Last Newsletter from Richard Taylor

I received this yesterday, and decided that as Richard was so well admired and loved by thousands of people around the world, that I would share it with you.
Richard will be sadly missed by many.
I know that many friends are taking part in an online remembrance project, tomorrow, but due to a hospital appointment, I will not be able to take part  

To  All:
I could never thank all of you enough for all the kind words you have sent to our family about Richard. Many of you have sent the most amazing stories about how you met Richard, projects you worked on, and even how he touched your lives in his own unique way. That was the Richard I grew up knowing. As promised I am sending out the last newsletter Richard started. I am going to send it out exactly as he left it and hope this will still provide everyone some helpful information. So apologies in advance for the lack of editing. In the near future I will have to close down Richard's E-mail account. I know some of you still have a few projects working with Richard which I am doing everything I can to jump in and help see completed. So I ask that any of you who need my direct contact information to please reply and I will be sure to get it to you.

The first question I am continually asked is who will take Richard's place in this fight? My personal wish is not for any one person to replace him. I would wish to see hundreds if not thousands that take his place and all STANDUP AND SPEAK OUT!


 From the Inside Out 

News and views      
  from between      
 the ears of      
 Richard Taylor,      
 a person living      
 with the  symptoms      
 of dementia.      
Hello, again. Still Richard here, still living with more and more symptoms of dementia I can't seem to work around/overcome. It is a sign, certainly of my advanced age, that every time I send one of these newsletters out there is a large deteriorating health section. This issue is no different, but I'll spare you the details and just mention my sometimes out of control heart, my aching lungs caused by fluid accumulation, and more dementia symptoms and stronger symptoms to the point where I just can't seem to find a means of "fixing" them so they don't interrupt the life I want to live.
Without knowing it for sure I have been overwhelmed by my cognitive disabilities. Like a blanket carefully laid over my head while I was sleeping, and when I awoke I saw and reacted to a different world around me, and in me. I can't trust my own judgment any more. I can't handle my own calendar, meetings, goings and comings from day to day. I still know what to do, most times. I just forget it, confuse it, and/or screw it up while I am doing it. I have lost more weight and am to the point where my doctor wants me to walk around with a feeding tube hanging out of my side. You walk up and down the aisles of grocery stores and the tube sniffs out things I should be eating, pulverizes them, and sucks them in my side and deposits them somewhere in my small intestine.
There isn't much new in this "newsletter" which in and of itself is a reflection on how I see Alzheimer's, especially Alzheimer's research, and the National Alzheimer's Association. Same old same old, same old blinders, same old lack of a plan, same old whine for money, lots more money. They are celebrating the actions of one committee in the house which voted to add 350 million dollars to the 545+ million they are already spending, without a clue as how it needs to be spent, nor why it needs to be spent here or there. Some research supporters are already sounding the threat that until Congress funds research at the 2 BILLION dollar level they aren't going to reach the little bit of heaven they have promised by 2025. A world without Alzheimer's is their goal and I have no doubt that if they find out what causes it, if what causes it has little to nothing to do with the disease process, and more to do with a natural part of growing old like arthritis or, poorer eye sight. We can work on the symptoms of these issue, but we can't "stop the ageing clock." Even with the most expensive treatments, even if they discover a way that everyone can afford the cure without selling their own organs to cover the high cost, you will all have to wait until the current 5+ million souls living with the symptoms pass away, then you can talk realistically about what a world without dementia, probably/maybe may be possible.
Until then I shall continue to live my life as best I can, with enablers supporting me more and more. I shall never give up, thrown in the towel, pull the cover over my head and waiting for the next BINGO game to begin.
I shall always try every day as hard as I can to be Richard. I shall try every day to find joy, meaning, usefulness, purpose in my life. I invite 5,000,000 kindred spirits to join me in adopting a positive self-image of yourselves, a positive outlook to your lives, and seeking to squeeze out as much out of each day as is possible! Find a purpose, live through your purpose. Truly be all you can be, not what "experts" tell you.
In This Issue
The Cure is Not My Top Priority
Issues/Topics/Concerns/Ideas/ Opinions/Science/Myths Which Sometimes Keep Me up at Night.
Money, Money, Money! Trust us, we will tell you when you have given us enough!...Hello, and so the f...
Partly Cloudy, chance of reading something of interest and value to you
Did the Devil make them do it, or was it Greed?

While attending Alzheimer's Disease International in Perth, Australia last April, I was invited by Executive Director Marc Wortmann to attend a meeting to share opinions about what our top priorities should be regarding Alzheimer's. Although my conference schedule did not allow me to attend in person, I passed my comments on to Marc, because I feel very strongly about this, and I knew that my thoughts would likely fall outside the majority opinion.

I think it's fair to say that most of the people at the meeting-and many others around the world-would list research into new medications as the top priority for Alzheimer's. Many are pushing for a cure, and I imagine that even most of those who realize how daunting a prospect "cure" truly is would still argue that developing new treatments to slow onset and progression would take the top slot.

I beg to differ and will probably ruffle a few feathers in doing so. But keep in mind that in spite of my holistic approach and rejection of many narrow bio-medical precepts, I am viewing this as a physician and scientist (and a bit of a mathematician as well).

I told Marc (C.E.O. of Alzheimer's Disease International) that
I believe our top priority is to build capacity and capability in our communities, both for our aging population in general, as well as those living with changing cognitive abilities of all kinds.
Here's why: The rapidly expanding demographics regarding Alzheimer's prevalence are a microcosm of our global aging boom, because Alzheimer's (along with most other forms of  dementia) is, first and foremost, an age-related condition. The rapidly rising number of people living with the diagnosis is not due to our risk increasing-in fact recent studies show that the lifetime risk of developing Alzheimer's is decreasing with each generation, mainly due to better preventive and cardiovascular health. In other words, your lifetime risk of getting Alzheimer's will be less than that of people born in the decades before you.

The rapidly rising number of people with Alzheimer's that we see in the US and most high-income countries is mainly due to all of those aging Baby Boomers, who are creating a huge bubble in the ranks of older adults-10,000 Americans turning 65 daily. And we as a nation are ill equipped to respond in a positive way to this aging boom, let alone the increasing numbers of people living with a diagnosis of dementia. Our solution to date has been to force people to live fairly independently, with very little in the way of age-inclusive community supports; and then when they can no longer manage on their own, we move them to a variety of "senior living" environments, which are booming as quickly as the Boomers!

This is a recipe for disaster.There is only one number you need to know to understand this: the Potential Support Ratio (PSR), defined as the number of working adults for every retired adult. In 1950, the global PSR was 12:1-that is, twelve working adults for every retired adult. By 2000, the ratio had fallen to 9:1, and in 2050 it will be 4:1! So we clearly cannot respond to the aging boom with more senior living campuses; who will build, staff, and maintain them??

The only sustainable answer is age-inclusive communities, and it follows that such communities must accommodate all abilities, including changing cognition. There are other benefits to this approach-keeping elders (and people living with dementia) engaged in community will not only reduce excess disability and costs; the community also benefits from the wisdom and experience of older adults (including those living with dementia).

At Alzheimer's Australia Western Australia in Perth, a program has been running for several years that connects people in the community who are newly diagnosed with Alzheimer's with volunteer opportunities in their community. So when much of society is saying, "You're dying; get your affairs in order" (a message described by Kate Swaffer as "prescribed disengagement"), the message from AAWA is, "We need your talents; your neighbors need your help. You have a purpose." Compare the outcomes and costs of this approach versus the probable early move to a "senior living campus" or nursing home that disengagement would cause.

In the UK, 30,000 bus drivers around London were given education about dementia, to help them to be more understanding and helpful of their riders' needs. Inclusive community initiatives in UK, Australia, and many other countries are far ahead of the US; and as with global warming, the period of time during which we can respond before things get really bad is growing short.

Do I support drug research for Alzheimer's? Of course I do. But I feel that meaningful progress in drug treatment will be very slow in coming, and that there will never be a day when people do not forget more than we think is normal; that's the result of nearly doubling our life expectancy over the past century.

Even if we waved a magic wand and cured all cases of Alzheimer's tomorrow-the sixth leading cause of death in the US-what would the result be? More older people, whom we are already ill equipped to accommodate. And many of them will eventually develop other age-related conditions, including the myriad other forms of dementia that exist.

So, to me, the priority is clear. Developing an inclusive society is Job One. You can read this argument in much more detail, along with a detailed vision for the "Inclusive Society," in Chapter 11 of my latest book, Dementia Beyond Disease. Tell me your thoughts about this!

Al Power

Hello, as usual Dr. Power's message should be characterized as Dr. Powerful. Organizations, large organizations are trying to confront the inevitability of a world population which has never been older, never been as vulnerable to the symptoms of dementia by throwing money at a bunch of willing researchers to cure away the problem. It hasn't worked, it isn't working, it won't work (but that's another story).

What we already have to work with are our communities. While readiness varies greatly between governmental entities, citizen support services, and an aging and aged psycho social infrastructure, these services can be, should be our first respondents to this crisis. Our communities aren't just the best vehicles to work with, to strengthen, to fine tune, they are our only tools to realistically deal with the inevitability of this growing segment of everyone's population.

While we worry about pot holes, more police officers, occasional terrorist's terror the aging of the world continues. When will human needs trump all and become the priority of now and of the future? When will our leaders think, plan, and act for a better tomorrow starting today?

Slow down, if not temporarily stop this baseless and useless rush to fund cure research. If you want to collect money for a real issues of dementia then support psycho-social research. Leadership isn't lacking, there simply isn't ANY forward thinking leadership. A cure is not a solution, it is a twenty plus year hope of many. It is an easy "fix." A fix which simply does not exist, and will never exist to wipe away dementia and return us all to the golden years when people didn't live long enough to confront the symptoms of dementia, they just died earlier.

It is time for us each and all to stand up and speak out about an issues which is unresolved, out of control, and impossible to reach.

Forward together, towards true, inclusive, and well funded community efforts to adjust and support the aging of their citizens.

Opinions/Science/Myths Which Sometimes Keep Me up at Night.

Stigmas                                               Language
Giving "Care"                                        Psychotropic Drugs
Problem Behaviors                                Nursing Homes
Memory Communities                            Alzheimer's Disease
Lewy Body Dementia                             Vascular Dementia
U.S.A. National Plan                              Fighting Alzheimer's
Curing Alzheimer's "A world without Alzheimer's Disease"       
Death                                                  Imaging/bio-markers/Amyloid/Tau
Purpose                                               Culture Change
Staff Ratio to Residents                         Diagnosing Dementia
FTLD (Frontal Temporal Lobe Dementia) Atypical Alzheimer's Disease
The Gold Standard for diagnosing Alzheimer's Disease    
Brain Science                                       Memory/Forgetting
Professionals                                        Physicians
Bingo and other re-creative activities     ________________ Therapy
Drugs                                                  Alzheimer's and Dementia
The use of anti psychotic drugs to control problem behaviors   
Diagnosis                                             Carer Stress
Progression/Stages                               Learned Helplessness
The Self Fulfilling Prophecy                    Dementia Friendly Cities
Environment as a form of Treatment      Cures
Correlations                                         Delirium/hospitals/dementia
"Hope"                                                Lying/Therapeutic Fibs
Disease Modifying Treatments             
"Let's cross those bridges when we come to them!" 
The cause of Dementia/Alzheimer's      Music Therapy
Suffering                                            Testing
Current Research (Nibbling in the dark)


Money, Money, Money! Trust us, we will tell you when you have given us enough!

Hello, and so the folks who claim to be taking care of our brains are demanding of congress to "show them the money." I hope congress doesn't ask them to show some results, show them a time line, show some limiting of the scope of research because they now actually know where they are going. Until then I suppose each of these bodies can continue to blame the other for why they aren't making more progress. In the meantime - the people 
whose brains need the most support from each of the organizations are left
to fend for themselves. Shame on you all for arm wrestling each other for more  money, power  and results, and have  so little to show for it thus far, and so little to offer in the way of science and a rational plan for the future, other than of course more money, faster please.

Partly Cloudy
 Chance of reading something 
of interest and value to you

What's new in my "Cloud"?

I find it easier to send my writings and presentations to my cloud site than it is for me to post them to my home page (although I attempt to do both). Float up to the cloud and look around. There are lots of links, articles, opinions floating around up there, and new ones appear every week.


If you would like to read more of writings and/or 
follow my postings more closely please; 
friend me on facebook (richardtaylorphd)
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You may sign up for this newsletter on my home page (upper right hand corner of home page). Most all of my writings and presentations are posted on my cloud site which is accessible on my home page.Use this area to provide your contacts information about your organization.


Richard Taylor, Ph.D.
Alzheimer's from the Inside Out


Did the Devil make them do it? 
Or was it Greed?

Hello, shame, shame on the makers of Namenda. And where is the moral force of the world's Alzheimer's Associations over this grab for profits at the expense of serving human beings? 


Lewy body dementias (LBD) affect an estimated 1.4 million individuals and 
their families in the United States. 
At the Lewy Body Dementia Association (LBDA), we understand that though 
many families are affected by this 
disease, few individuals and medical professionals are aware of the 
symptoms, diagnostic criteria, or 
even that LBD exists. There are 
important facts about Lewy body 
dementias that you should know 
if you, a loved one, or a patient 
you are treating may have LBD.

1. Lewy body dementias (LBD) 
are the second most common 
form of degenerative dementia.
The only other form of degenerative dementia that is more common than 
LBD is Alzheimer's disease (AD). 
LBD is an umbrella term for dementia associated with the presence of Lewy bodies (abnormal deposits of a protein called alpha-synuclein) in the brain.

2.LBD can have three common presentations:

*Some individuals will start out 
with a movement disorder leading 
to the diagnosis of Parkinson's 
disease and later develop dementia. 
This is diagnosed as Parkinson's 
disease dementia.

*Another group of individuals will 
start out with a cognitive/memory 
disorder that may be mistaken for 
AD, but over time two or more 
distinctive features become apparent leading to the diagnosis of 'dementia 
with Lewy bodies' (DLB).

*Lastly, a small group will first 
present with neuropsychiatric 
symptoms, which can include hallucinations, behavioral problems, 
and difficulty with complex mental activities, also leading to an initial 
diagnosis of DLB.

Regardless of the initial symptom, 
over time all three presentations of 
LBD will develop very similar 
cognitive, physical, sleep and 
behavioral features.

The most common symptoms of 
LBD include:

*Impaired thinking such as 
l oss  of executive function
(planning, processing 
information), memory,
or the ability to understand
visual information. 

*Fluctuations in cognition, 
attention or alertness;

*Problems with movement
including tremors, stiffness,
slowness and difficulty

*Visual hallucinations
(seeing things that are not

*Sleep disorders, such as
acting out one's dream while

*Behavioral and mood 
symptoms, including 
depression, apathy, anxiety,
agitation, delusions or

*Changes in automatic
body functions, such as
blood pressure control, 
temperature regulation, 
and bladder and bowel 

2. The symptoms of LBD are
treatable: All medications
prescribed for LBD are approved
for a course of treatment for
symptoms related to other 
diseases such as Alzheimer's 
disease and Parkinson's disease
with dementia and offer 
symptomatic benefits for cognitive
movement and behavioral symptoms.

3. Early as accurate diagnosis of
LBD is essential: Early and accurate
diagnosis is important because LBD
patients may react to certain 
medications differently than AD or
PD patients. A variety of drugs,
including anticholingergics and some
antiparkinsonian medications, can
worsen LBD symptoms.

4.Traditional anti-psychotic 
medications may be contraindicated 
for individuals living with LBD:
Many traditional anti-psychotic
medications (for example,
haloperidol, thioridazine) are 
sometimes prescribed for 
individuals with Alzheimer's 
disease and other forms of dementia
to control behavioral symptoms.
However, LBD affects an 
individuals brain differently than 
other dementia's. As a result, these
medications can cause a severe
worsening of movement and a 
potentially fatal condition known as
neuroleptic malignant syndrome
(NMS). NMS causes severe fever, 
muscle rigidity and breakdown that 
can lead to kidney failure.

5. Early recognition, diagnosis and 
treatment of LBD can improve the 
patients' quality of life: LBD may
affect individual's cognitive abilities,
motor functions, and/o ability to
complete activities of daily living.
Treatment should always be 
monitored by a physician and may 
include: prescriptive and other
therapies, exercise, diet, sleep
habits, changes in behavior and
daily routines.

6. Individuals and families living
with LBD should not have to face
this disease alone: LBD affects
every aspect of person - their
mood, the way they think, and 
the way they move. LBD patients
and families will need considerable
resources and assistance from 
healthcare professionals and 
agencies. The combination of
cognitive, motor and behavioral
symptoms creates a highly
challenging set of demands for 
continuing care. LBDA was formed
to help families address many of 
these challenges.

7. Physician education is urgently 
needed: An increasing number of
general practitioners, neurologists, 
an other medical professionals are
beginning to learn to recognize
and differentiate the symptoms of
LBD - the most misdiagnosed
dementia - from other diseases.
However, more education on the 
diagnosis and treatment of LBD is

10, 9, 8, 7, 6, 5, 4, 3, 2, 1, 10,
 9, 8, 7, 6, etc, etc.

We will never be closer than 10 years 
to a cure for Alzheimer's disease. Or 
to say it in a positive manner we will 
always be only ten years away from a 
cure for Alzheimer 's disease. 
Or to say in in a fund raising commercial/letter/appeal "We are 
closer today than ever before to the 
cure for Alzheimer's Disease."

Each year as we discover more and 
more about how the brain seems to 
be acting; each year as technology 
allows us to see more and more of 
how the brain is actually working; 
each year as we make up new 
theories of what all this means we proudly/loudly announce we are 
coming closer and closer to actual 
artificial intelligence, brains that 
think like humans, and a cure for Alzheimer's Disease.

"Why?" you may be asking yourself? Because the more we believe we 
know about it, the more we know 
we don't know about it. Over the 
course of the last ten years it has 
been loudly predicted/trumpeted 
that "a light at the end of the cure 
tunnel" had been seen by many researchers. Major breakthroughs 
are announced monthly by some 
cure cheerleader or another. One 
year it was said: "The bridge from 
having no idea how to cure it to the 
actual cure was two thirds complete." 
And finally this year is was confidently shouted: "It is no longer a question 
of if, but when we will cure Alzheimer's Disease. We know how to do it, we 
only need more money faster to 
beat this thing ten years from now." 
And so again the ground has been 
laid for another moving of the target 
date, this time because Congress 
didn't throw enough money after 
this search of blind alleys.

Researchers, who for years drew 
their subjects from a pool of almost exclusively folks in their 70s and 80s 
and who were exhibiting most all the symptoms of most all of the forms of dementia, are now drawing subjects 
from folks who have been diagnosed 
as have mild cognitive impairments. 
Some subject pools are labeled as 
"pre-clinical," "non symptomatic." 
The Amyloid and Tau researchers 
have raced up and down the 
continuum of symptoms in search 
of just the right mix of severity and 
variety of symptoms to feel 
comfortable they were truly 
working with folks living with 
Alzheimer's disease. Presently 
they have settled on a tiny minority 
of folks living with the symptoms of dementia and whose genetic 
make-up includes a combination 
of several of a dozen different genes.

Meanwhile back at the ranch, 
inhabited by folks living with the 
symptoms of dementia and who 
have been told by someone(s) in 
a white coat(s) they have Alzheimer's disease, these folks are each year 
faced with living with/coping with/understanding more and 
more cognitively disruptive thinking/remembering/organizing/
and so on and so on. Walks, runs, 
football games/shooting events/and
so on and so on are organized each 
year to raise enough more money to 
make sure the 10 year goal line is still reachable. The only problem is 
everyone January first someone 
keeps erasing the goal line, and 
redrawing it another year away 
while announcing a desperate need 
for season ticket holders to renew 
their pledges and reminding all the 
cost of the game keeps increasing 
each year.

The fact is we don't know what causes Alzheimer's disease. We don't know 
it's exact symptomology or progression. 
We don't know what we don't know, 
and what we thought we knew last 
year and led us to the 10 year 
prediction now turns out that we 
don't know what we didn't know, 
and now we know it will take us 
another year to learn what we don't 
know. On the other hand, we have 
known the same label, Alzheimer's 
Disease, for many, many years. So 
many years in fact we seem to have forgotten it is only a label, not a 
proven actual consensus based 
scientifically accepted term. It 
simply is not a fact of life which 
most brain scientists accept. The 
symptoms attributed to it are real, 
but that in and of itself doesn't 
make the label a fact. The symptoms 
are shared by many forms of 
dementia that we do know exist. 
We have theories, facts, scientific consensus that each year still fit 
with the original meaning of the 
labels of this or that form of dementia.

Seldom, if ever do the folks working 
on and with these other forms of 
dementia take it upon themselves to declare just what year they will cure 
this or that form of dementia. And, ironically they know more about their 
form of dementia than do those who speak/think/live within the walls of 
the Alzheimer 's disease research/promotion community. 
Amazing, simply amazing, isn't it?

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