Archive for October, 2009

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!