A new report has just been issued which is outstanding. Lisa, I think you in particular may be very interested in it, given your work on "Principles for a Dignified Diagnosis.".

How do we get the Alzheimer's Association to look into this?

From the Nuffield Council on Bioethics in the UK:

There is no "miracle cure" just around the corner for dementia. And yet while the number of people suffering from the condition 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 report 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,

* Recognizing the needs of caregivers.

See:

http://alzheimers.boomja.com/B...ues-quot-113474.html

There is a one-page summary of the report, a "guide" to the report that describes it in more detail (excellent), an Executive Summary (even more detail), and then the full, 210-page report.

Dear JAB,

Wow, how interesting! I did read the 1 page report and will try to download the full report.

This is a great starting place for all of us. Perhaps this will be the ball rolling??

I'll ask Jaimie who you should e-mail this to.

As usual, JAB, you're terrific!

Thanks. I sure hope others sit up and take notice! And, of course, read this!!!!

I read two comments on the boards today. They underscore this thought.

We work so hard on finding the cure. We need so much more to find ways for us as an afflicted group, affected families and community at large, to treat, support and handle AD patients with an Economy of Cost within the protective shelter of Quality of Care. Until there is a cure this disease “Keeps Marching On”, worsening with each person afflicted, escalating as more of us reach senior years.

RIGHT NOW CARE IS INADEQUATE AND ECONOMICALLY CONFISCATORY!

1. The first comment is that of JAB that starts this thread.

2. The second comment is that of hoopdydoo 10-8-09 in the thread: I Have Alzheimer's or Other Related Dementia Should I Worry that I Worry Less?

After reading both comments my thoughts are these

Do we spend money effort and time waiving testing controls intended to assure safe drugs? Or do we throw caution to the wind?

The reason to throw caution to the wind is simple: “Hell they got it how can you hurt them any more by testing them? They would be the best source of quality control. If they croak or get sick then we know that one doesn’t work. If a person recovers, hey, we might have something there. “

Will this assure finding a cure any more quickly?

Money spent to secure quality of care at economical cost is something that will benefit everyone. The community is the biggest secondary beneficiary of this. Currently crappy care is prohibitively costly. It doesn’t need to be this way. There are too many hungry hands out lining their profit pockets in the care, insurance, treatment and support industries. This can be changed if we are willing to do it.

If we do not, we all suffer except the few that make out like bandits under the current system.

Think about it! Who most directly is benefited by the search for a cure? Us, or the for-profit industries benefiting from the funds we gather for finding the cure? If this cannot be readily answered, the problem is worse than I believed.

i have a question for all ....
a "CURE" is that even possible?
There must be another type of dementia than mine I saw the MRI and fully a third of the brain was scar tissue!!
Without removal ..,how would you replace that?
Just wondering

Great point, Sven! I can't comprehend how any treatment could give us back what we've lost.

My understanding of current dementia research, is to delay onset of serious symptoms, so that we'll die from something else before our dementia starts costing money.

The hope for us would be, that they could slow down our progression, and give us a few more relatively good years.

I used to do what you guys are doing hunting for a cure yada,yada.All it did for me was cause me stress which made things worse,so I quit doing that & just enjoy life now to the best of my ability......I don'r need STRESS OUR WORST ENEMY!!!!

Snowy
I don't think any of us are looking for a cure.
I for one knew that when the diagnosis was made.
I begin to get antsy when the word cure is mentioned.
Alan is of same mind I believe,however stopping the damage where it is or slowing it might be possible.Damage done is damage done. I would like to know the extent and how it is going to affect the rest of my life.

quote:

I used to do what you guys are doing hunting for a cure yada,yada.All it did for me was cause me stress which made things worse,so I quit doing that & just enjoy life now to the best of my ability......I don'r need STRESS OUR WORST ENEMY!!!!

Snowy, Sven is correct - I don't expect there to be a cure for Alzheimer's & its siblings during my lifetime. What is possible, at least for some of us, is slowing it down.

From where I sit, the main reason for early detection is so that we can benefit from the medications while still able to appreciate it.

I can't get stressed to the max anymore, too much Seroquel in me. But I agree that stress is a huge enemy.

http://www.cellmedicine.com/alzheimers.asp
Dude they are talking about regrowing your brain.Curing Alzheimer's and many other diseases.There are more people researching the cure for Alzheimer's right now all over this world than they have ever been. They are getting closer to not only slowing down the process but reversing it.Slowing down would be nice only because that might buy you the time til they do perfect the cure.So don't be so hard on us for having hope.No reason to dash every glimmer of hope we may have,just because you do not know what they have come up with lately.I do love you guys but man you can be selfish and inconsiderate sometimes.
As a chronic, progressive, neurodegenerative disorder, Alzheimer’s disease is a prime candidate for adult stem cell treatment. Indeed, research has shown a variety of promising approaches to the treatment of this disease with adult stem cells.

As already described, Alzheimer’s is characterized by the destruction of neuronal circuitry which is the result of a buildup of beta-amyloid plaques in combination with the tangles that form from the tau protein. An effective treatment for Alzheimer’s disease, therefore, would be one which would prevent and reverse the formation of such plaques and tangles, while also regenerating lost neuronal connections. Thus far, the only therapy that offers the possibility of accomplishing these objectives is stem cell therapy.

At the University of Central Florida, researchers have demonstrated positive results in an animal model in which stem cells were transplanted from a patient’s blood and bone marrow as a treatment for Alzheimer’s disease. When enhanced with bromodeoxyuridine, which becomes integrated into the DNA of cells, the adult stem cells derived from human bone marrow were stimulated to differentiate into specific types of neural cells. With autologous transplantation (in which the donor and the recipient are the same person), the risk of immunological rejection does not exist.

Researchers are also studying the mechanisms by which dormant stem cells already present in the brain may be activated to regenerate local tissue. Potential “switches” within these stem cells have been identified, and a variety of means are being studied for the activation of such stem cells via the appropriate signals. Since endogenous stem cell activation is a noninvasive procedure which utilizes chemicals that specifically target the brain’s own stem cells, this method holds particular promise.

Adult stem cells already have a well-established history in regenerating the various types of specialized neural tissue, and such regeneration has been repeatedly documented for numerous neuropathologies. In the adult human brain, neural stem cells have been found in the subventricular zone and the subgranular zone of the hippocampal dentate gyrus, as well as throughout the adult human nervous system. Researchers have developed effective ways of stimulating the stem cells that already naturally exist in these regions, and transplantation, either with autologous or with carefully matched adult stem cells, has also yielded very positive results.

Research with neuroprotective factors, also known as trophic factors, has shown that the delivery of nerve growth factor (NGF) to specific areas of the brain already affected by Alzheimer’s disease may prevent further degeneration of such neural tissue. Research has also shown that stem cells may be genetically modified in the laboratory such that they may be used not only for their own regenerative properties but also as delivery vehicles for the NGF and for other agents, including genes.

Adult stem cells offer the same pluripotency of embryonic stem cells, but without the danger of forming teratomas (tumors), which remains a serious risk from embryonic stem cells. It is neither necessary nor desirable to use embryonic stem cells in the treatment of Alzheimer’s or other diseases, since a growing number of studies are showing increasing success with adult stem cells. In fact, the only stem cell studies that have ever shown success in the treatment of any human disease have involved adult stem cells, since no study has ever been conducted in which a disease was successfully treated with human embryonic stem cells, although this fact is not generally reported by the media. Ethics and politics aside, adult stem cells are highly preferable to embryonic stem cells purely for scientific reasons. (Please see the section entitled “Stem Cell Primer” for an explanation of the different properties of the different types of stem cells).

Adult stem cell therapy offers a safe and effective treatment for a disease which was previously considered to be irreversible. Not only for Alzheimer’s disease but also for other neurological disorders, adult stem cell therapy provides a healthy and efficacious alternative to drug-related therapies.

quote:

Originally posted by SnowyLynne:
I used to do what you guys are doing hunting for a cure yada,yada.All it did for me was cause me stress which made things worse,so I quit doing that & just enjoy life now to the best of my ability......I don'r need STRESS OUR WORST ENEMY!!!!

Hey, Me Too SnowyLynne. It takes too much effort on my part and I don't understand the technical stuff so it is lost on me.

Lynn

I don't think they will find a cure for me, but since this seems to run in families I would like a cure if my son starts showing signs.

hoopdydoo
We are not trying to rain on your parade,au contrae my friend we are just not holding our colective breaths til it happens.
I am 64 years old going on 19, and I feel I have a fair grip on things yet. i take my meds to hang on to what is left,and feel they are working.
I have just prepared myself for what has to come,unlike some I do not fear death.I am not going to welcome it but ,I plan to live life to the fullest extent possible with what I have left.
That does not include spending all my time searching for a "Cure"
I figure if it comes in time i'll hear about it.
All of these things you speak of are wonderful ,but what kind of Realistic time Frame are we speaking of next week?,month?,year?,5 years ?
get my drift ...
I can't hold my breath that long can you.
So Selfish me no but you my friend are giving people an unrealistic hope you should be ashamed.

quote:

So don't be so hard on us for having hope.No reason to dash every glimmer of hope we may have,just because you do not know what they have come up with lately.I do love you guys but man you can be selfish and inconsiderate sometimes.

Are you for real? Pay attention, Hoopy: Stop trying to manipulate what I have to say. And don't think large volumes of pseudo-science and wishful thinking can take the place of facts.

And Hoopy, do you really want to make this all about taking care of your feelings?

Hoop--you posted something before that I suggested would be better posted in the Medications forum. What you have posted belongs there so those people who are interested can discuss.

Iris L.

Yes guys It is about feelings. I work with alzheimer's patients.
Not guys like you cause,you can still type.Sometimes they linger on for years.After doing this for 5 years I no longer cry when they die.I know they do not fear it.Most have been waiting on it for years.I do not cry for the death but for the disese. It breaks my heart.So I needed help.I found this website and others.I mean come on guys this is the Alzheimer's Association website.We're on the MOVE to End Alzheimer's.This was all I was saying.
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HUGS! Marcus.

Good Point and well taken Iris. .
I am having a hard time seeing any rhyme or reason to the threads,the subject changes form post to post sometimes.
HUGS! Marcus.

quote:

Originally posted by Iris L.:
Hoop--you posted something before that I suggested would be better posted in the Medications forum. What you have posted belongs there so those people who are interested can discuss.

Iris L.

Hoopdydoo
How can I say this,
This site and others like it are for those going through this process.
We try to deal with it day to day .
We relish each other and support each other and Protect each other.
I laud you for your care of others ,but ... you are an observer,and as such can only see one side of the story.
i have so very many wonderful friends on this site that are caregivers ,and in that role they are the best non rewarded and often at odds with Family,doctors etc.
But they soldier on and care.
But even they don't know what we are going through.Some of them are unfortunatly going to end up like their,LO's.
I would like to suggest to you Marcus,
Until you can walk in our shoes you have no right to criticize us or our ideas.
Really though I hope you never have to,I would not wish this on anyone.
At this point our jobs are to be here for each other and help each other get through our days.
Trying to be nioce and you have made this very difficult.
GO AWAY LITTLE MAN YOU BOTHER ME

quote:

ashamed

GO AWAY LITTLE MAN YOU BOTHER ME

I am sorry.I pray you forgive my ignorance.
I will go away.

hoopdydoo, you belong on the Caregiver forum and the Medications forum. Come talk with us there.

Marcus,

Don't go away. Please, go to the caregivers forum. I believe you mean well. Please, get the support you need there.

It's really different having this disease vs caring for someone with this disease. Both are very difficult!!!!

I hope you find the support you need. Thank you for taking care of many of us! Its says a lot about your character.

Good Luck to you.