Saturday, November 30, 2013

How Far Have We Come?



So just how far have we come with respect to our understanding and treatment of diseases pertaining to mental health, dementia and Alzheimer’s disease? How has funding for research come along and progressed? 

How about our progress in just this writer’s lifetime? That, of course, would be sixty two years. Where do we stand as of late November 2013?

I spent some time recently digging into these topics and decided to lay it all out in a time line type fashion.

Let’s see, in the year of 1951, the year that I was born,  prefrontal lobotomies were all the rage. An  estimated 50,000 lobotomies were performed in the United States between 1936 and 1960. These were the concocted answer to reducing the violent or distressing behaviors of folks afflicted with schizophrenia, manic-depression (bipolar disorder), etc.  Dementia patients were also sometimes handled in this manner.

As of 1951, the National Institute of Mental Health, established by the National Mental Health Act in 1946 is now just five years old.

1952 
Chlorpromazine, an anti-psychotic drug, known by the brand name as Thorazine, was developed and introduced in 1952. It became the medication of choice as a “mood-calming” drug for use in the psychiatric wards. The use of this drug and others that followed helped reduce the use of the barbaric lobotomies that began in the late 1930’s.

1954
The number of hospitalized mentally ill people reached its peak in England totaling nearly 150,000. 

1955
The number of hospitalized mentally ill citizens in the United States reached its peak at  560,000. 

June 25th 1962. The United States Supreme Court, in the case Robinson v. California, held that drug addiction, is a disease rather than a crime. This forgotten fact surprised me at how our society’s attitudes have changed in  fifty one years or the equivalent of just two generations.

October 31st 1963, President JFK signed into law the Community Mental Health Centers Act. This was part of JFK’s New Frontier, and intended to provide federal funding for community based mental health centers. Only half of the centers would ever be built. None of them were ever fully funded, and the Act did not provide operational funds for the long term. Its enactment would eventually open the door to the deinstitutionalization that would come in the 1970’s.

1968
 Researchers come up with the first validated measurement scale for determining cognitive and functional mental decline in older adults, paving the way to correlate the level of impairment with estimates of the number of brain lesions and the volume of damaged tissue. A step in the direction of better understanding dementia and other brain diseases.

The period between 1970 through 1980 became known as the period of Deinstitutionalization, or as some called it, the “Era of Disowning Responsibility.” State Asylums and Psychiatric Hospitals began to shut down or close. Mental health patients were either dumped on the streets or into the laps of the local communities. As a resident of California, I can recall hearing my folks complain of how, then Governor Ronald Reagan, was taking steps to do this in our state. Pop used to say, “Now they’re all gonna be dumped out on the streets. Who is gonna step in to look after them all?”

December 23rd 1971. Congress passed the National Cancer Act; with this action, the so-called “war on cancer” was launched. Funding for research grows from 233 million annually to nearly 5 billion by 2008. (By way of comparison here, funding for Alzheimer’s disease begins in 1980 with just $13 million dollars).

In 1973 the American Psychiatric Association declares that homosexuality is not a form of mental illness. This was just forty years ago that the APA stepped away from Stone Age thinking about a substantial number of our citizens.

1974 
Congress enacts legislation establishing the National Institute on Aging (NIA) as one of our National Institutes of Health. The NIA will become our primary federal agency supporting Alzheimer’s research.

1976 
Neurologist Robert Katzman identifies Alzheimer’s disease as the most common cause of dementia and a major public health challenge in his editorial published in Archives of Neurology.

1980 
The Alzheimer’s Association is formed. This is also the year that the NIH begins funding for Alzheimer’s research with $13 million dollars.

1982 
The Alzheimer’s Association, a private organization, begins funding research on its own. Between 1982 through 2013, they will have committed more that $220 million to best-of-field research proposals.

1983 
Awareness of Alzheimer’s disease increases, leading Congress to designate November 1983 as the first National Alzheimer’s Disease Month.

1984 
Beta-amyloid is identified. Researchers George Glenner and Cai’ne Wong identified a “novel cerebrovascular amyloid protein,” known as beta-amyloid - - the chief component of Alzheimer’s brain plaques and a prime suspect in triggering nerve cell damage.

The NIA begins funding its network of AD Centers at flagship medical institutions, establishing a nationwide infrastructure for research, diagnosis and treatment.

1986 
Tau protein, a key component of tangles - - the second pathological hallmark of AD and another prime suspect in nerve cell degeneration is imaged and studied.

1987 
The first Alzheimer’s Drug Trial is initiated some eighty two years after Dr. Alois Alzheimer first diagnosed AD, naming it, “the disease of forgetfulness.” (In German, “die Krankheit der Vergesslichkeit” ).

December 29th 1987. The FDA approves Prozac as a new medication for depression. Prozac goes on to become the most prescribed antidepressant drug worldwide.

The Alzheimer’s Association aides the NIA and drug pharma, Warner-Lambert (now Pfizer) in launching and recruiting participants for clinical trials of tacrine, the first drug specifically targeting symptoms of AD. 
The first deterministic Alzheimer’s gene is identified on chromosome 21 that codes amyloid precursor  protein (APP).

1991 
The NIA establishes the Alzheimer’s Disease Cooperative Study (ADCS), a nationwide medical network to facilitate clinical research and conduct federally funded clinical trials.

1993 
The first AD risk factor gene is identified as APOE-e4, a form of apolipoprotein - E (APOE) gene located on chromosome 19 as the first gene that raises the risk factor for AD but does not determine that a person who has it will develop the disease.

The FDA approves the first AD drug tacrine (Cognex). Four additional drugs are approved over the next 10 years.

1994 
Former President Ronald Reagan shares with the American people that he has been diagnosed with AD.

The first World Alzheimer’s Day (WAD) launches on September 21st by Alzheimer’s Disease International.

1995 
The first transgenic mouse model that developed AD-like brain pathology is announced.

1996 
Dr. Alois Alzheimer’s original patient file and study records on August Deter, lost since 1909, are found in a basement among old records on a university campus in Frankfurt, Germany. Following the rediscovery of these records, a modern peer review of Dr. Alzheimer’s work will be conducted to audit and authenticate the accuracy of it. The review discloses that Dr. Alzheimer’s original work was meticulous, thorough and spot on.

1999 
The first in a series of reports is published showing that transgenic “Alzheimer’s” mice with beta-amyloid prevents the animals from developing plaques and other AD-like brain changes.

2003  
National Alzheimer’s Disease Genetics Study begins in a partnership between the Alzheimer’s Association and the NIA. The study is initiated in order to identify additional AD risk genes.

2004  
Researchers at a major international AD conference announce the use of an imaging agent called Pittsburgh Compound B (PIB), a major potential breakthrough in disease monitoring and early detection.

2005  
The Alzheimer’s Association launches a Dementia Journal, Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association in an effort to further support a global interdisciplinary exchange within the AD research community.

2008  
The International Society to Advance Alzheimer Research and Treatment is formed.

NIH funding for AIDS research is $2.9 billion. For cancer funded research it is $5.5 billion. According to the National Cancer Institute, cancer research funding between 2007 - 2013 will average approximately $4.9 billion a year. For 2008, the NIH Alzheimer’s research budget is $412 million.

2009 
The International Conference on Alzheimer’s disease becomes an annual event.

As of 2009, 4.5 million Americans suffer from the severest form of brain disorders - - schizophrenia and manic-depressive illnesses. Out of that, 1.8 million are not receiving any kind of treatment on any given day. This results in homelessness, incarceration and violence. 

2010  
An Alzheimer’s clinical trial database is established for the first time. 

2011 
President Obama signs the National Alzheimer’s Project Act (NAPA) into law.

2013 
The NIH research budget for Alzheimer’s is $449 million. On September 19th 2013, the NIH added another $45 million to this  fund.

The 2013 World Alzheimer’s Report revealed, among other things, that AD is now the 6th leading cause of death in the United States. An estimated 450,000 people will die from AD this year. 2.3 million caregivers are considered long-distance caregivers in that they live  one hour or more away from their care recipients. The total expenditure for Alzheimer’s dementia care in 2013 is approximately $203 billion. By the year 2050, at its current growth trajectory, Alzheimer’s dementia care will rise to $1.2 trillion. 

It is now late November 2013. As of this date, we still have only six FDA approved medications on the market for AD. None of them stop the disease and none of them cure it.

As of this writing, Thursday November 22nd 2013, the Alzheimer’s Association’s latest e-mail sent to me this morning, states that AD is now the costliest disease in America, surpassing heart disease and cancer.

It is apparent that we still have much to do with respect to funding Alzheimer’s disease research and changing our attitudes and approach in how we deal with members of our society who struggle with mental illness. We all need to become better informed and active participating citizens.


Jeff Dodson
November 30th 2013


Saturday, November 9, 2013

Melancholy Alley


As a kid growing up in South Sacramento, I loved exploring alleys. I guess because they aroused my sense of curiosity. What were they for? Where did they lead to? What would I find in them if I entered and followed them? Gee, what a great place to build a kids hideout or maybe even a fort!

My grandmothers house sat just three doors away from one. My childhood home on Phyllis Avenue had one right behind the back fence (all right, technically, that one was a utility company right-of-way easement). Spent plenty of time playing in and exploring them both with my brothers and neighborhood kids.

That was all fifty plus years ago.

Recently, I have found myself traveling  what I consider a different kind of alley. My name for it is Melancholy Alley. A lane that runs roughly parallel to the path that I wish to travel but not very inviting. Mostly empty other than a few rubbish cans here and there along the way. As I walk by each, I chance to quickly peer into the top of those without lids. Rather than trash, what seems to be stuffed in each are old memories, a few regrets, and the odd box containing that great guilt inciting title; “if only you had done this instead.”

In my minds eye, I see myself walking this alley several times each week, slowing my pace to glance at what lies in each of the cans and receptacles along the way. The colors and light that would normally enliven and enrich the scenery are muted. Washed out and without vibrancy. If any of you ever saw the Denzel Washington movie, The Book of Eli, that is the kind of washed out color look that I am talking about. 

I feel like I have become an observer of my life rather than a participant. Engagement has become replaced by detachment. Separation. As if someone pulled the plug on me and overlooked plugging me back in.

 “I don’t want to do anything today. Maybe spend the whole day just napping. Go to work, come home, keep the drapes drawn, stay indoors. All prior outdoor projects and household fix-it tasks no longer hold an interest or priority. I am de-energized.”

The  vitality is missing. I want it back. Let me be 100% present once more.

The grief counselors and psychologists call it mourning, depression or lethargy. Struggling with the aftermath of the death of someone close. No shit. Three as a matter of fact. First, mom Dodson, then my mother-in-law, then pop Dodson. All within the past nine months. 

So this afternoon, I put it down in words; what these feelings, emotions and imagery have been like. 

This is not the kind of blog posting I originally intended for this web site. 

Up to now, I have been all about providing caregiving information for dementia folks and positive, educational books about  spirituality, compassion and how amazing and courageous we humans can be.

I look upon this particular essay as a one-time sharing exercise and hopefully, a personal exorcism of a mild lethargic depression that seems to have clogged up and slowed down my polished, well-oiled writing machinery.

Do not feel or sense alarm for this writer. This is something we all must work through in our own way. No one else can bear the yoke of this wagon for us. I will emerge on the other side none the worse for wear, stronger and more resilient that I was once before. 

A loving and devoted family helps. 

A loving and devoted wife is even better and who does not realize that she is my ace-in-the-hole card. She, in addition to a nearly four month old granddaughter who is as cuddlesome and sweet as they come. Two feminine personalities with spirits that trump all negativity. My wife came factory-equipped with her own gossamer wings firmly attached. Granddaughter shows the tell-tail signs too with two little nubbies under the skin and behind her shoulders. Call ‘em wing buds.

It is uplifting and so true about what the wise old sage once said: “No storm lasts forever.”

I am close to stepping out of my Melancholy Alley. I found an unlocked gate and a path between two buildings leading out to a busy and bright sunlight lit street


Jeff Dodson
November 9th 2013