psychosocial research.  We cannot let them decide for us who should be the focus of their efforts and who can be ignored.  It’s time for the chickens stand up and crow, to walk around a pick/peck.  To be seen and heard.

Myths, half-truths, lies, and hoaxes are what we use as stand-ins to avoid thinking about specific individuals.  True, we demonize some, we lionize others.  We take pit on some, and worship others.  Yet everyone is someone, distinctly different and fundamentally alike, as you and I are, with each other.  But, it is easier, safer to think of classes of human beings - by sex, race ethnicity, disease groups, etc.

If we continue to buy the lie that Alzheimer’s Disease is sole cause of the public health crisis we are dooming more than another generation to feel “left out” of the dementia discussion, of the dementia research, of the dementia  support (such as it is) provided by organizations and governments.

This is wrong, wrong, wrong.

If we continue to believe the hoaxes, half-truths and myths promoted by organizations and researchers that all that is needed is 13 more years, lots and lots more money spent quicker, and a committee or two to watch over the assured progress we are dooming the rest of the dementia community (those with a diagnosis of probably Alzheimer’s) to a life much emptier of quality, meaning, and joy while we wait for the clouds to part and the cure pill to come tumbling  down on January 1, 2025.

This is wrong, wrong, wrong.

What are we gonna do for/about the increasingly bad state of life for 10 million Americans now living with some form of dementia, and 10 more millions of their care partners?  What are the  research priorities?  Finding answers to today’s human problems, or making up a date when there will no longer be tomorrow’s problems.

Let us stop watching this happen.  There is no plan, there is no science, and there is no growing consensus outside of a relatively small group of researchers, to find a cure on or near January 1, 2025.

Let us stand up and speak out.  These emperors of Alzheimer’s are not the leaders who will address the dementia public health crisis.  These emperors stand naked from their own inability to solve half of these in this 30-year-old crisis.  They stand naked together and lacking little to no support from their scientific colleagues most of whom admit we are not even close to understanding Alzheimer’s/Dementia.  Remember the finding of the NIH just last year?

Now comes a committee of the one eye (bench research) to proclaim “war on Alzheimer’s.”  They even tell us the date the war will be over, if only we sacrifice the quality of life of those with it, so we can concentrate our energy, donations, money, prayers of finding a cure pill so no one else will ever get it and we can finally after all who now have it die, live in a world without Alzheimer’s (but, of course still filled with the other fifty or so forms of dementia).

This is wrong, wrong, wrong.

They are declaring war, to the neglect of those who in whose name they want us to fight/donate.  This war, as most wars comes down to power, influence, fame, and money.  Though of pure motive in most of their minds and hearts, they have simply come to believe their own hoaxes, lies, half-truths, and stigmas.  These in their twisted minds justify the war.  They justify neglecting those in whose name the war is fraught, and write them off as collateral and relatively inexpensive casualties.  This war is about opening up nursing home beds, saving Medicare, reducing the federal deficit.  For these are the reasons/evidence they advance to justify the war.  And, yes, there are occasional warnings of “this could happen to you if you don’t do and support what we ask/need.  And who is the enemy?  What is the enemy?  Dementia?  Alzheimer’s Disease?  Stigmas and hoaxes?  The symptoms of the poor, suffering,soulless, dying twice barely human beings who are living with the symptoms?

Be careful not to wound them while you shoot at their symptoms.  Be careful no to demonize them with your neglect of their humanity, your weapons of war which may or may not slow down, reverse, eliminate, and/or destroy the symptoms - but then again the last 15 weapons (pills) we have developed have all failed, leaving broken hearts, broken half promises, crushed hopes in the minds and hearts of care partners and their partners.

Please, please - for your own sake, the sake of your family, and the rest of the world - stand up and speak out.  We are quickly falling further and further behind in the race they created to capture the hearts, minds, and money of politicians and citizens.  They first redefine the dementia crises with the words “The Alzheimer’s Crises.”  And then they convinced others with power that they are suddenly smart enough to this time for sure truly claim the cure is just 13 years away with absolute certainty.

We all whispered to each other about how wrong this was.  Wrote blogs, created petitions, made presentations to each other, fired off an occasional broad side via emails, and then we all went to bed.  They have stayed up all night running focus groups, reinforcing fears and stigmas, lobbying for 20 years for something that was “soon to come,” light at the end of the tunnel, supported by breakthroughs.  Claiming, now they know what to do, how to do it, they just lack a few pennies to support their efforts.

Now they spread false hopes, reinforce stigmas, state wishes as facts - all while under the all-knowing eyes of the Executive and Legislative branches of our government.

What is each of us going to do about this?  What are some of us going to do about this?  What should all of us do about this?

You decide.  I have

Richard

NAPA’s second official meeting announcement:

Second NAPA Advisory Panel Meeting is January 17 - 18, 2012

HHS 200 Independence Avenue SW, Room 800

Day One: 9:30a.m. to 4p.m.

Day Two: 9:00a.m. to 2:00p.m.

HHS will present an overview of the Draft National Plan to Address Alzheimer’s Disease.  The Advisory Council will discuss and, as appropriate, vote upon recommendations to the Secretary of HHS on the Draft National Plan to Address Alzheimer’s Disease.  The Advisory Council will also discuss how to engage stakeholders outside of the Federal Government in the writing and implementation of the National Plan.  The Advisory Council will allow an open public session for any attendee to address issues or topics that should be addressed in the National Plan.

HHS will present an overview of the Draft National Plan to Address Alzheimer’s Disease.  The Advisory Council will discuss and, as appropriate, vote upon recommendations to the Secretary of HHS on the Draft National Plan to Address Alzheimer’s Disease.   The Advisory Council will also discuss how to engage stakeholders outside of the Federal Government in the writing and implementation of the National Plan.  The Advisory Council will allow an open public session for any attendee to address issues or topics that should be addressed in the National Plan.

Public Input: Time is allocated on the agenda to hear public comments at the end of the meeting.  In lieu of oral comments, comments may be sent to NAPA@hhs.gov.

Formal written comments may also be submitted for the record to: Helen Lamont, Ph.D. HHS Office of the Assistant Secretary for Planning and Evaluation - Room 424E, Humphrey Building - 200 Independence Avenue, SW - Washington D.C.

Helen Lamont is a long-term care health analyst in the Department of Health and Human Services (formerly Health, Education, and Welfare).  Her email address is:

Helen.Lamont @ hhs.gov

(Thanks to the Alzheimer’s Foundation of America for releasing this information)

More Breaking News

The Committee has decided not to release their draft for a plan to draft a plan to deal with the public health crises created by Alzheimer’s Disease.  Instead, they will release a draft of a draft for a plant to draft a plan to deal with the public health crises created by Alzheimer’s Disease.  They don’t want to release their double draft until after the new FY2013 budget is published.  Since Congress put no monies nor promises, nor hints of more money on the table/agenda of this committee one could wonder aloud why they don’t just go ahead and ask for what is needed and see if anyone is listening?  Here are lots of links to catch up ho this committee’s thinking/work.  The committee was proposed five years ago, the law was signed Jan. 2011.  They met once in 2011.  And now they wait.  Is there a palpable sense of urgency which drives them to hasten the accomplishments they claim need to be accomplished ASAP?

You decide.  I have.

Richard

Just who are “they?”

Where are “they?”

Why are “they” doing this in my name, with my money?

How can I stop “them/it?”

All good questions I have asked myself repeatedly.  There are lots of “theys,” there are lots of “them” in our everyday conversations and thoughts.  Sometimes, when pondering my fate and current state of some one or two of my symstoms, I know “they” is not a person, “they” is really a singular or plural “it”.

Several years ago the National Institute decided their (actually our tax dollars) money could be better spent if they started to organize those researchers bitten by Alois Alzheimer’s Cure Beetle into lines of research.  One of those wavy lines (researchers are difficult folks to get to stand in line without trying to use their influence to butt in front of the researcher holding out his or her hand in front of him or her.)

We now have most of the major players in the legal drug cartels actually giving some of their profits to the governments in the hopes someone can create a market for products they have yet to invent.

One of those “lines” was titled The Neuroimaging Initiative.  After a year or two of buying and using overpriced imaging machines, the only recommendation or finding they could all agree on was “we need to be funded for another round of picture taking/scanning (and haven’t we all heard that finding before).”

Here are the group of for–profit and not-for-profit who supported that initiative by throwing some of their own money into the pot (dare I say it all came in one way or another from our pockets), in hopes that someone would discover a way to identify folks who, with some degree of medical certainty, would “come down” with some form of dementia, primarily of the guess what type (Begins with A and ends with S - and rhymes with ballsheimer’s).

The Alzheimer’s Disease Neuroimaging Initiative, was supported by the National Institute on Aging (NIA), the National Institute of Biomedical Imaging and Bioengineering (both part of the National Institutes of Health), Abbot, AstraZeneca AB, Bayer Schering Pharma AG,Bristol-Myers Squibb, Eisai Global Clinical Development, Elan Corporation, Genentech, GE Healthcare, GlaxoSmithKline, Innogenetics, Johnson and Johnson, Eli Lilly and Co., Medpace, Inc., Merck and CO., Inc., Novartis AG, Pfizer Inc., F. Hoffman-La Roche, Schering-Plough, Synarc, Inc., the National Alzheimer’s Association, Alzheimer’s Drug Discovery Foundation, with participation from the U.S. Foodn and Drug Admistration and the Dana Foundation.

It is quite understanding why all these form-profits would like to see a real breakthrough in early identification of AD and other related dementia - too numerous to mention at this time or apparently forever.  If someone else could convince people they are going to be disabled by the symptoms of dementia at some drop dead for sure moment in their res, isn’t it natural to assume those folks would line up to buy pills, treatments and advice on how to avoid, stretch out or even erase that day they would hear the words “So and so.  You have dementia probably of the so and so type.”

If we were able to image and predict dementia early enough we could try to sell Mom’s new vitamins, pills, treatments which would/might/perhaps avoid/postpone/eliminate the chance that their embryo would grow into someone living with the symptoms of dementia?

Of course, this rush to the brain photo machines at the end of the Mall ignores the fact that for 25 plus years, we have been spending time, effort, and money trying to find treatments, and so far the best we can offer people is “maybe, some people seem,” a dozen nude mice living in stage 1 - 11 of dementia, maybe/probably of he maybe/probably Alzheimer’s type benefited from early identification found some subjectively based (but they do have numbers attached to them) evidence of some form of help, some part of the time, but not everyone, every time.

But, back to the worst words Richard Nixon ever hear: “follow the money.”  We now have most of the major players in the legal drug cartels actually giving some of their profits to the governments in the hopes someone can create a market for products they have yet to invent.  And of course, the National Alzheimer’s Association acts as the cheerleader, and a relatively minor funder (when compared to the governments of the world, and BIG Pharma).  It’s small amount vs. the world, but it’s probably more than 50% of their gross income, and when you subtract 20% for fundraising and 10% of their gross donations they are passing along close to .70 out of every dollar you donate.

Could this 20+ year’s practice of funding as many research projects as possible lead to a “world without Alzheimer’s?”  Maybe, but they have no evidence to support their annual claims they are closer than ever, they have breakthroughs, now they know how to do it, they just lack the funds.  Based on today and the past 7,300 days (that adds up to 20 years) maybe seems and overstatement.  An overstatement upon which so many false hopes have been created in the broken hearts of millions of caregivers, and the broken minds of millions who have died before they ever had a chance to take one baby step towards “the world without Alzheimer’s.”

That is real.  I know that for sure!  It is not that it might or might not happen.  It has, it is, and it will happen.  Andhow are they responding to this situation - trying harder rather than different.

Of course, as always, you decide for yourself.

Richard

Posted on November 23, 2011 by Allen Powers, M.D.:

“I was speaking in Ohio earlier this month and had an experience that reinforced an important lesson for me.  I was giving a community talk on dementia and a TV reporter came to interview me before the talk.  We put on the microphone and launched into a 10-minute conversation on camera.  She asked a lot of good questions, and then as my message became clearer to her, she threw me a curveball.

She said, “A man disappeared from his house in our community a couple days ago and they haven’t found him yet.  Do you have any insights about problems like this?”

In the split second before I opened my mouth, three thoughts flashed into my head: (1) You don’t know the details, (2) Don’t blame anyone for not watching him, and (3) But you can’t advocate locking everyone up, either.

I just began to speak from the heart of my approach and my mind went to a very different place.

I said, “Often, when we acquire the label of ‘dementia’, we are seen as incapable of choice, and so this is taken away from us very quickly.  I think that there are times, whether it is in a nursing home or one’s own home, when a person feels so disempowered that they have a need to exit and try to find a place where they can exert some choice and control once again.  I think that if we can begin to partner with people in their care right from the start, often there be less likelihood of such a catastrophic response.

I went on to give my talk, but in the back of my mind was the question, “If that comment is broadcast, especially out of context of the other questions, how many ways can it blow up in my face?”

The next day I spoke to professional care partners.  One of the organizers mentioned to me that he heard on the news that the gentleman had been located, and that he was safe.  My host said, “It turns out that the guy took off because they were about to hold a court hearing to assign guardianship to a family member.”

Powerful stuff, choice.”

My response:

Hello,

I too have drifted away from where everyone left me a time, two, three, or four.  I get distracted from the present moment and something seemingly important pops into my mind, and I am off to do it, find it, etc.

Dementia thickens the fog, and muddies the water.

At least that is what I tell folks who “find” me: I am doing this or that.  I always have a purpose, sometimes it takes me a moment or two to find it and say it.  A couple months ago I wandered off and two of my grandchildren found me, and I did not recognize them, at all.  Reconsidering the moment it is very embarrassing to me, disappointing to me that I did not remember my own granddaughter’s names or faces - it occurred right in front of their faces.  About a half hour later, I “came back fully into the present moment” and started to piece together what had happened.  This was a traumatic, guilt producing moment for my family, each of them thought I was with another family member.

I think Al’s insight is partially part of the motivation most of the time. It is complicated - that is, it is difficult for me and others to “figure out.”  It’s such a public event everyone has to deal with it within themselves.  I know I have lost control of driving, money, many choices, and I know I am being watched by family and friends most of the time to make sure I do not do anything “weird”.  I recall when I stopped driving, the first time I went into a grocery store after being home for several weeks.  It felt amazing to me when my spouse went down one aisle, and I went down another.   There I was free! If only just for a moment.

Once my daughter in law and I had taken my wife to the hospital, and as Linda was groggy and my daughter in law left the room, a nurse came in and started to ask me questions about Linda.  I felt free, but for a brief moment when my daughter in law returned and took over answering the questions.  These seem like minor events, but I can still recall the feeling of being free again.

Free choice is both, at the same time, a philosophical illusion and a practical reality most of the time.  We are driven by impulses over which we have theoretical control.  Most always, we can choose between fight and flight, between doing it or not doing it.  Whatever it happens to be.  When the ultimate decider, our hippocampus, when the entire brain is inconsistent in what it recalls and how it reacts to internal and external stimulus, dementia is frequently the root cause.  And it, too, is inconsistent as to how it inter-reacts with the brain.  Like life and especially love - it is truly complicated.  Free choice is theoretically always free and ours to use.  The reality is, it is neither free nor the choice as we see and feel it.

The Power to Choose and for them to be able to understand, state, and explain how and why you chose that course of action is murky even when you don’t have dementia.  Dementia thickens the fog, and muddies the water.  Free choice is as powerful as it is bewildering to understand and sometimes control.

Richard

Somebody else, with more clout than we have earned in the last twenty five years has got to do these things, and the National Alzheimer’s apparently believes it ought to be the Federal Government.

Previously, I started through the 10 “must haves” the National Alzheimer’s Association demanded in a 48-page report to the Federal committee.  Below are the 10 demands the Association made/suggested/offered to the committee to adopt.  I know there must have been more than 10 kinds of suggestions, but in keeping with God’s tradition, and growing out of the movie The 10 Commandments, they have limited their “must haves” to 10.  I urge you to at least skim, if not read the Association’s 48-page report that includes these 10 demands/suggestions.

These are the 10 issues they are telling the committee to “fix:”

1. A lack of public awareness
2. Insufficient research funding
3. Difficulties with diagnosis
4. Poor dementia care
5. Inadequate treatments
6. Specific challenges facing diverse communities
7. Specific challenges facing those with younger-onset Alzheimer’s
8. Unprepared caregivers
9. Ill-equipped communities
10. Mounting costs”

This month, I want to address the other five demands the Association makes for this committee.

I would not work for them.

The Board of Directors should all resign.

Richard

“The single most biggest problem with communication is the illusion that it has taken place.” - G.B. Shaw

Do as we say, not as we have done!

The National Alzheimer’s Association comes out of its own closet filled with failures, swinging at the Federal Government to what they want done, now!  And spend lots more money doing it.  And, by the way, they are standing around to bask and raise more funds through any of the Government’s success.

From the website of the National Alzheimer’s and Other Related Dementia site:

“Alzheimer’s from the Frontlines: Challenges a National Alzheimer’s Plan Must Address is a collective effort by thousands of Americans to share the real and unrelenting struggles they face dealing with the disease that must be addressed in the National Alzheimer’s Plan now being created through the implementation of the National Alzheimer’s Project Act (NAPA).

Building on a commitment to provide a platform for those directly affected by Alzheimer’s, the Alzheimer’s Association and its more than 70 Chapters nationwide hosted over 130 public input sessions, a NAPA website, and a national Telephone Town Hall to learn what Americans need in a bold and transformational plan.  From their input, 10 major challenges emerged.”

Many of you are already aware of the research predisposed National Committee, mandated by a law signed by our President over a year ago, and now promising a first draft by the end of this year whose function is write a plan so the agencies of the Federal Government, and the Congress can write their own plan of how the Federal Government should respond to the public health crises caused by the epidemic of dementia sweeping through every country on the planet - oops, make that just ‘Alzheimer’s Disease’ (one form of dementia).

Apparently not trusting these 30 wise conflicting-interest citizens to figure it out together, the National Alzheimer’s Association, in your name, has issued a 48 page report on what should be done - what are the issues that should be addressed, who should address them, how much money should be spent (no mention of where all this new money should come from other than reducing fat, eliminating needless duplication, trying harder to borrow from the people they sere, rip it out of the hands of other Federal departments, or perhaps hold a National Bake Sale - half of which would go to the defense department because of the draconian cuts in the offing, and half would go in the pockets of the small community of researchers focusing on curing Alzheimer’s Disease.

From my perspective, I’m not sure what entitles them to speak for all of us.  Considering they have devoted the past twenty years to figuring this all out and making a National difference, they now claim they really know what to do based on a series of public meetings they held.

Not that this wasn’t a good thing - it’s just that it took them 20 years to ask some of us, and they certainly didn’t ask enough people living with the symptoms of dementia - at least in any deeply, considered way.  To the best of my knowledge no one with dementia works in the National office nor volunteers there.  Contact with their early on-set advisory most often takes place through a conference call.  Not too strangely enough, do they want the committee to adopt their issues, they want this committee and ultimately the Federal Government to assume their own failed responsibilities over the past 20 years.

The report looks nice, is clear, though of course it lacks any details.  It’s as if the staff of the Association sat around a table and each had to write the 10 biggest failures of the organization over the past 20 years.  Now it’s time to let the government solve, what they have been unwilling/unable/had little clue what to do other than more and more research and some support for some caregivers for more than the past twenty years.  Of the more than 1,000 people with dementia and 14,000 they counted as participating in their feedback sessions, they found 20 or so whose comments fit exactly what they want the Association has been trying for the past twenty years to accomplish by themselves.  Of course, there is no word of criticism, alternative ideas, suggestions of other “must do’s”.

I wrote, I called, others I know for sure wrote and called and spoke up, but in Association’s all-hearing ears other opinions other than their preexisting go unrecognized.  Where are their alternative recommendations (not necessarily mine, but here must have been more than the round number 10 about which people spoke up, and about which may have reflected something less than positive on the all-knowing association.

“Early on, the CEO of the Association told me his door was always open.  I don’t know why he keeps it open.  He doesn’t listen and/or understand what people with dementia are telling him.”

So, out comes their report.  As far as I know, no one else felt it necessary to publish a 48 page wish list/demand.  Please, check it out for yourself.  Write to the CEO of the National Alzheimer’s Association, HarryJohns@alz.org and tell him your opinion as to how good a listener and leader he has been for the past several years.  Mind you, all that they have or haven’t done over twenty years has been a waste of time.  BUT, when the core issues of accurately advocating, planning, educating all of us about dementia they have fallen far, far short; embroiled for years and years with conflicts with their own local chapters, issues which the National office has created for themselves and for their Chapters.  In summary, and even though you didn’t ask, I see this as an attempt on their part to pass along responsibility for doing some things that they have been unable to accomplish for 20+ years, try harder by spending more money faster to find a cure, and continuing to misunderstand and mostly ignore the real needs of the real life folks living with the symptoms of dementia.

These are the ten “must address” issues they presented to the committee, via the Internet and press releases.

1. A lack of public awareness
2. Insufficient research funding
3. Difficulties with diagnosis
4. Poor dementia care
5. Inadequate treatments
6. Specific challenges facing diverse communities
7. Specific challenges facing those with younger-onset Alzheimer’s
8. Unprepared caregivers
9. Ill-equipped communities
10. Mounting costs

My response:

1. A lack of public awareness - The Association has spent 20+ years attempt to achieve public awareness.  Why should they not dump it on the Federal Government?  Every disorder, disease, disability, deserves to be correctly understood by the general public, but should this be a major priority of Washington?
2. Insufficient research funding- Ah-ha.  Honestly, I thought they would have made this number one!  Again, after 20 years of spending your donations, has the national organization been in any way successful in bringing us to a breakthrough?  In fact, they have championed for years and years, a theory of the cause of Alzheimer’s Disease that continues to be unsupported by research.
3. Difficulties with diagnosis.  Another Ah-ha.  In he past 20 years, are their two physicians who have diagnosed exactly alike?  Can you truly diagnose a condition that seems to share the same label, but no physician can predict for you how fast your symptoms will progress, exactly what symptoms you will exhibit and how you will cope with them.  It is no wonder no two physicians can come up with the same early-stage diagnosis, but even the bag claims only to know if or if not you have it (some claim the same bag tells you if you have it), not what it’s course will be.  Other than of course you will die, but then again so will the person holding the bag!  Every physician can recognize the symptoms of dementia - if you are late enough into it that even your dog knows something is wrong.  Every physician can label you, but sit with her/him for an hour or so, and let them tell you exactly what that means to you and your family, what treatments are available, why is it we haven’t discovered a new drug claiming to have some effect (not exactly sure what from person to person), on some people (not exactly sure who those people are or if you will be one of the 30 - 60 claiming a time limited effect at all.  Pretending there is only one form or strain of Alzheimer’s is a belief held by relatively few, especially if their livelihood, association, and research depends on there only being one form.  However, it is less complicated with the fund raising when one term defines one disease.
4. Poor dementia care - They got this right.  It is a nationwide problem, but is the Federal Government the answer?  States can’t even get around to inspecting Memory Units more than once or twice a year.  Poor care is caused by a misunderstanding of who people living with this disability are, staff ratios that are an absolute barrier to real person centered care in every nursing home in America, and did I mention, most sites, most manager, most administrators, most investors have for various reasons differing appreciations for the human needs of those for which they provide services.
5. Inadequate treatments - this one is tricky.  If treatments means more pills, then yes there is inadequate treatments available.  If treatments means socialceuticals, the answer is no.  We just need the will, the courage, the understanding to provide humanizing treatments for those living with the symptoms of dementia.  There is a relatively new push for early diagnosis.  ’If the symptoms can be identified earlier, the we can DEVELOP treatments earlier,’ runs the oft-repeated argument.  So, come on in early and often so we can have large subject pools to develop the new drugs.  Ignore our lack of understanding of you and the cause and progression of your disability.  Trust us, because once enough of you early-stagers come forward, then surely we will think of something to do.  Of course, in the meantime, you will be faced with the stigmas of Alzheimer’s which we ourselves mention in many of your fund raising letters!  There is already a movement to promote non-pharmacological interventions (I call them socialceuticals), but the results of these ‘treatments’ have not awoken the rest of the staff who didn’t come to the drum circle.  Everyone returns to their rooms to await Bingo!

“The Association is and has been doing some good things for people with dementia … Repeating over and over again how awful Alzheimer’s Disease is, again is not one of them.”

Richard - with motivation provided by Harry Johns

A slow growing strategy used by some therapists to help folks live in the moment; to help caregivers appreciate the mindfulness of the person for whom they are caring.  It is a blending of philosophy, psychology, and biology.  I reprint part of this article, not because I am mentioned in it twice, but because it is a term currently thrown out to folks who don’t know it’s history, the philosophy, and practices associated with mindfulness.

My layperson’s take on it is: practice living fully in the moment.  Be aware of how those around you are mindful of the moment.  The more we can appreciate and understand the mind full state of each other at any given moment, the easier it will be for us to empathize with each other.

Here is a part of an article I found posted on my friend, Dr. Al Powers’ blog.  It was written by Marguerite Manteau-Rao, www.twitter.com/MindDeep:

“The Presence-based approach to Alzheimer’s care focuses on cultivating one’s innate ability to be present in the moment, otherwise known as mindfulness, along with a wise understanding of the reality of the person with memory challenges, and developing a mindful care community.  It aims for no less than a radical shift in the care partners’ attitude.  It also allows care partners to meet the forgetful ones in their present-moment reality, which is where they most successfully engage.

The Presence approach draws its legitimacy from several sources.  First, is Jon Kabat-Zinn’s mindfulness-based stress reduction (MBSR) training, a clinically proven way to reduce stress in the general population, through the practice of mindfulness.  Second, is the culture change movement in elder care, most particularly the work of pioneers such as Christine Bryden, Richard Taylor, Olivia Ames Hoblitzelle, Nancy Pearce, Bill Thomas, Allen Power and Nader Shabahangi.

“The more we can appreciate and understand the mind full state of each other at any given moment, the easier it will be for us to empathize with each other.”

All emphasize the need to be present for the entire reality of the person, and also focusing on the many gifts from forgetful states.  Third, is the Zen Hospice model that emphasizes the importance of a mindful care community and environment to sustain one’s mindful care practice.  There is qualitative evidence that such an approach can lead to dramatic increases in well-being, both for the care partner and the person with memory care needs.

For now, because Presence training is not yet available to the general public, here are three steps that you can take on your own:

1. Start a mindfulness practice, either joining an MBSR class of taking instructions in Vipassana meditation.  If there’s no instructor in your local area, you can learn to practice online.
2. Become wise about the care needs from your loved one, and read the following books:
   1. 1. “Dementia Beyond Drugs,” by Dr. Allen Power, geriatrician.
      2. “Alzheimer’s From the Inside Out,” by Richard Taylor, a psychologist living with Alzheimer’s.
      3. “10,000 Joys and 10,000 Sorrows,” by Olivia Ames Hoblitzelle, wife and mindful care partner.
      4. “Inside Alzheimer’s,” by Nancy Pearce, geriatric social worker.

With other family members, friends and care partners, start a mindful care community.  Invite them to train in a mindfulness practice with you.  Get them to read the same books.  Sit and meditate together, and share your joys and sorrows. “

Richard