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Hello,

Janet Adkins (the first person Dr. Jack Kevorkian (”assisted”) really believed that everyone was going to die who had Alzheimer’s disease. And not just die, like everyone dies. It would be painful,  dehumanizing, something no one should have to live through. It was a death, she believed that should be avoided, if it could be avoided.

She knew it was a fatal disease. So why, she reasoned in her last letter, bother to suffer the prelude when the movements were so awful to live through, and it always ended with pain, suffering, loss of every ounce/inch of humanity and a whimper?

But then again, everyone is going to die who does not have Alzheimer’s disease. Life is a fatal disease/chronic disability/condition!

Is there unbearable pain attached/guaranteed by the diagnosis? Not that anyone has reported, except for others who do not have it and are in psychic pain watching themselves say good-bye to some who is in their minds slipping away. Except for others whose focus groups have told them if you want to raise money for cure research scare the hell into the donors, not out of them, and then all but promise a pill to assure them they won’t go to or through hell - at least not because of their Alzheimer’s disease, because their support and donation now will create a world without Alzheimer’s disease - soon! “We are so close to pharmacologically bringing a part of heaven onto this earth.” they have been telling us for the past twenty years.

There is pain in the hearts and minds of people living with Alzheimer’s disease, but it comes first from without, not from within. There is fear within that comes first from without. There is pain in the hearts and minds of care partners. There is despair about the future. And whence cometh all this pain and suffering? From the disease? Hell NO!

It all starts, not from birth, not from genes, not from between our own ears. It comes first from listening to and watching TV commercials, press releases, relatives, fund raising campaigns, second and third hand reports about what others think/know what is for sure like to live with Alzheimer’s disease.

One organization preaches that folks lose their souls when they are in the later stages of this form of dementia. Have these prophets returned from heaven/hell with a firsthand report? How do we know the condition of anyone’s soul? Apparently, some of those who clearly should know better and are interested in raising funds for research for a cure know for sure. At least sure enough to make a video and show it to lots of folks claiming second hand knowledge of this loss of soul.

A doctor friend of mine just wrote “it’s time to take off the gloves” referring to his own self imposed restraint when responding to a defense of mind/mood altering/smothering drugs given to so many folks living with the symptoms of dementia.

I believe it is time to take off the gloves when addressing the Alzheimer’s myth builders certain claims of a living hell inevitably engulfing those living with the syndrome of Alzheimer’s disease.

We have all been slapped around to long by the myths and stigmas continually promoted by those who should know better, whose personal interests are well served by the consequences of myth making. And they are hitting harder, more often, and damn it with more success. It’s time to tell the other Janet’s, living with the diagnosis, that life, - purposefulness, love, and all the other deeply felt and yearned for human needs are just as alive in the last stages of life/Alzheimer’s/dementia as they were the moment before they heard the words “you have dementia, probably of the Alzheimer’s type” intoned by someone in a white coat who increasingly doesn’t believe what s/he just told you. At least they don’t believe all the myths, stigmas, advice, and pills that come with those words.

I cannot read the minds, hearts, souls of the folks who perpetuate the myths that first caused Janet to consider suicide as a rational answer to the guaranteed pain and suffering that was guaranteed to be her life living with Alzheimer’s disease.

I just don’t understand these fear mongers. Is any cause worth the suffering they are causing/promoting/tearfully announcing? Even if we all believed Alzheimer’s is a disability that can be cured/appreciably slowed down, is it right to knowingly create pain and suffering in some, so some others will not have to experience it?

Damn it. Let’s all stand up and speak out. Let’s name their names, let’s stop donating, let’s stop swallowing whatever they say is best for “us”, let’s replace them. Let’s show the other Janet’s in the world there is a rational, meaningful alternative to ending your life when you receive a diagnosis of probably Alzheimer’s.

It is living your life. Surrounding yourself with an informed, enabling network of care partners. It is believing in yourself. It is ignoring the sentence and conditions others (who for their own reasons) have assigned/defined to you - “a death sentence.” A soul-less, suffering filled existence leading up to not one but two deaths!

Say hello to the “Janets” in your life. Say hello to yourself. Stand up to the blizzard of claimed  breakthroughs, press releases, promises of a better life through chemistry. Speak out! If we all don’t - look who is speaking for us? Look what they are saying? Look at the consequences of their labels, myths, stigmas on people living with the symptoms of dementia and their care partners.

Stand Up! Speak Out! Take off your gloves and let the naked truth speak for itself.

Richard

A friend of mine, and a friend of everyone who lives with the symptoms of dementia, recently presented this at a conference in Belgium. Germany is in the midst of developing dementia-friendly communities. Recently South Korea began a program to educate every one of its citizens (young and old) about dementia. These are the kinds of creative thinking and creative engagements we all need to create and support in our own homes, our own town, and our own country.

Recently my President proclaimed/announced a major step forward in the war against Alzheimer’s disease. Ignoring the fact he still apparently doesn’t grasp the nature of Dementia and it’s many forms, he is forming a committee to write a plan to save our health care system from collapse from the costs associated with the aging of the baby boomer generation (now some are trying to rename it the Alzheimer’s Generation), that is the plan will be written as soon as they find a few dollars to fund the writing of it.

And hands in the audience, please. How many truly believe any plan we write will include, be sensitive to, focus upon the following:

Richard.

Dementia-friendly communities in the society/in Germany

Peter Wißmann

E-Mail: p.wissmann@demenz-support.de
Internet: www.demenz-support.de

Geschäftsführer: Peter Wißmann, Herbert Rösch
Amtsgericht Stuttgart HRB 23057
Sitz der Gesellschaft: Stuttgart
USt.-IdNr. DE 245726688

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What is a dementia friendly community? What does it look like? If you know it, please tell me. I have no definite answer, but I think it’s a good question.

In year 2006 Aktion Demenz has called out to create dementia-friendly communities in Germany. The association Aktion Demenz has resulted from an initiative of the Robert Bosch Foundation. The intention is to look at dementia as an issue that needs to be addressed by the civil society. .

“Dementia is an issue for all members of the society”, that’s the motto. When Aktion Demenz started it had no answer but a question. The question was (and is): How do we transform our villages, cities and communities into better places to live in for people with dementia?

At that time we started we only knew a handful of communities where this question was already being actively addressed by citizens and politicians.

Today we have got a different situation. Under the roof of the concept “Dementia friendly community“hundreds projects have started their work.

This year Aktion Demenz was able for the second time to announce the support program “People with dementia living in the community“. It’s established and funded by the Robert Bosch Foundation. Local projects for a dementia friendly community can get a modest financial support here. About 250 communes and projects have applied and 37 have been awarded a grant. And there are still much more all over in Germany.

Who initiates?

From whom do such local projects start of? There are different approaches:

· The first impulse often comes from professional carers or professional networks.

· Sometimes there are committed citizens who want to do something.

· Sometimes it is the Lord Mayor or another politician recognizing the need to act.

· However, I also know cases in which it was a single person who has taken the first step for example a family member of a person affected by dementia.

Each of these approaches can be successful. But to be honest with you: Sustainable projects depend on a broad alliance of citizens, professionals, politicians and family members etc.

What are activities in the towns and villages?

1. Publicity and awareness raising

Most projects in Germany but also in Belgium or in Austria try to create public awareness in their community. The aims and the objectives of these campaigns are to establish dementia as a topic, but also to focus in people with dementia themselves.

It is crucial to reach those citizens who haven’t come in touch with dementia, yet.

Some Exemplary activities

· Posters and banners all over the city. Motto: In the past, you have helped me, now it’s my turn. We are neighbours.

· Specialized training for police, bank assistants, shop assistants and others. Topic: Understanding dementia.

· Cultural activities like art exhibitions.

· Or a big Dementia Awareness March through the city.

2. Inclusion and social participation

Informing the citizen isn’t enough. What we do need are places and occasions where people with and without dementia can socialise. It is all about social inclusion.

Exemplary activities

exhibitions of art work from people with dementia in public places

• sport activities for and by people with and without dementia
• Public music performances for people with and without dementia
• Some projects address pubs and restaurants in the local community. The objective is to raise awareness about people who seem to be different or to act strange. Are those people welcome in pubs and restaurants? And from our experience the answer is almost always: Yes!

Everybody can do something!

A little town in South Germany, Ettenheim, has come to the conclusion: neither an old nor a person with dementia ought to fall out of the community. The citizens of this village therefore have built up a network of mutual support, and with this aid people with dementia are able to stay in the middle of the community.

3. I speak for myself

All of this is good. Many towns and villages are on their way. But there is still a lot of work to do. My institution, the Demenz Support Stuttgart and other organisations like the Alzheimer’s Associations commit themselves to the aim that people with dementia are encouraged to speak for themselves. What is a dementia friendly community? In Germany we have only just started with this perspective. But I believe: It’s the next task for committed towns and villages to think about ways to involve people with dementia actively in their planning of dementia-friendly communities.

What’s essential?

What is essential if we talk about dementia friendly communities?

1. The dementia-friendly commune must be more than a project managed by professionals.

A few minutes before I said that we need a broad alliance from citizens, professionals, politicians and family members. And I would like to complete: And also from committed people with dementia. All they are indispensable.

2. Not the sick person but the citizen with dementia must be the focus of our perspective.

People with dementia are citizens like every other member of the society! We have to transfer the ideas of the UN-Convention on the Rights of Persons with Disabilities into our countries. We need a change of perspectives!

3. We do need information campaigns and public awareness. However, first of all we need actual inclusion on the spot! There we have to create good ideas!

4.Money is useful, but money is not everything! Many local projects in Germany have shown that you can have a remarkable impact without big sums, as long as other resources are available such as the creativity of the citizens! It is simple, it is creative and it works!

I just read a report on a study of the impact of tickling the whiskers of nude mice. You can find it on www.Alzforum.org. (A summary of it is in today’s Alzheimer’s Daily News) It is a site dedicated to reporting the results of Alzheimer’s cure researcher.  This was the response I posted.

Hello from a person who is trying to grasp exactly what the word Alzheimer’s means. You-all throw it around as a noun, a verb, an adjative, a cause or an effect, a cause and an effect, an early cause and later transforming into simply an effect - and now you write excitedly of stimulating mouse whiskers.

This basic brain research is cloaked, financed, press released as Alzheimer’s Disease cure research. It seeks to understand the most complicated, dynamic, organ known to exist by directing funding and attention to a issue/state/problem everyone sees as systemic, but everyone tries to understand it, to explain it, to cure it, through reductionists eyes, animal models, wishful thinking, the available funds.

Who is going to sort this mess all out? We keep spending more, trying harder, rushing up more and more blind alley’s (many of which seem to be a function of funding availabilty than consesus building and support), and now (again and again) we discover that the more we know the more we don’t know no. You acknowledge contradictions in theories and research, then ignore them and move ahead as if they didn’t exist. You specualte, write another grant application, put your heads next to mouse whiskers or in test tubes and move on - not forward, just on.

It’s obvious there is no existing organization, committee, government, person who will stand up and be a leader of this mess. So what are millions of people trying to live and understand this mess to do? Wait patiently? Buy a “computerized brain stimulating game?” Eat this or that? Walk for a cure? Urge law makers to continue to fund this tower of babel at a faster rate?

When I was first diagnosed the new head of the National Alzheimer’s Association counseled me to “be patient. We’ll get this all figured out” he assured me. Can anyone say we have figured “It” out? Are we closer - years closer to figuring “it” out, defining “it,” charting “it’s” progression in an predictable, science based manner? Did the NIH consensus committee miss something(s) really big in terms of consensus/progress?

Where are the leaders? The leaders of the leaders?

Waiting, now very impatiently by the phone, Richard Taylor, a person living with the symptoms of dementia for 10 years.

Action Alert!

What: call your senator today and ask him/her to support Alzheimer’s priorities in the final version of the Appropriations bill.

Switchboard: 1-800-687-3813

When: Today - Action expected at any time!

Congress will soon make final decisions on funding for Alzheimer research and public health programs.

Your Member of Congress is uniquely suited to help advance our cause.

Please call your Senator Today! They each have an 800 number!

Ask  them to require that 50% of Federal research funds on Alzheimer’s be spent on solving the psycho-social problems the disease creates in and between family members.

Ask  them to assure you this bill will not be just a care giver’s bill, but also contain provisions to directly support the personal needs of people living with dementia

Ask them to support research in ALL forms of dementia, not just Alzheimer’s Disease.

Ask them to support Alzheimer’s priorities as she/he considers the final version of the Fiscal Year 2010 Labor, Health and Human Services, and Education (Labor-H) Appropriations bill.

An estimated 5.2 million Americans suffer from Alzheimer’s disease, including as many as 500,000 who are under age 65. Baby boomers (you and your Senators are probably members of this group!) face a future with AD, bringing the total number of AD patients to 14 million by 2050.

Make sure they know why you personally care about Alzheimer’s issues. Tell them you consider it a moral imperative that they personally join your crusade to change the way our culture defines and treats people with dementia.

Your call can be a difference maker with your call.

Your Senators can be  difference makers with their votes.

We can, we must introduce change today to create better tomorrows!

Questions?

Contact advocate@alz.org

Richard

“I’ll never forget What’s his name?!”

I know some folks, myself included, have never been good at recalling names, but I just do not forget people’s names - I do not remember even remembering them. I do not have a clue. I cannot 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 cannot 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?

Building strong connections in China!

Early on, I set up 50 chat rooms across the world in the 50 poorest countries of the world. I realized everyone there didn’t have an iphone or a lap top, but those who did had no way of using their technology/dependable electricity to connect with kindred spirits, especially when two sprits both were living with the symptoms of dementia and/or were caregivers of such folks.

For over a year, I read the postings and interacted with folks from all over the globe. At first, I thought there would be a wide and deep cultural divide, and we would have different issues, different fears, and different relationship problems. Turned out, once again, I was wrong!

The impact of dementia on individuals, their care carers, their families, their communities is amazingly the same across most cultures I encountered. This is what the Chinese are saying on their new National Dementia web site:

“Being able to truly connect with the person who has dementia can make a great difference to your daily interactions. It can also help in your other relationships with family and friends too!

* Work to build trust and respect - These elements are essential for real connection

* Ask the right kind of questions - Generate meaningful dialogue with open-ended questions that demonstrate you are interested in what the other person has to say.

* Work to increase your awareness and to become an active listener - Give them 100% of your attention in that moment. Do your best to understand the other person’s perspective and thoughtfully consider the intended meaning of their words.

* Read the non-verbal communication - Words are only part of the message and what people don’t say will often tell you more than what they do. Listen with your eyes as well as your ears.

* Speak their language - While most of us understand English, we all speak our own ‘language.’ Know who you are talking with and learn their language.

* Acknowledge their feelings - You don’t need to agree with people to understand them, to respect their point of view or to create genuine connection.”

Good advice I would say for the residents of any country, anywhere on earth facing the issues created by failing cognitive skills. China’s first hotline to counsel elderly just opened in Beijing

www.chinaview.cn

Richard

And, what is it I actually have and what don’t I have?

“Well what if I have Alzheimer’s form and some other forms too? How will any more specificity than what you gave me in your diagnosis help me decide which medications to take, what symptoms I can expect, how I should form, manage and evaluate a treatment plan for myself and my family?” I ask.

“Here is a pamphlet from the Local/National Alzheimer’s Association. Go ask them these questions. I write the same prescription for many of the forms of dementia. I’ll treat your side effects of dementia, no matter what form, the same general way, with the same families of drugs.” s/he answers.

“Well can I, do I ‘probably’ have other forms of dementia too, in additional to the Alzheimer’s form?” I next ask the medical authority I have chosen to help me live with what seems to be a chronic condition (that is another can of worms I won’t open here). “We will just have to wait and see, sometimes as the symptoms progress or new ones express themselves I have to change the diagnosis to some other form of dementia, or recently I have changed the diagnosis to ‘mixed dementias.’”

“Wow, I sure start lots of sentences with ‘well.’ I silently observe to myself.”

“Oh!?” I respond as I walk out of the doctor’s well-appointed office knowing:
A. more than I need to know
B. less than I need to know
C. more confused about what is really wrong
with me than when I first walked in
d. All of the Above.

My answer was d.

“And I paid 20% of a usual and customary charge/a co-pay to know this/what?”

Confusing, is it not. Does it have to be? Why?

This is how Wikipedia defines Alzheimer’s disease - A Mental disorder from brain tissue changes.

Is this what neurologists really mean when they say to someone (such as myself) “You have Dementia, probably of the Alzheimer’s Type?”

Now I ask, “What tissues and what changes produce a mental disorder that has been labeled Alzheimer’s disease?” And so on goes a continuing conversation with others and myself. I am increasingly unsure why I carry on these imaginary conversations in my head. Is it me or the disease talking?

I’m glad someone finally asked me. Here are some reviews from readers posted on Amazon.Com.

By  S.. Artman (Pennsylvania)
Any caregiver of a person with dementia should read Alzheimer’s From the Inside Out. It is actually good reading for anyone. As one would suspect, Dr. Taylor gives you tremendous insight into the thoughts and feelings of someone with Alzheimer’s disease. The writings reinforce the fact that there IS someone inside a person with dementia, a human being first and foremost, that deserves to be treated respectfully and is worth the trouble of doing what it takes to communicate with effectively.

By  E. McDowell (Texas)
Reading all the books I can find on this disease. This book was suggested as a must read at an Alzheimer’s seminar. I am a caregiver trying to understand and care for my mother. This is a very informative book in the eyes of the person with Alzheimer’s. Very eye opening for me. God Bless all who are dealing with this disease and those who love them and want the best for them. Thank you Mr. Taylor and may God bless you and your family.

By  A. Hall (Colorado)-
I have early dementia, fitting the criteria for Alzheimer’s. Like the author, I was a psychotherapist in my 50s when my difficulties became such that I couldn’t work. It’s incredibly powerful to read his words, and see what I would have said if I were only so gifted. Most importantly, I want doctors to read this book, as most of them relate only to dementia as it looks in the end stage, and aren’t familiar with what the early disease process looks like.

By  C. Adams (Nebraska) -
I thought it was an excellent source for where we are at in having our mother recently diagnosed with Alzheimer’s. It wasn’t a lot of fluff, very honest about what to expect now and in the future. This is one’s man account of his memory loss and deficiencies acquainted with the disease. I recommend it highly.

Average Customer Review: 4.8 out of 5 stars (19 customer reviews)

19 Reviews
5 star:    (17)
4 star:    (1)
3 star:     (0)
2 star:    (1)
1 star:     (0)

Amazon.com Sales Rank: #11,252 in Books. It has ranked as high as #400 and as low as #143,789
Popular in these categories:
#1 in   Books > Science > Medicine > Nursing > Mental Health
#3 in   Books > Science > Medicine > Specialties > Geriatrics
#5 in   Books > Professional & Technical > Medical > Nursing > Psychiatry & Mental Health
If you have read the book, I would appreciate it if you would consider posting a short review of it on amazon.com. Thanks.

Richard

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.

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 by 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 will 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 five, 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 is the link? Boyle cannot 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.

Richard

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

If you only read one, two, three, four or more articles

This is the one to read and the link to check out!

I suspect for many of you this is old news (the report came out three weeks ago). but it is very important news. It is very compelling news. It is news worthy of your attention. It is a fine summary of where we are today, what this means, and where we ought to be tomorrow.

It’s objective in a manner only the British have mastered, yet it is direct. It looks at what is through ethical and moral lenses, and at a time like now when we seem consumed looking at health care only through financial and OMG the Socialists are back lenses it is an eye opener and clears the vision of those who prefer to see blurred images of people with dementia, and crystal clear images of dollars and cents.

Please click on one of the connections below. Please consider sending on at least the summary to 10 people you know will be interested in this and ask them to send it on to ten of their involved and engaged friends.

Thanks.

Richard

New developments in medicine and biology raise important ethical issues. The Nuffield Council on Bioethicsis required, in its terms of

reference, to consider these issues. The Council has achieved an international reputation, providing advice that assists policy-making, addresses public concerns and stimulates debate in bioethics.

There is no ‘miracle cure’ just around the corner for dementia. And yet while the number of people suffering from dementia is increasing rapidly, there is a widespread lack of understanding about what people with dementia are capable of doing. This report concludes that we need to do more as a society to enable people to live well with dementia. Currently, they are not getting the support and respect that they need.

This report presents an ethical framework to help those who face dilemmas in connection with the everyday care of someone with dementia. The framework forms the basis for a number of recommendations to policy makers in the following areas:

* promoting autonomy and well-being through an ethical approach to dementia care

* including people with dementia in society

* making decisions about the care and treatment of people with dementia

* dealing with day-to-day ethical dilemmas in care

* recognising the needs of carers

For the full report click here!

For the short guide, click here!

For the executive summary, click here!

For the one page summary, click here!