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

Unfortunately, the words ‘Alzheimer’s Disease’ has attached itself to lots of myths, hoaxes, lies, and fund raising appeals.

Richard

Hello, I’m still here! But this time here means I am home! And I will be here for almost three months! Trying to catch up right now.

The good news is my second book was asked for a second look by publishers in The Netherlands, the U.S.of A., England, Italy (I think), Sweden and/or Finland, Spain, France (I think), and India. Now begins another 4-6 week wait while they seriously consider it. Thanks to my German Publisher Juergon for exposing the book at the recent Munich Book Fair.

My next big trip is to Alaska!

I am back on my two favorite anti-depressants. I can feel it coming on, like wading through a swimming pool of thickening glue, like being tired and sleepy but unable to sleep for days at a time, like finding my mind wandering and lingering in the shadows of my darkest feelings and thoughts. Little energy produced by my mind or heart. “I think therefore I am” is about the best I can do. It is easier to find reasons to be mad or sad, than it is to feel loved and happy. I am not sure, if it is the travel, the disability, me, air or water pollution, the failure of the supercommittee to come up with a plan, or whatever.

“It is easier to find reasons to be mad or sad,

than it is to feel loved and happy.”

On a more upbeat note - these are pictures of yours truly celebrating the anniversary of the birth on my youngest niece.

I am working again with Alzheimer’s Disease International on three ideas I have on how their website can be more effectively used by people living with the symptoms of dementia.

“I Can, I Will” is growing. I am looking for folks from all over the globe to send the site and/or Laura and or I 3-4 minute videos about how you cope with the stigmas of dementia. I hope they will show them at the Alzheimer’s Disease International Conference next March in London, England.

I am pretty sure this “bout” of depression will be swept away by the traditions, love, and joy that comes with Christmas and my family. Getting a very large screen TV and a large dog would also quite possibly quicken my recovery. (2 hints to my wife)

Richard

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

~ G. B. Shaw