While I was at the Annual Conference of the world’s Alzheimer’s associations, I made a new friend; a dynamic, witty, insightful Southern Australian who goes by the name of Kate Swaffer.  Her business card simply says, “Advocate.”

Here is a sample posting from her blog site.  You might enjoy subscribing to it.

“… confusing my deodorant for my hairspray which merely gives me sticky hair and funny smelling armpits….”

New post on Kate Swaffer - Creating Life with Words:

“Talking and writing about the symptoms of dementia has been helpful.  For me, a phenomenological approach to this illness has been another key to staying positive; that is, studying the nature of things as they are, and investigating and describing my conscious experience in all its varieties without reference to the question of whether what is experienced is objectively real.  My writing and presenting has allowed me to do this, not only by pushing me to think about it, but to express it in a way that has clarity and is meaningful, and allows me to share the experience, and for others to learn from it.  Wondering how to put on my underpants and thermals (!) or how to do up the laces on my shoes, struggling with handwriting, wondering when to laugh or cry, confusing my deodorant for my hairspray which merely gives me sticky hair and funny smelling armpits; these are all a significant pain in the arse and are happening more often, causing a renewed fear of the future.  They are the sorts of things I thought might occur when I was 80, not at the age of 53.  It also seemed incredulous to me that I would need to justify the diagnosis of dementia, and that living with it  well is not seen as more positive.  If I had sustained brain injury through a car accident, and was doing really well with rehabilitation, my success would be applauded and explored, rather than the extent of my injury questioned.  And, if my success was significantly greather than others with a similar brain injury, I’m pretty sure others would want to know what I was doing differently.  In hindsight, perhaps this is another reason I decided to present My Unseen Disappearing World at the Fringe.”

Kate

I wholeheartedly agree with Kate - for your truly (me, Richard Taylor) talking and writing about the symptoms of dementia has been more than helpful.  It led me to a new sense of purpose in my life.  It is, I believe, the reason I have thus far been as relatively successful as I am, most of the time, at covering up my symptoms.  It gives me energy, focus, challenges, and a strong reason for opening my eyes and getting out of bed every morning.  Perhaps you should try it?

Richard

Hello,

My name is Richard Taylor and I live in the United States of America in Houston, Texas.  I have been living with the words, “Richard, you have dementia, probably of the Alzheimer’s type,” ringing in my ears for almost 10 yeas now.  I believe I was diagnosed unusually early in the progression of my symptoms.  I believe the fact that I am overeducated, purchased the book ‘21 Days to a Greater Vocabulary’ when I was in the eighth grade, an extrovert of sometimes extreme proportions, and having been engaged on a daily basis with many other human beings in my family, city, state, world and most importantly and quite by accident the publication of my book ‘Alzheimer’s from the Inside Out’ which created a brand new purpose for my life.  All these factors have contributed to my ability to stand up here and speak out, to be an advocate, to comment from the perspective of a person living with Alzheimer’s about what it is like how it feels what I think about how others treat me and how I think of myself - all these factors have led me to the moment of me standing here today talking to you.  My book was published on December 31, 2006 and so for the past six years I have been on what amounts to a crusade to stand up and speak out.  The combination of all these factors has made me who I am today.

I will never, ever become a shell of myself.  I will never die twice.  I will never lose my soul.

What has not changed about me, is that upon hearing the words, “Richard, you have dementia, probably of the Alzheimer’s type,” is the fact that I am a father, I am a grandfather, I am a husband, I am an active member of my new community of kindred spirits, and I am the product of the family and community created by my parents Jeanette and Maurice Taylor.  I am still a member of the human race.  I am one of 6 billion people on this planet who were born with the same set of human needs.

As my symptoms increase, my needs of a human being do not lessen.  As I fade away from your perceptions of reality why do you believe I am fading away from my need to understand and control my own reality, what is going on around me?  As my capacity to verbally interact with you diminishes why do you act as if my need to be engaged with those I care for is diminishing.  I have a disability, and that disability is expressing itself through the symptoms of my dementia.  I still need to be a part of a community; I still need to give myself to others.  I still need to laugh.  I still need to experience joy and peace.  I still need to feel good about myself.  I still need to feel that I have a reason every morning to open my eyes.  I need a purpose to my life.

I will never, ever become a shell of myself.  I will never die twice.  I will never lose my soul.  I am not in my own heart and mind in the midst of the long goodbye.  You tell me this verbally and non-verbally every day.  As you wake up each morning, are you one step closer to your own death?  Of course you are; we all are.  Do you wake up in the morning, hug the person you are lying next to, and look sadly in his or her eyes and say goodbye to them or good morning to them?   We all started dying the day we were born.  Just because someone in a white coat said to me, “Richard you have dementia,” did not signal the beginning of my personal long goodbye.  You, too, are going to die.  You and I are not any different in that sense.  It’s just that I know that if I do not die from something else other than the direct causes of the symptoms of dementia, I will die indirectly as a cause of those symptoms.

It is true, I do forget more than people my age do.  Not forgetting causes me to be more confused than most folks my age.  That confusion is exacerbated by my slipping cognitive abilities.  I used to say they were dying, but they are not.  They are still there.  I just do not have the control over them.

Now, if this syndrome that you label with the words ‘Alzheimer’s disease’ is truly a disease, or if it is a combination of many factors, I do not know.  No one know, and perhaps will never know the moment when I did not have Alzheimer’s and one millisecond later I did.  I do know for sure that I am Richard.  And that about sums it up.  Oh yes, I forgot to mention I have dementia … probably of the Alzheimer’s type.

Thank you,

Richard

I believe death is a part of life, a part, all-be-it the last part of living.  I know more about being alive, how I feel, and what I need than I know about death, what I need when I am dead, or even very near death.  I do know I need to be alive, and I would hope others around me would know and act as if I were alive, not dead, nor even near death.

Yes, I think there is some value in thinking about and filling out end of life wishes and legal forms.  For myself, I chose five wishes as a template.  A humanely written fill-in-the-blanks document as to how I want to be treated near my own death.  There are a few things I need to clarify, a few I need to bring satisfactory closure to, and a few things I would like to eat and drink, but this is to be used only if I don’t have the ability to fill in the blanks at that time.  I want to be asked, “What should we all do next?”   I want to be told, “You are approaching the moment of your death, are there different enabling behaviors we can offer you now, that you might not of wanted prior to this moment?  Like for instance ….”  For heaven’s sake, if I can’t or don’t respond, then find the people who have taken care of me, who understand my humanity, who can tell you the needs I most often seem to enjoy being met and put those into my care plan and see that they are met.

But, I digress and am slightly off track.

I will address each of the five wishes from the perspective of being alive, and not nearing the end of my life.  I think this is a much more practical, positive, and useful way to address end of life issues - is by addressing ongoing life issues.

Wish 1: The Person I Want to Make Care Decisions for Me When I Can’t.

This section is an assignment of a health care agent (also called proxy, surrogate, representative, or health care power of attorney).  This person makes medical decisions on my behalf if I am unable to speak for myself.

And what about those times when sometimes I can make those decisions based upon a sound understanding and recollection of the facts, while other times they are based upon an unsound and misunderstood recollection of the facts.  Those times when I need enabling support to understand the situation before I reach a decision.  Who will help me then?  Who is trained in understanding the process rather than simply judging different conclusions?  Who is trained in active listening, who is an acknolwedged empathetic person especially with other folks living with my symptoms?  I need less of a proxy, less of an attorney, and more of a best friend.

Wish 2: The Kind of Medical Treatment I want or Don’t Want

This section is a living will - a definition of what life support treatment means to me, and when I would and would not want it.

And what about those times wen I need psychosocial support and not more medications or medical treatments?  Who will help me then?  Who is trained in understanding the process of helping others to make up their own minds?  As is now, my caregiver or someone in a white coat says, “I know better than you what is best for you.”  Who will lead the non-pharmacological treatments/therapies efforts?  I need to talk to them, now, and at least once a month until my name is called on the roll up yonder.

Wish 3: How Comfortable I Want to Be

This section addresses matters of comfort care - what type of pain management I would like, personal grooming and bathing instructions, and whether I wold like to know about options for hospice care.

And what about those times, when it is not a question of pain management, it is a question of quality of life management?  Who will enable me to be responsible for myself?  Who has been trained, not just in and how to give a person-centered-care but enabling someone else to give themselves a bath with their enabling support.

Wish 4: How I Want People to Treat Me

This section speaks to personal matters, such as whether I would like to be at home, whether I would like someone to pray at my bedside, among others.

And what about those times when I am no longer living in my own home, a decision based no upon my wishes, but upon others’ conveniences and wishes, what kind of neighbors and friends do I need and want, what is it I want to do with my hands, my heart and my mind each day to make me feel good about myself that I have a sense of purpose to my life?  Who will continually help and reassess with me how I can be the senior partner with others when it comes time to making decisions, personal decisions as to the details of my life and how I need and want to live it, and how I want and need it to end?

Wish 5: What I Want My Loved Ones to Know

This section deals with matters of forgiveness, how I wish to be remembered and fianal wishes regarding funeral or memorial plans.

And what do I want my loved ones to know before I die?  What are open issues in my life that I wold like to resolve before I die?  Who can enable me to resolve these issues?  Why must I wait until the end to try to die in peace, why don’ I try to live in peace?

No, I realize these do not answer all the wishes or questions of every person living with the symptoms of dementia.  But, my point is, why wait until just before we die to live a full life?  Why shouldn’t palliative care be the treatment model that supports us years before we move into a hospice?  In my mind, Palliative care is really life care.

Please check out www.agingwithdignity.org for more information, which supports 25 different languages.

Richard

Hello,

My name is Richard Taylor and I live with my favorite wife Linda in the United States of America.  Nine years ago, a man in a white coat told me, “Richard, you have dementia, probably of the Alzheimer’s type.”  Twenty minutes later I found myself crying, hysterically.  I didn’t know why, I didn’t know anything about dementia or Alzheimer’s disease.  I just knew it was a terrible thing to have and I was going to die, sooner rather than later.  Unbeknownst to me, the stigmas, myths, and hoaxes attached to the words ‘dementia’ and ‘Alzheimer’s’ had stirred up in me an emotional response to lots and lots of deeply held fears of losing control of myself, of dying, of suffering, of fading away from those I loved and not being able to do anything about it except cry and feel lonely.

The stigmas of those words had been implanted/ingrained in me.  Just like in the movie ‘The Body Snatchers’, someone or thing put a pod under my bed and it stole my mind wile I was sleeping.  I was destined to be a Zombie, a living but dead human being.  Oh my God, no wonder I cried uncontrollably for three weeks straight.

It’s too kind to call the psychosocial beliefs of dementia, myths.  Let’s call them what they are: Stigmas based on hoaxes and frauds.  The father of the sociological study of stigmas was Erving Goffman.  He believed social stigmas were the severe disapproval of a person on the grounds of characteristics that distinguish them from other members of society.  Stigmas became attached to a person who differed from social or cultural norms.  Talking and mumbling to yourself out loud, answering yourself, wandering around seemingly without purpose.  This behavior deserved some abnormal label.

The process of stigmatization of folks living with and showing the symptoms of one or more of the 50 forms of dementia didn’t become apparent until just after the French Revolution.  Once we discovered that disease and, most importantly infections, were not caused by an imbalance of humors, and bloodletting would not cure them.  George Washington actually died as the doctors of his day bled him to death, because his wooden dentures had caused a serious infection in his mouth.  Once the Europeans began to teach us all about the true causes of infections, we began to cure infections and people immediately began living longer lives.

The word ‘dementia’ is of French origin, and it originally meant, quite literally, crazy.  And weren’t crazy people sick in their heads, weren’t they different, weren’t they less predictable in their behaviors, weren’t they dangerous to an orderly society, and a proper family?

Wham!  The stigmas started: be afraid of dementia in yourself and in others.  ”People living and exhibiting some symptoms of dementia are losing their minds, they are going nuts, they are fading away as a person - as a human being.  They are in the midst of the long good bye.  They will die twice.  They weill suffer.  They will lose their soul.

The hoaxes and frauds are the cause - the stigmas are the effect.

No wonder I was crying.  No wonder we get seriously depressed and/or become anxious.

The hoaxes began.  The difference between a hoax and a fraud is that a hoax has no intention of defrauding someone.  A fraud is, in criminal law, an intentional deception made for personal gain or to damage another individual.  Fraud is a crime, and a civil law violation.  Defrauding people or entities of money or valuables is a common purpose of fraud, but there have also been fraudulent “discoveries.”  For example, in science, discoveries used to gain prestige rather than immediate monetary gain.

A hoax also involves deception, but without the intention of gain or of damaging or depriving someone of something they own.  Yah!

The hoaxes and frauds are the cause - the stigmas are the effect.

The Greek origin of the word ’stigma’ referred to a type of marking or tattoo that was cut or burned into the skin of criminals, slaves, or traitors in order to visibly identify them as blemished or morally polluted persons.  These individuals were to be avoided or shunned, particularly in public places.  You couldn’t hide your symptoms of being a criminal, slave, or a morally polluted person, because it was literally tattooed on your forehead or arm.

Today, we have replaced a tattoo with the medical diagnosis of dementia, probably of this or that type.  Cover up our condition as well as we may, and folks still whisper to each other, “You know, Richard has Alzheimer’s disease.” A noted neurologist once answered my wife’s question as to when she should bring me back to see him.   His words were, “When he pulls down his pants and pees in the middle of the front room, bring him in.”  Many doctors, well intended but misinformed, now pass along stigma inducing claims without knowing they are doing so. “Watch Richard, he may wander.”  Now, I have wandered more than once.  But, it wasn’t wandering to me.  That was your word.  Some idea, some need became apparent to me and I acted on it.  It didn’t make sense to you, so I was wandering.  ”Keep an eye on Richard, he may become violent.”  Well, then again, I may stay nonviolent.  Just mentioning the possibility of violence without putting it in a context, creates a hoax.

“You know, Richard has Alzheimer’s disease.”

Ultimately these stigmas may be true sometimes. And many times, ideas as well as expectations you have about my specific behaviors are the reasons you advance to take away my liberties one at a time until you incarcerate me against my will in an overpriced hotel filled with employees who will hug me a lot.

These stigmas support your claims to access and impose social and economic power over me.  Are these stigmas examples of my abhorrent, unpredictable, dangerous behaviors you gave the lawyer or judge exceptions to the rules and conclusions?  Or, do they prove the rules and conclusions of stigmas?  You two get to decide.

Don’t ask me, I don’t know what I am talking about and/or I won’t remember in an hour what I just said.  Enough said!

Most of these stigmas, most of these hoaxes are promoted by family and professionals who really care about us.  It hurts them to have to think this or that about me.  Then, why do they think these ways?  Why do they accept the depersonalization that comes with stigmas?  Why do they rush out to find out just what Stage 2 means and then look for it in my behaviors?  Well, someone in a white coat, someone with more initials after their name than mine, said so.  And where did those folks learn “the sad truths” of dementia that apply to most everyone, in most every situation?  Why, from folks who don’t have dementia, of course.

Those who are stereotyped often start to act in ways that their stigmatisers expect of them.

Is there any wonder why these hoaxes continue?  Who represents people with dementia in the media, in the fundraising letters from research organizations and associations, in ads for this or that Alzheimer’s drugs?  Someone like those of us speaking out, admittedly struggling with our slipping memories and cognitive abilities?  Or someone who has thrown in the the towel?  Or someone who others threw in the towel prematurely on their behalf?  There are as many faces of dementia as there are people living with dementia.  If you know  one person with dementia, you know one person’s worth of the total knowledge of dementia.  And, who knows everyone with dementia?  Your doctor, social worker, friends?  Of course not.  We are branded and sorted by our diagnosis.  Staged by what behaviors our caregivers can remember and report to the doctor.  Diagnosed b the results of tests which are based on an understanding of what is being asked - as determined by some testing company and their bevy of PhD’s.  Non of whom, by the way, have exhibited the symptoms of dementia.

Stigmas do affect the behavior of those who are stigmatized.  Those who are stereotyped often start to act in ways that their stigmatisers expect of them.  It not only changes their behavior, but it also shapes their emotions and beliefs.  In fact, stimgas do greatly drive the stress and sadness in carepartners.

To push this exploration of stigmas one more level, and to become the bearer of some uncomfortable conclusions about folks and organizations with whom most of you feel very comfortable with now.  I want to talk about fraud, deliberate misrepresentations about research, deliberate misrepresentations about what it is like to live with dementia.  When someone signs off on a press release that says ‘New Study Finds Blah Blah Blah May Lead to a Cure of Dementia.’  What do they intend for the reader to take away from the article - the lead sentence, or the blah blah blah?  When you find out later on in the press release that nude mice, rats, as well as an assortment of fruit flies were the ones that claimed “Breakthrough in dementia research”, is that what you remember, or is it the claim of a breakthrough what you remember?  Do you rush to write a check to create a world without Alzheimer’s in the name of these poor mice, rats, and fruit flies living with dementia.  Or, do you run and write a check to cure the awful disease in your family member, or perhaps even in yourself in the future.

Are we to be the new collateral damage of the new war on Alzheimer’s?

Focus groups tell fundraisers how to scare people into donating, how to create public support for more governmental financial support.  What words should they use, what order should they be in?  And what if an unintentional result of demonizing the symptoms of dementia contributes to diminishing the quality of the lives of folks living with the symptoms?  Well, so be it.  Maybe they will come around next month and put new human faces on dementia.  Maybe they won’t.

This is what I believe is happening right now to a lesser or greater extent around the world.  Drug companies, researchers, people who know better, don’t act better.  Some hint at and then let you draw your own inaccurate conclusions.  Some ignore inconvenient truths in favor of exaggerated convenient truth.  They seek to scare us into supporting them, and by supporting them we inadvertently, unintentionally demonize/stigmatize the lives of those living with the symptoms of dementia.  Are we to be the new collateral damage of the new war on Alzheimer’s?  I hope not, but is is only the weakest of hope, what ought to be rather than what realistically will be.  When confronted, these transparently self-serving individuals speak of not wanting to dash the hopes of carepartners that a cure will be found for their loved ones.  When they themselves are the purveyors of false hopes.  Good intentions are stated and relied upon by everyone who ever started a war.  Every war’s innocent victims are written off as collateral, and unwanted but inevitable consequences of the most well intended wars.  And don’t they describe them all in the minds of those who started them.  Why do we, at best, watch and, at worst, promote the demonization, the stigmatization of older human beings when their brains grow older, function less well, when they become disabled by their symptoms of dementia?  I suspect it is all part of cultural ageism that permeates many of the cultures represented in this room.  Must we wait for a perfect world, before we confront the stigmas of dementia?

There just is no us and them when it comes to dementia.  Fundamentally, there is always, and in one sens, only you and I.  Each the same, each different.  Each changing who we are, how fast we change with each passing day.  We are different in some ways - carepartners and the people for who they are caring.  But, fundamentally, we will always be the same.  Human beings with the same needs and wants we were born with.  The needs and wants will be with us until about two minutes after we draw our last breath.  No disease, no condition, no stigmas, no hoaxes, no lies will can ever change that.  There is no need to catalog us as does the medical profession.  Even they admit to variance between human beings.  It’s just that the DSM 4R or the ICD 9 are made up of static labels permanently printed on a page/  They don’t change from reader to reader.  The reader, the human being adjusts to them, not the other way around.

I ask each of you today, who see us standing up and speaking out, and thinks, “He doesn’t have dementia;She doesn’t have Alzheimer’s disease; they don’t think like it,” to think and act differently to see our basic humanity as a constant, resistant to labels and words.  I ask you to stand up and speak out when you hear, see, smell, or sense stigmas entering into coversations about people living with a few of the many different symptoms of dementia.  Stand up and speak out.  Join us.

Thank you.

I am Richard and I am living with the symptoms, diagnosis, stigmas, of dementia … probably/maybe of the Alzheimer’s type.

Richard

Good news for lab rats living with the symptoms of dementia, probably of the Alzheimer’s type.

More not so good news/crushed false hopes for human beings living with the symptoms of dementia, probably/maybe/perhaps of the Alzheimer’s type.

“A beautiful theory has been destroyed by an ugly fact.” - Thomas Huxley

For the second time in less than two years, Pfizer has again regretfully announced the Russian over-the-counter antihistamine Dimebon has failed.  It worked for a bunch of lab rats and a dozen or so Russians, but when tested in a double blind international study, folks who took the real pill did no better than folks who took the sugar pill.  The first time around, some of the folks who took the placebo did better than those who took no pill, and the reall pill.  Go figure.

Unfortunately, Pfizer did not make the rats available for interviews by the press.

Now, this saga isn’t all about money.  I’m sure it is about other things, too.  I just can’t think of them right now.

It first failed Stage 3 tests about two years ago.  It just failed again, this time when paired with other drugs of questionable benefit to people swallowing recycled press releases of Pfizer.  Of course, the fact that Pfizer initially wasted three million dollars of your drug payments promoting the first Stage  studies was ignored from this latest round of press releases.  Pfizer was soooooooo sure this was the “cure” pill and that it also “reversed” the symptoms  of dementia, it formed a sub-company with some researchers.  Yes, the very people who were about to “test” its worthiness helped form the new company.  Apparently, they were soooooo sure, too.

After the first failure, they announced they would look for another statistical model to apply to the data, and perhaps they could “mine” a new result.  Sort of like mining for Gold, and they did not find any.  But, if they tried long enough, they might find “Fool’s Gold.”

The good news is, it apparently “cured” several nude rats and mice living with the symptoms of Dementia, probably of the Alzheimer’s Type, and it was whispered the longer-term effects of this form of mouse/rat Alzheimer’s Disease were reversed!

Unfortunately, Pfizer did not make the rats available for interviews by the press.  So, we only have their word of this breakthrough in animal Alzheimer’s disease.

Is it me, or is this madness (doing exactly what failed the first time around, and this time doing the same exact thing - while expecting different results)?

You decide.

Richard

In an apparent attempt to resurrect the “gold standard” of Alzheimer’s diagnosis, and increase the number of cases of death caused, in part or whole, by Alzheimer’s Disease autopsy findings of plaques and tangles in the brain of the deceased, the Alzheimer’s research community, led by you-know-who, now claims it is okay to diagnose someone as having had Alzheimer’s Disease while they were alive, even though they never exhibited any of its symptoms.  Just several years ago, physicians never wrote the words ‘Alzheimer’s Disease’ on a death certificate.  Now, pathologists are being encouraged to write them postmortem.

This sleight of hand/words explains why recent studies of autopsies of folks who did not exhibit symptoms, yet their brains contained the “tell-tale” signs of plaques and tangles can be labeled as having Alzheimer’s - it was just preclinical - presymptomatic.  Thus, regardless of symptoms or no symptoms, you too can be classified as having lived and died with Alzheimer’s Disease.

Hooray!  The Gold Standard is back!  Therefore, any time plaques and tangles are found in a brain - pathologists are instructed to turn to each other and say, “Yep, he/she had Alzheimer’s disease.”  Cleans up an embarrassing mess, doesn’t it?  There is some evidence that most all brains, if we look close enough, have some tangles and plaques in them.  So, if we wanted to, for fundraising fear-factor reasons, claim everyone who has Alzheimer’s dies, we could do so under their new standards.  Where is the line drawn between naturally occurring plaques and tangles and Alzheimer’s “associated” plaques and tangles?  You decide.  Here we are right back where we started from!

Of course a close reading of these pronouncements reveals slippery words as “plaques and tangles associated with Alzheimer’s.”  No ‘expert’ who wants to sleep through the night, can claim they are the cause of Alzheimer’s, nor can they claim they are caused by Alzheimer’s - if they want to sleep soundly every night.  They claim they are doing this in response to “reflect the current deeper understanding of Alzheimer’s and other dementias.”  But, I guess they didn’t have time to footnote it, or expand on this new “deeper understanding,” and of course this has little or nothing to do with other forms of dementia - they just threw those words in there so that the other half of folks living with forms of dementia, other than Alzheimer’s, wouldn’t feel left out.

Where is the line drawn between naturally occurring plaques and tangles and Alzheimer’s “associated” plaques and tangles?

Here is the mumbo-jumbo announcement.

“New criteria announced for assessing Alzheimer’s Disease neuropathology.”

The neuropathology guidelines used since 1997 to diagnose Alzheimer’s disease at autopsy have been updated to reflect a deeper understanding of Alzheimer’s and other dementias.  The effort, a project of the NIH and the Alzheimer’s Association, will help pathologists characterize Alzheimer’s-related brain changes at death in people diagnosed with dementia and those who have not yet shown clinical symptoms, taking into account that the disease process may begin a decade or two before outward signs like memory loss appear.  Further, the new guidelines recognize the importance of reporting pathology findings for all diseases that contribute to dementia - not just Alzheimer’s - related changes - and to correlate those findings with clinical symptoms of dementia, and then only to determine whether Alzheimer’s pathology was an underlying cause of the dementia.  The new criteria no longer requires a dementia diagnosis while the person was living, as studies suggest that Alzheimer’s develops years before it becomes clinically evident and research has revealed that the brains of even cognitively normal people may have Alzheimer’s-related brain changes.

Thus, you should look for a dramatic rise in the number of postmortem diagnosis of Alzheimer’s; all of which ignore the fact the deceased exhibited no symptoms of ‘probable Alzheimer’s.’

My, oh my.  What a world we live in.  I realize this is not a big deal for most folks.  It’s just another piece of the historical record of how dementia became Alzheimer’s and how presymptomatic/clinical Alzheimer’s became a legitimized cause of death, and how all this contributes to the Alzheimer’s hysteria creating more donations and support to fund research to create “a world without Alzheimer’s.”

Richard

Click below for past presentations Richard has given around the world, the archive of his 2011 Newsletters (including German and Spanish-translated versions!), as well as his signature-style essays!

Enjoy!

The U.S. Treasury.

I note, not one penny will be spent on more and improved services/psychosocial treatments for persons living with Alzheimer’s or any of the other 50 or so forms of dementia.

And so the “war on Alzheimer’s” begins with a trip to the imaginary bank of the USA to withdraw 250 million imaginary dollars from the account of Mr. and Mrs. Printing Press.  Waiting outside the banks are a clutch/bevy/group of researchers who probably won’t let the money dry before it is all ear marked for this and that research project.  28 million dollars will be distributed to the 5+ million carepartners of persons living with the diagnosis (sorry no earmarked funds for the other 5 + million carepartners of persons living with other forms of dementia), and a few dollars to be wasted on infrastructure improvements (iPhones?).

I note, not one penny will be spent on more and improved services/psychosocial treatments for persons living with Alzheimer’s or any of the other 50 or so forms of dementia.  At least, it was not mentioned in the press release.  When can the 20+ million care partners expect their check for 70+ cents?  The press release did not say.  when can the 5 million folks living with Alzheimer’s expect benefits from the new war chest?  The cure and treatments will arrive January 1, 2025.

It is a good thing we have declared war on half the dementia public health crisis.  It is a bad thing many have been convinced this is the entire dementia public health crisis.

It is a good thing we have moved this incorrectly defined public health crisis up the imaginary priority list of the Administration.  It is a bad thing how they are starting this new war.

Richard

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