Hello, again
And/or welcome for the first time to my monthly collection of information, experiences, thoughts, and feelings from yours truly, a person who is living with the diagnosis and symptoms of dementia, probably of the Alzheimer’s type.
My big news this month is that I think I have convinced the Murray Alzheimer’s Research and Education Program folks in Waterloo, Canada (near Toronto), and Laura Bramly to  work with me and my idea for a Dementia Summer camp for couples who are facing the diagnosis of dementia.
My other big news is I am working with my brother, Robert on a new book that will consist of the 100 most frequently asked questions of yours truly by people living with dementia and/or their caregivers, and 100 responses/answers/musings to these  questions. It is a lot more work than I first thought, but I am committed to getting it done by the end of the year and published sometime next year. Start saving your money today to purchase it next year!
Attention, focus, staying on task whatever it is called is increasingly elusive to me. I start lots of things, finish few of them, and keep jumping/wandering from task to task. Its frustrating that I can think about it, but I can’t seem to stop it. Word search (although not evident in my writings because I pause and seek out the right word) also plagues me more and more.
Thanks for opening this up, I hope you find some value for yourself and/or others by reading it.
Richard
“The single biggest problem with communication is the illusion that it has taken place.” –G.B. Shaw
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Hello
As I mentioned above, Robert and I are working on a new publishing venture for me. I’ll include some of my copy from the new book in my monthly newsletters. Here are two of the 100 questions and answers.
Dear Richard
I just finished reading your book Alzheimer’s From the Inside Out. I am a kindred spirit. I’ve been living with the same diagnosis for six years. 
You seem mad and angry in the book. Are you still feeling that way? I am, but I don’t always know who I am mad at. What about you?
Andrew J.
Waxhaw, SC
Hello
Yes, I was angry when I wrote the book (the first three years after I was diagnosed). Anger is a very strong emotion and it is usually focused on a real or imagined grievance. I was mostly angry at and with my spouse, unfortunately for her and for me. It didn’t do much good being angry at God, or Dr. Alzheimer’s, or my Doctors. They never answered me! I was very angry at that time in my life at the then current President, George W. Bush. I’ll leave you to decide if that was free floating anger attaching itself inappropriately to the President of the United States, or he fully deserved my anger.
I knew I was angry, I most always felt angry. Whenever I acted out of anger and became angry at someone or thing I frequently acted and felt more angry than was appropriate or indeed as angry as I would have been pre diagnosis.
Yes, I was mad at the diagnosis, with the diagnosis, and because I was diagnosed with dementia, probably of the Alzheimer’s type.
The anger was, and to a much lesser extent still is fueled by my fears: Fears of today and tomorrow. Fears of losing control. Fears of losing myself. Fears of being a burden to others I love.
It was the disease talking when I became so angry with my spouse for saying or doing something that had nothing to do with my diagnosis. But, the talk was coming out of my mouth. It was me talking! It is understandable why others returned my anger with their own anger.
I’m not as mad as I was. I have come to some peace, most times, with the fact of my diagnosis and the inevitable progression of my symptoms. I still don’t like it, but I’m not so angry about it. This change has greatly improved my relationship with others, especially my spouse.
I don’t have a formula to defuse anger. I was in therapy for a year to help me deal with my anger, and it is working for me (sort of, and most of the time). What I discovered in my therapy was that much of my anger came from an irrational belief that everyone I loved should respond to my diagnosis exactly as I believed I would respond to them if they were diagnosed.
Everyone has to decide for themselves how to deal with their anger. And, in the interests of living a full and most times enjoyable life post diagnosis, the need to learn and practice anger management/understanding seems to come with the diagnosis. You have my best wishes on your journey to manage your anger. Its not fair, its not right, its not good that we are where we are between our ears, but here we are nonetheless.
Manage it, or it will manage and eventually consume you and your positive relationships with others.
Richard
This is the sum of duty: do naught to others which if done to thee would cause thee pain.
The Mahabharata
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| Dear Richard -
I never seem to know what is the right thing to say when my husband asks me a question. I worry I am telling him the wrong information, the wrong way, with the wrong emphasis and accompanying non verbal clues as to what I actually mean.
How do I know how to find the “right answers”? Where is the list of best answers? Who determines if indeed it is a “right” answer I am  giving? The pressure seems to be all on my shoulders. Lots of people give me advice on what to say, mostly after I have said it. There are check lists, and principles, and word for word examples of exactly what to say and what not to say.
What is the “Right Thing to Say?”
Louisa A.
Braintree, MA
Hello!
Frequently folks ask or write me for advice. They want to know what is “the right thing I (they) should say?” I really do not know what to say. I am not them. I do not live with or in them. I am still a work in progress deciding what I should say! And, in addition to that excuse for not answering them directly with a “dear Abby” type of advice response - What I am finding is there is no one “right” thing to do or say. Some are better than others, especially better in certain circumstances, but life is easier if we just would trust, love, be open, and accept each other for who we are today. And, if we don’t know for sure, we should ask, we should listen, and we should just be.
Maybe sometimes we just shouldn’t say anything if we are in the midst of an emotionally charged and defined moment. Maybe we should say, “time out.  ” “I’ll be back in five or ten minutes”
Being is difficult enough without dementia, being and sharing that process of being with one of the sets of symptoms of dementia is made even more difficult by others attempts to hang on to, shape, reinforce parts of our being which are either not accessible or aren’t there anymore. We are being in the moment regardless of the best or worst behaviors of those around us. It’s just it would be easier for all concerned if we stopped this “long good bye” nonsense” and started to say “hello” to each other more often.
Medically accurate and socially acceptable labels for diseases are issues for physicians to lose sleep over. The fact for us is it really does not need to make a difference to us what words others use to label our syndrome, our collection of atypical behaviors. It is how we decided to react emotionally to the words we ourselves utter, think about, and tell each other.
We all need to keep constantly reminding ourselves and each other of this. We need to enable everyone to be himself or herself, to understand themselves, to love and to feel loved. The medical community, society, culture, history are all trying to convince us who we are, and we are not - who they say that is. We are ourselves. That, to me is what getting “it” means. At the same time we are, we must be all of ourselves, we are also a person with dementia who loves, needs, lives with his/her caregivers. They too need a “right” answer.
Perhaps the “right answer” for me is the wrong way to frame my answer to this question. I need, we need to find a response that works for both of us. A response that meets your needs and my needs. To find this we need to pause and attempt to understand each other’s needs at that moment. This takes more time, takes more effort, and it has a much higher probability of producing an answer that is “right” for both us - as opposed to blurting out the first thought that comes to mind when I ask you a question. Perhaps, indeed we need to stop looking for right and start talking to each other about what meets my needs, your needs, and our needs.
I acknowledge that for folks in the early stages of dementia this is an easier process than for folks who are more consumed by their symptoms. But the principles of understanding, appreciating, and enabling still apply to your answers to our questions.
Thanks for asking this. I know it is not a direct answer to a direct question. May it is the wrong question to ask, but thanks for asking it and making me think about this. Perhaps this is a conversation you should have with the person for whom you are caring.
Richard
“What it comes down to, for me, is that people want to do what will make them happy, but in order to understand that they really have to understand their world and what is going on around them.”
Mark Zuckerberg, founder of Facebook
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Brain Freeze!
Hello.
At a recent conference on Alzheimer’s Disease, advocates were told the old/new strategy (justification for spending lots more money on research) is not necessarily to cure the disease right now, let’s at least discover enough pills so that if people will take them, and they can afford them, and there are side effects which people are willing to live with, and did I mention if they can afford them - then the symptoms of the disease will be sort of frozen - they won’t get any worse, they won’t get any better - folks just won’t have to deal with more of them.
In the mean time, researchers will be working day and night to discover the elusive cure for the disease(s). They will be working on ways to reverse the course of the disease. The goal is to live in a world without Alzheimer’s disease and a world with no one living with the symptoms of the disease caused before we discovered a way to cure it.
“Oh!” say I and 10 million people already living with the disease, “Why didn’t you just tell us what you wanted to do to and for us in the first place?”
So now the justification for lots more money = lots more research = more results is: “we won’t necessarily cure the disease, just halt its progress.” So a “world without Alzheimer’s,” while still the goal, will first become a world with lots of Alzheimer’s, only the progress, severity and number of symptoms will be slowed, or perhaps even frozen in place.
If we can’t figure out what causes it - maybe we can figure out how to slow it down to the point where we can maintain people in the disease (with whatever symptoms they are currently living with), perhaps even keep them at home for an extra year before they “must” be institutionalized (that would save the government big Medicare bucks).
What if folks can’t afford the twice a day hands full of pills needed to “halt the progression?” We can give them a tax credit.
What if the progression isn’t being halted, only the outward symptoms are being held in check? Isn’t this essentially what current medications claim? The disease progresses at about the same rate in everyone, but take these pills and it will be awhile before you quickly catch up (symptom wise) with folks who haven’t taken the pills. We can all be thankful they didn’t act as if they were getting worse.
Maybe, with the extra year or two we can “buy” with these pills we will discover a cure! Maybe we will discover how the brain works!
Maybe we will discover what happened the second before the big bang!
Former Speak of the U.S. House of Representatives Gingrich told us we are going to know five times more about the brain in the next six years than we know today. Surely more is better…or perhaps more is simply more. And….therefore….perhaps……
Maybe, maybe, maybe.
What about today, damn it! What about tending to the real needs of today’s citizens? Have we already done our best to figure out how best to live with the disease? How to find a new purpose in life living with the disease? How to be happy in a nursing home? How to convince families to honor, respect, and invite into their homes their own parents? Of course not.
Research, effort into these current problems of real people is not as glitzy as discovering the “breakthrough” that leads to the cure of the disease (if indeed it is a disease amenable to a cure in the sense that “here take this pill and you will be better, cured as it were”).
It’s harder to figure out - too many variables - too complicated. Well that doesn’t keep us from throwing more and more money at brain research. Save the brain and ignore the person, the family, the community in which the brain lives.
Maybe we will and maybe we won’t, figure out how the brain actually does and does not work. The point from my perspective as one living with the disease is how easy it is for people who don’t have the disease to convince themselves living with the disease for a year or two or three or four more beats not living with the disease for a year or two or three or four more because they died. Shouldn’t someone ask us? Shouldn’t we be included in these initial huge decisions being made by of all the people the folks who have the least to benefit from the decisions from the point of view of the consequences of the disease but the most to gain from it for a variety of mostly well intended but certainly with more than a teaspoon of self interest?
I don’t questions anyone’s motives, I question their 100 year history of failing to involve the people in whose name they act in the decision making process. Now we’re talking big bucks, now we’re talking about the survival of Medicare as we know it. Now, and always we are talking about adult human beings - not children, not beings, -human beings. This current national dialogue that has taken 100 years to begin, began with one person with dementia speaking up and then…..Let’s get back to “the experts.”
Let’s talk to knowledgeable caregivers, to M.D.s to representatives of organizations dedicated to funding the search for a world without Alzheimer’s, let’s talk about the NIH, let’s talk about waste and fraud. But first and last let’s talk to people who are living with the disease. Let’s get them on the committee. Let’s work with them.
I tire over trying to think through some of the cock-eyed rationalizations self-interest groups think up to justify giving them more money, while ignoring their lack of progress and their lack of a consensus even amongst themselves that what they are doing is the “best” course of action. We won’t be here tomorrow. We won’t be the leaders. But, we are here today, and others will be here tomorrow. It isn’t right to expect people with dementia to be the “voices of reason” in the setting of National priorities concerning their disease. It also isn’t right to exclude them.
Wait a minute, at least a minute, perhaps even two or three before we rush off trying harder (this time with an adjusted justification), still without a strategy other than more must be better, still without a consensus of where best to spend all these extra bucks we found somewhere, still without knowing how or even if we can deliver something we discover to the parts of the brain we have yet to identify, and now acknowledging the best we are now hope for is to freeze human beings in whatever state they are with the disease (no one dares to say we are actually going to “heal” the brain when it comes to dementia).
So here I am. Here are almost 10 million people living within one of the disease of dementia, trying to get through the day, around our symptoms. Watching a national debate from the sidelines about us.
Am I the only one who thinks “they” (whoever they is) keep making stuff up as they go along? Blind to the sides of the boxes they helped to build around themselves. Defensive when other stakeholders (dare I say the real stakeholders - the people with the disease) ask (increasingly demand) to be part of the process - not maybe/just advisors.
Is that what leaders do?
Richard
The trouble with the world is not that people know too little, but that they know so many things that are not so.
Claude Bernard: (1813-1878) French physiologist
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I think not
International Conference on Alzheimer’s Disease drew nearly 3,800 international attendees to Vienna to share the latest ideas, thoughts and theories in dementia guessing/science. (Those “in the know” refer to it as ICAD) Breaking research and new technology captured global media attention as the world’s leading scientists explored innovative ways to unlock the mysteries of Alzheimer’s. Unfortunately, it seems the more we know about Alzheimer’s, the more we also seem to know that we don’t really know that much about Alzheimer’s.
This “for profit” conference was purchased by the National Alzheimer’s Association several years from its original organizers and owners. (Was there a National “Walk” to purchase this conference?) Shortly after last year’s conference, there was a ground swell of support for making it a yearly rather than an every other year event. Guess where most all the water for this ground swell was coming from? The National Alzheimer’s Association, of course. They make money off of this, they enhance their reputation as a research organization dedicated to finding a cure for Alzheimer’s Disease (even some of the researchers now speak aloud the idea that maybe Alzheimer’s is not really a disease), they get to go to Barcelona, Vienna, and next year Hawaii. What’s not to love about having this conference every year instead of every other year?
Are we truly so close to a breakthrough we can’t let a year go by without all getting together to listen to some of us blow our  own horns? Is the path to a cure narrowing, or is it still a highway and bridge to nowhere? Do researchers have so much money they can afford these “must go to” conferences every year?
Our, my, your National Alzheimer’s Association’s annual education conference that previous shortly followed this conference was axed. Since way before their fairly recent staff downsizing, they have been grossly understaffed, and as the prominence of the ICAD grew, the education conference shrank. The itch to be seen as “the” leader in promoting the search for a cure, the creation of a world without Alzheimer’s seems to be growing. They scratch it with lots and lots of the funds they raise, but of course, it is never enough to make the itch go away.
All this self-promotion by drug companies, researchers, and the Association takes time, effort, staff and dollars away from education, support, psycho/social research and programs - all of which support people who are living with dementia probably of this or that type.
Is this the best plan for the National Alzheimer’s Association? Is this the best use of their all too limited funds, staff, energy, leadership efforts?
I think not!
Surely not! Surely their priorities are out of order!
Richard
It is what we think we know already that prevents us from learning.
Ambrose Bierce: (1842-1914) US journalist.
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What does the National Alzheimer’s Association do well?
And the answer is: Advocacy - on a National and State by State level. Their Washington office has a long and well-earned reputation for getting things done. Although they too have a bias for seeking Federal Funds for Research, they of all the folks, programs, and ideas that define the National Alzheimer’s Association seem to be most open to including the issues of folks actually living with dementia in their agenda, and to a large extent (when measured against the actions of the other programs of Association) they walk the talk, and talk the best walk.
Without “taking sides” in the various issues raised by “the loyal opposition,” the message to Congress remains clear: Congress must pass health care reform that includes long-term care services and supports this year. We are making progress on our health care reform priorities. Current proposals include:
Medicare care coordination services for people with cognitive impairments and their caregivers Long-term care services and supports
What Can You Do Now?
We (You and I) must keep the pressure on Congress.
Join other Alzheimer advocates by participating in local activities with your members of Congress to press our health care reform agenda. Advocates are needed to visit district offices and attend public meetings. Contact your local Alzheimer’s Association chapter.
Here is an update on commitments members of Congress have made to our issues:
230 indicate support to end the two-year waiting period for Medicare
201 indicate support for a $250 million increase in Alzheimer research funding
86 indicate support the creation of an Alzheimer’s Solutions Project Office
67 members indicate support for all 3 issues!
*108 members of Congress have co-sponsored the Ending the Medicare Disability Waiting Period Act of 2009 (S.700/H.R.1708)
I stopped going to the Association’s annual Advocacy/March on Capitol Hill days because I felt it inappropriate, and I felt increasingly uncomfortable telling members of congress year after year we were “on the verge of a breakthrough in research”, “there was now light at the end of the tunnel.” One year we were  especially worried researchers would move away from Alzheimer’s research and follow the money to other diseases if we didn’t give them more to stay in Alzheimer’s research.
These eternally optimistic messages of the soon to be realized vision of a “world without Alzheimer’s” were not, and are not in my mind the most appropriate, the completely accurate, the best message to carry to our leaders. Although they may in the short term be the basis for increasing available federal research dollars, as long as there is such a disproportional (in my humble opinion) amount of research funding on pills and not on people (although they argue unconvincingly that a dollar spent on the ever changing search for a cure is really the best and most appropriate means for them to spend the money they have raised).
Having said that, the day to day trench war that takes place in the committees of Congress must be fought and supported by someone(s) if we are to make our quasi-dysfunctional political work (sort of) for us.
Please call your local chapter and/or email the Washington advocacy office and volunteer to support the “push” for dramatic change to our health care system - especially as it relates to support for people living with dementia.
Thanks.
Richard
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Links
Happy Birthday Bob (the sponge)
Spongebob Squarepants, the fictional charachter of Nickelodeon’s animated television series is 10 years old.
Designed by marine biolopgist and animator Stephen Hillengurg, Spongebob first hit television screens in May 1999. The character, a naive and goofy sea sponge who lives in the fictitious underwater town of Bikini Bottom, has been a favorite for both adults, children, and yours truly and my grandchildren.
Voiced by actor and comedian Tom Kenny, the character has also courted controversy and been seen by some as promoting homosecuality. In the cartoon series, SpongeBob is often seen holding hands with his friend Patrick, something that has promoted him as a gay-icon amongst the homosecual community. However, his creator denies and such link. In celebration of Spongebob Squarepants’ 10th anniversary, Madame Tussands Wax Museum unveiled a wax figure of the character in New York.
The large blue eyes sponge with buckteeth typically wears a white shirt with a red tie and brown square trousers, hence his name “SquarePants.” In his adventures he is joined by other unusual inhabitants of his undersea world including his pet snail Gary, a squid called Squidward and Patrick, a starfish and Spongebob’s best friend. An optimistic and energetic Spongebob is often seen enjoying jelly-fishing and blowing bubbles.
To mark “Spongebob’s” 10th anniversary, Nickelodeon and sister channel VH1 are throwing a massive celebration that would even put a smile on Squidward’s face. As his voice over artist Kenny says, “The show is really born out of nothing more than to make something good and funny and making ourselves laugh.”
Nickelodeon has made millions from the franchise selling everything from SpongeBob macaroni and cheese to SpongeBob underwear. In 2004 feature film raked in 118 million U.S. dollars and DVD sales continue to make record profits for the television company. Last summer it even gained a presidential seal of approval when Barack Obama whilst on the campaign trail told TV Guide that his favorite TV character of all time was the lovable sponge “because ‘SpongeBob’ is the show I watch with my daughters.”
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If you follow no other link, if you read no other article in this issue please chick on this link and read the entire article. Then consider what you think, hope, believe about Alzheimer’s research.
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More than 7 out of 10 people with Alzheimer’s disease live at home, where almost 75 percent of their care is provided by family and friends.6 The remainder is “paid’ care costing an average of $19,000 per year. Families pay almost all of that out of pocket.15
Half of all nursing home residents have Alzheimer’s disease or a related disorder
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Memory loss can be one of the most terrifying aspects of a diagnosis of dementia. Yet the fear and dread of losing our memory make the experience of the disease worse than it needs to be, according to cultural critic, playwright, and my friend Anne Basting. She says, Forget memory. Anne emphasizes the importance of activities that focus on the present to improve the lives of persons with Alzheimer’s disease and other dementias.
Based on ten years of practice and research in the field, she provides specific examples of innovative programs that stimulate growth, humor, and emotional connection; translates into accessible language a wide range of provocative academic works on memory; and addresses how advances in medical research and clinical practice are already pushing radical changes in care for persons with dementia.
Bold, optimistic, and innovative, her cultural critique of dementia care offers a vision for how we can change the way we think about and care for people with memory loss. AFter you have bought and read my book, please go out and buy and read her book.
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Pioneer Network Conference
Pioneer Network Conference Intensives are a one-day  conference in themselves. Experienced guides who can demonstrate with hands-on practical approaches will get to the heart and soul of the subject matter, while giving you the nuts and bolts that you can take home and use immediately. These Conference Intensives are designed especially for YOU - the Pioneer attendee. Be ready for an all day interactive intense learning experience.
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Edna Gates Conference
The 13th Annual Edna Gates Conference on Dementia Care
features innovations in care, new developments in research and
provides a forum for dementia care leaders and health professionals to share ideas. We have a long tradition of offering sessions conducted by leaders in dementia care from the United Kingdom, Australia, Canada, Europe and different regions of the U.S.
SAVE THE DATE: November 2 & 3, 2009
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As many as five million Americans are living with Alzheimer’s. The popular perception of the disease is that people who receive an Alzheimer’s diagnosis are lost to themselves and to those who love them-and that they have no future. But as John Zeisel, an innovator in nonpharmacological approaches to treating  Alzheimer’s, makes clear in this book, this view is wrong. The disease often lasts ten to fifteen years-a time span that definitely constitutes a future. In I’m Still Here, Zeisel shows that during the course of Alzheimer’s, caregivers can have a vibrant and meaningful relationship with people who have the disease.
I’m Still Here focuses on connecting with individuals with Alzheimer’s through their abilities that don’t diminish with time, such as understanding music, art, facial expressions, and touch. Zeisel demonstrates that people who have the disease are highly creative and emotionally intelligent. By harnessing these capacities, and by using other approaches to treatment-such as building memory cues into their living environment, which encourages independent movement and helps eliminate sources of frustration-it’s possible to offer them a quality life with connection to others and to the world.
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Reality: At this time, there is no medical treatment to cure or stop the progression of Alzheimer’s disease. FDA-approved drugs may temporarily improve or stabilize memory and thinking skills in some individuals (but only for some folks and only for a relatively brief period of time. No one knows if the pills are slowing the actual progression of the disease or enabling your own brain to temporarily compensate for the progression of the disease - RT added this part)
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The two major findings in the Alzheimer’s brain are amyloid plaques and neurofibrillary tangles. Amyloid plaques are found outside the neurons, neurofibrillary plaques are found inside the neurons. Neurons are the nerve cells within the brain. Plaques and tangles are found in the brains of people without Alzheimer’s. It is the gross amounts of them that are significant in Alzheimer’s disease.
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· National direct and indirect annual costs of caring for individuals with Alzheimer’s disease are at least $100 billion, according to estimates used by the National Institute on Aging.
· The average lifetime cost of care for an individual with Alzheimer’s is $174,000.
· Alzheimer’s disease costs American business $61 billion a year, according to a report commissioned by the Alzheimer’s Association. Of that figure, $24.6 billion covers Alzheimer’s health care and $36.5 billion covers costs related to caregivers of individuals with Alzheimer’s, including lost productivity, absenteeism and worker replacement.
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Alzheimer’s warning signs include memory loss affecting job skills; difficulty performing familiar tasks; language problems; time and/or place disorientation; poor or decreased judgment; problems with abstract thinking; misplacing things or putting them in inappropriate places; mood, personality or behavior changes; and passivity and loss of initiative. If you notice several of these symptoms in yourself or a loved one, consult a doctor for a complete examination and evaluation.
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Use this link for the 4th Annual National Concepts in Care Conference of the Alzheimer’s Foundation of America Conference in Chicago, Illinois.
SAVE THE DATE: September 24, 2009
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| I once was lost, but now I’m found, was blind but now I see - Living Long(er), Living Better With a Clear and Active Sense of Purpose
I have for sometime realized from my own life experience how important it is to have a sense of purpose, to know what it is, and to strive each day to include activities which enable me to achieve my sense of purpose.
I lost my sense of my purpose when I lost my job, my driving privileges, many of my friends, and to some extent I lost myself for a while. I did not find my new sense of purpose, it found me. Writing and speaking became my sense of purpose, without me having to “figure it out for myself.” I was sleeping longer, watching more TV - more stupid TV, and became clinically depressed.
Apparently, the day after my book came out the world thought I was smarter, more interesting than they had previously thought. Folks started to call me and ask me to speak. I thought more about what it was like for me to live with the symptoms of Alzheimer’s disease. I wrote more. I spoke more. I traveled more. I published more. I met more and more interesting kindred spirits, caregivers, and professionals.
Wham-O I had a new sense of purpose, and many of my activities of daily living now channeled me into feeling a sense of personal achievement and accomplishment, a sense of self satisfaction with myself and my life, a feeling of okayness (remember “I’m Okay, You’re Okay?”
I acknowledge that those of us deeper into the symptoms of dementia probably of this or that type cannot buy themselves redefine a new sense of purpose for themselves. They cannot by themselves create daily activities that help them achieve their sense of purpose. They may need others to assist them in the search. The will need others to find/create activities of daily living that lead them to a sense of self-fulfillment of their sense of purpose.
What follows is a report on some research on the impact a defined, achieved, and achievable sense of purpose has on our lives. This comes from the Rush Alzheimer’s Disease Center in Chicago. They have formed one of the most active, creative, and popular programs for folks living in the early stages of dementia probably of this or that type that I know of in the U.S. of A.
TUESDAY, June 16 (HealthDay News) — If you have a purpose in life — lofty or not — you’ll live longer, a new study shows.
It does not seem to matter much what the purpose is, or whether the purpose involves a goal that is ambitious or modest.
“It can be anything — from wanting to accomplish a goal in life, to achieving something in a volunteer organization, to as little as reading a series of books,” said study author Dr. Patricia Boyle, a neuropsychologist at the Rush Alzheimer’s Disease Center and an assistant professor of behavioral sciences at Rush University Medical Center in Chicago.
“We found that people who reported a greater level of purpose in life were substantially less likely to die over the follow-up period — only about half as likely to die over the follow-up period — as compared to people with a lower level of purpose,” Boyle said. The follow-up period averaged nearly three years.
Boyle and her colleagues studied 1,238 older adults already participating in two ongoing research studies at Rush, the Rush Memory and Aging Project and the Minority Aging Research Study. The participants were all dementia-free when the study began and averaged 78 years old. At the start of the study, the participants answered questions about their purpose in life, rating themselves on different areas meant to measure the tendency to derive meaning from life and to feel that one is working toward goals. The average score on the sense-of-purpose evaluation was 3.7 of a possible 5, Boyle said.
When comparing scores, Boyle found that those with a higher sense of purpose had about half the risk of dying during the follow-up period as did those with a lower sense of purpose. And that was true, she said, even after controlling for such factors as depressive symptoms, chronic medical conditions, and disability. “What this is saying is, if you find purpose in life, if you find your life is meaningful and if you have goal-directed behavior, you are likely to live longer,” she said.
Though much other research has found that having a purpose in life is crucial to maintaining psychological wellness and can be important for physical health as well, Boyle said she believes the new study is one of the first large-scale investigations to examine the link between life purpose and longevity.
The finding follows another recent study, done by others, in which the researchers found that retirees older than 65 who volunteered had less than half the risk of dying during about a four-year follow-up period as did their peers who did not volunteer their time.
What’s the link? Boyle can’t say for sure. But it could be that having a greater sense of purpose helps multiple systems of the body function better, conferring protection in the face of illness.
The findings make sense to Dr. Gary Kennedy, director of geriatric psychiatry at Montefiore Medical Center in New York City. He said he often sees the effects of not having a purpose among older patients. “I see a number of people who have lost that purpose,” he said. “Their health declines.” Boyle said that in future research they hope to find out if people can be inspired to have purpose in life, perhaps by being taught to set goals and work toward them.
SOURCES: Patricia Boyle, Ph.D., neuropsychologist, Rush Alzheimer’s Disease Center, and assistant professor, behavioral sciences, Rush University Medical Center, Chicago; Gary Kennedy, M.D., professor, psychiatry and behavioral science, Albert Einstein College of Medicine, and director, geriatric psychiatry, Montefiore Medical Center, New York City; June 15, 2009, Psychosomatic Medicine
I know some folks, myself included, have never been good at recalling names, but I just don’t forget people’s names - I don’t remember even remembering them. I don’t have a clue. I can’t just cough while I quickly rummage through all the names I can recall starting with Q because that is the letter or sound that has popped into my mind. It is not gone, it is as if it was never there, and amazingly enough I care less and less if I can’t remember it. I now most times just say, “Excuse me but I can’t recall your name - or where I met you - or how I know you - or who you are.” Can you help me out here? Well, can you? Will you?
Some folks assume because I can’t recall their names I don’t know, or for that matter, care who they are. After all, “If you can’t remember my name, can you really remember me?” Of course this is not necessarily true, even for folks who don’t have dementia. However forgetting names produces a stronger emotional response (in me!) when I can’t remember the name of my Grand Daughter, Sister-in-Law, son’s fiancé. Of course, the ultimate name failure is that on one’s spouse (I haven’t crossed that bridge yet.)
Richard
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So what else is new?
Hello
At last, someone(s) in the world is waking up to the fact that all the people who live on this earth are growing older every day. Moreover, proportionally more people are crossing the *”dementia bar.” The point at which your changes of living with the symptoms of some form of(s) of dementia start to rapidly increase.
UNPRECEDENTED GLOBAL AGING EXAMINED IN NEW CENSUS BUREAU REPORT COMMISSIONED BY THE NATIONAL INSTITUTE ON AGING
The average age of the world’s population is increasing at an unprecedented rate. The number of people worldwide age 65 and older is estimated at 506 million as of midyear 2008; by 2040, that number will hit 1.3 billion. Thus, in just over 30 years, the proportion of older people will double from 7 percent to 14 percent of the total world population, according to a new report, “An Aging World: 2008.”
The report examines the demographic and socioeconomic trends accompanying this phenomenon. It was commissioned by the National Institute on Aging (NIA), part of the National Institutes of Health, and produced by the U.S. Census Bureau. It was released today by the Census Bureau.
“The world’s population of people over age 65 is growing rapidly, and with it will come a number of challenges and opportunities,” said NIA Director Richard J. Hodes, M.D. “NIA and our partners at Census are committed to providing the best data possible so that we can better understand the course of population aging and its implications.”
“An Aging World: 2008″ examines nine international population trends identified in 2007 by the NIA and the U.S. Department of State (”Why Population Aging Matters: A Global Perspective”). “An Aging World: 2008″ contains detailed information on life expectancy, health, disability, gender balance, marital status, living arrangements, education and literacy, labor force participation and retirement, and pensions among older people around the world.
“Aging is affecting every country in every part of the world,” said Richard Suzman, Ph.D., director of NIA’s Division of Behavioral and Social Research. “While there are important differences between developed and developing countries, global aging is changing the social and economic nature of the planet and presenting difficult challenges. The fact that, within 10 years, for the first time in human history there will be more people aged 65 and older than children under 5 in the world underlines the extent of this change.”
Highlights of the report include:
— While developed nations have relatively high proportions of people aged 65 and older, the most rapid increases in the older population are in the developing world. The current rate of growth of the older population in developing countries is more than double that in developed countries, and is also double that of the total world population.
— As of 2008, 62 percent (313 million) of the world’s people aged 65 and older lived in developing countries. By 2040, today’s developing countries are likely to be home to more than 1 billion people aged 65 and over, 76 percent of the projected world total.
— The oldest old, people aged 80 and older, are the fastest growing portion of the total population in many countries. Globally, the oldest old population is projected to increase 233 percent between 2008 and 2040, compared with 160 percent for the population aged 65 and over and 33 percent for the total population of all ages.
— The 65-and-older population in China and India alone numbered 166 million in 2008, nearly one-third of the world’s total. Issues related to population aging in the world’s two most populous nations will be accentuated in the coming decades as the absolute number climbs to 551 million in 2040 (329 million in China and 222 million in India).
— Childlessness among European and U.S. women aged 65 in 2005 ranged from less than 8 percent in the Czech Republic to 15 percent in Austria and Italy. Twenty percent of women aged 40-44 in the United States in 2006 had no biologic children. These data raise questions about the provision of care when these folks reach advanced ages.
— Older people provide support to as well as receive support from their children. In countries with well-established pension and social security programs, many older adults provide shelter and financial assistance to their adult children and grandchildren. Older people in developing countries, although less likely to provide financial help to children, make substantial contributions to family well-being through such activities as household maintenance and grandchild care.
The report was prepared by Kevin Kinsella and Wan He of the International Programs Center in the Population Division of the Census Bureau.
Now how will the world’s leaders, their governments, the International Alzheimer’s Society, the National Alzheimer’s Associations/Societies, the local chapters of National Organizations, Regional and State leaders and governments, local leaders, and you respond to this fact of world life?
Stay tuned, I will for as long as I can. And I will continue to stand up and speak out. What about you?
Richard
*”dementia bar” I just made that term up, and I think I will begin to use it more, if I can remember.
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Who can ever forget whats his/her face?
I know some folks, myself included, have never been good at recalling names, but I just don’t forget people’s names - I don’t remember even remembering them. I don’t have a clue. I can’t just cough while I quickly rummage through all the names I can recall starting with Q because that is the letter or sound that has popped into my mind. It is not gone, it is as if it was never there, and amazingly enough I care less and less if I can’t remember it. I now most times just say, “Excuse me but I can’t recall your name - or where I met you - or how I know you - or who you are.” Can you help me out here? Well, can you? Will you?
Some folks assume because I can’t recall their names I don’t know, or for that matter, care who they are. After all, “If you can’t remember my name, can you really remember me? Do you really want to remember me?” Of course this is not necessarily true, even for folks who don’t have dementia. However forgetting names produces a stronger emotional response (in me!) when I can’t remember the name of my Grand Daughter, Sister-in-Law, son’s fiancé. Of course, the ultimate name failure is that on one’s spouse (I haven’t crossed that bridge yet.)
Richard
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Hmmmm. Where have I head these warnings before?
The next health tsunami: Non-communicable diseases
GENEVA: The International Diabetes Federation (IDF), the International Union Against Cancer (UICC) and the World Heart Federation (WHF) called today on the UN’s Economic and Social Council (ECOSOC) to take immediate action to avert the fastest growing threat by non-communicable diseases (NCDs) to global health.
NCDs which include cardiovascular disease, diabetes, cancer and chronic respiratory disease, cause 60% of all deaths globally and 80% of these are in low- and middle-income countries. WHO projects that globally NCD deaths will increase by 17% over the next 10 years. The greatest increase will be seen in the African region (27%) and the Eastern Mediterranean region (25%). The highest absolute number of deaths will occur in the W. Pacific and S.E. Asia regions.
The global call, issued by the three organizations at the meeting of the UN ECOSOC in Geneva, demands five essential actions:
1. Call for an ‘MDG Plus’ containing NCD progress indicators in the 2010 Millennium Development Goals (MDGs) review
2. Support the availability of essential medicines for people living with NCDs
3. Support a UN General Assembly Special Session on NCDs
4. Support the immediate and substantial increase of funding for NCDs
5. Integrate NCD prevention into national health systems and the global development agenda
The UN MDGs state that health is critical to the economic, political and social development of all countries, yet they contain no goals or targets for NCDs, which are the largest threat to health systems. Public health experts are expecting ECOSOC leaders to show the way in confronting this health crisis faced by millions. The emerging epidemic of NCDs is threatening to overwhelm healthcare systems worldwide unless action is taken.
“This tsunami didn’t arise yesterday; it evolved over time and is getting worse. We need a revolution to change the trajectory if we are serious,” stated Dr Leslie Ramsammy, Minister of Health, Guyana at this morning’s WHO Ministerial breakfast meeting. The World Economic Forum’s 2009 Global Risks report supports this with evidence that the incidence of chronic disease is rising across both the developed and developing world. Medical advances and awareness can reduce the risk severity but chronic non-communicable diseases are still the main cause of death worldwide.
My question is why haven’t the Alzheimer’s Associations/Societies of the developed countries raised the same ruckus, demanded the same UN response? Produced the same worldwide interest? Created the same climate of leadership for the worldwide dementia communities? And, where was Alzheimer’s Disease International when this press conference was held?
And why can’t the dementia support community (read that as the National Alzheimer’s Associations) partner with Parkinson’s, Aids, stroke, and other National and international organizations whose disease concerns overlap with a common symptom being dementia? Why don’t Alzheimer’s Associations lead in the formation of coalitions between NPO’s who share at least one common symptom, that being dementia.
We need local, state, national, and world leaders to make essentially the same case. Stand up, speak up, and ask of those who claim to represent us to speak a little louder, a little more often, to speak and work more in unison with each other. And why can’t they all include people with dementia of this or that type on their boards of directors (in potentially impact numbers), on their staffs, working in their offices, and partnering with the organizations in each of their major initiatives involving issues growing out of dementia.
Its fair, its right, its easier than most imagine to accomplish, its doable. It takes leaders to make it happen.
Richard
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| Where’s Richard?
I will be speaking tonight, July 22, 2009, at the Hillel House by Rice University at 7pm. Please contact Morris Dante (morwdan@sbcglobal.net) for more information.
A program that I do not speak at, but frequent fairly often is offered at the Museum of Fine Arts in Houston, TX once a month for people with dementia and their caregivers. The program is called “Looking Together” and there next one is on August 10th at 10am. If you are interested please contact Bridget O’Brien (bobrien@mfah.org) for more information.
I will be speaking for the Alzheimer’s Alliance of Arkansas program August 10th and 11th. On August 10th I will be speaking in Hot Springs from 9:30-11:30am and at the Second Presbyterian Church in Little Rock from 2:30-5pm. On August 11th I will be speaking in Heber Springs from 10-11:30am. Please contact Janet Nelson (janet.nelson@alzark.org) for more information.
I will be speaking at the 9th Annual Pioneer Networking Conference on August 11th,
12th, and 13th in Little Rock, Arkansas. Please contact Karen Stobbe (karenstobbe@charter.net) for more information.
I will be speaking at Autumn Grove Cottage in Pearland, Texas at 5:30pm on August 27th. Please contact Amanda Bailey (amandabailey@autumngrove.net) for more information.
I will be speaking September 12th at Sun City Huntley in Huntley, Illinois from 1-2:30pm. For more information please contact Nancy Turngren (NTurngren@centegra.com).
I will be speaking September 19th at Warwick University in the heart of England. Please contact Sarah Heseltine (SHeseltine@alzheimers.org.uk) for more information.
I will be speaking in Scotland September 21st-23rd. For more information please contact Andrew Ketteringham (Andrew.Ketterinham@
alzheimers.org.uk)
On September 26th my son, Jason, will be getting married to Lori in Houston, Texas.
In October 15th I will be speaking at the Bellingham Dementia Care Center in Bellingham, Washington. On October 16th I will be speaking at “The best ever Alzheimer’s Conference” in Bellingham, Washington. Please contact Josselyn Winslow (josselyn@alzsociety.org) for more information.
I will be attending the 7th Annual Portman Conference in Troy, Michigan on November 2nd for Direct Care Workers. I will be involved in a workshop called Enabling People with Dementia. Please contact Anne Robinson (annerobinson2@sbcglobal.net) for more information.
I will be attending the 13th Annual Edna Gates Conference in Troy, Michigan on November 3rd. I am a keynote speaker on November 3rd. Please contact Anne Robinson (annerobinson2@sbcglobal.net) for more information.
I will be speaking in the state of Colorado from November 30th through December 4th.
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People with dementia were once again given token acknowledgment as sources of information and input as to what their own needs and wants are and how their government should respond to them. We will get a few more crumbs out of this year’s budget, and of course we will share them disproportionately with the researchers who are dedicated to curing something, some condition, some probable types of a disease that they themselves cannot define/discover its cause. 
diagnosis of dementia, probably of the Alzheimer’s type. Therefore: I accept this on behalf of all those who stand up and speak out about what it is like to live with the symptoms of dementia. If we do not speak up and speak out, how will others ever know what it is like to live with the symptoms of dementia? 
I know we share these values: “know each person,” “put the person before the task” and develop “relationships” are the key. Please carry these values into nursing homes, assisted living communities, memory units, and indeed into all of our society. 
communities, especially everyone who has in some form been disabled from being all they deserve to be by virtue of their birth) to define the new culture in which they want to live. It’s about taking their needs and wants as they expressed them, and making them happen with the inhabitants and users of the “new” culture acting as co-agents. 
One morning as the couple was working on their income taxes his Mom came and sat by them and started to “mumble” to herself. It soon became distracting to these two citizens hard at work on their obligation to their country, to file/pay their income taxes. They each repeatedly asked “Mom” to “please be quiet while we are working on our taxes.” “Mom” continued to mumble. Soon it became more than distracting, it became annoying. 
ntribute to my sense of self worth as a result. It is an altogether new volunteer activity for me the doing of which give me purpose and a very good feeling.”
In the study, 24 people with early stage dementia participated in an intensive 40-week program. The intervention included biweekly sessions of cognitive behavioral therapy and support groups, along with three sessions per week of traditional Chinese martial arts exercises and meditation, called qigong (chee-gong) and Taiji (tye-jee). 
