Alzheimers/Dementia in the news

jc141265

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Sep 16, 2005
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Another gene but this one may help scientists understand...

Extract:
Researchers have identified a gene that may raise the risk of getting late-onset Alzheimer’s, the most common form of the disease that typically strikes after age 65. Researchers hope that continued research into the gene and its effects on the brain and memory could one day lead to new drugs that help to modulate the course of Alzheimer’s.

http://www.alzinfo.org/newsarticle/templates/newstemplate.asp?articleid=300&zoneid=10

I found this one interesting as I personally suspect calcium uptake can affect the brain...my reason being that when I went through a unbearable period of suffering acute insomnia that I used to complain was due to a feeling of my brain burning up as if I had had way too much caffeine, taking magnesium tablets which helps with calcium absorption seemed to cure my problems and it was the only thing that worked for me. Could be just my own superstitions...but ya never know... ;)
 

jc141265

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Sep 16, 2005
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If they don't have the APO-E4 gene...

This one is about a new drug, that is currently in Phase III trials (i.e. it passed Phase I and II)...not much hope for those we are posting about now...but possibly hope for future sufferers if they don't have the APO-E4 gene (which a large number of sufferers do)...If you don't know about APO-E4 gene or beta-amyloid plaques then at least these articles might help increase understanding of what these are...

Extract:
Bapineuzumab, an experimental Alzheimer’s drug now undergoing testing, showed promise in mid-stage trials in people with early to moderate Alzheimer’s disease. The drug, made by the drug companies Wyeth and Elan, is aimed at beta-amyloid, a protein that can build up in the brains of those with the disease. The drug is a monoclonal antibody (an immune-system molecule) that clears toxic beta-amyloid from the brain...

Article:
http://www.alzinfo.org/newsarticle/templates/newstemplate.asp?articleid=298&zoneid=10
 

jc141265

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Sep 16, 2005
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Shocking but not unexpected...

Extract:
A surprise inspection by the federal Department of Health and Ageing (Australia) found 10 patients at the 100-bed facility were significantly underweight and there were concerns about nutrition and dehydration.
Two patients, aged 98 and 86 and suffering dementia, weighed less than 25kg...
http://www.news.com.au/story/0,23599,24095483-421,00.html

The last time I was 25kg I was about 5yrs old...

I'm glad at least these inspections were performed.
 
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jc141265

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The heartbreaking long goodbye

Extract:
The old lady stared blankly, not a hint of recognition on her face. Next to her on the bed sat two of her closest relatives - her daughter and grandson.
They hugged her, teased her, squeezed her hand: nothing.
They talked of hobbies, and pets, and adventures from her past: not a word. Then - briefly - the haunted expression grew into a smile and both planted kisses on her pallid skin...
It was nice to read a news article that for once managed to show some real empathy.
http://news.bbc.co.uk/2/hi/health/7525228.stm
 

jc141265

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Margarita

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Feb 17, 2006
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Dr Clive Ballard, of the Alzheimer's Society, said statins were increasingly being touted as a potential cure for dementia.

He said: "The jury is still out on how effective they are, but this study adds to growing evidence that they may have some benefits.

That Just it , its not a cure . another drug that Just meant to slow down the progression of the disease .

Just like the medication they have now & that not even given in the early stages of AZ in UK .

Just high lightening the effects , links of High Cholesterol with VD .
 
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jc141265

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Sep 16, 2005
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Reasons to be concerned about care homes 'care'

Warning: These articles can be distressing to read.

One from Australia:

http://www.canberratimes.com.au/news/local/news/general/claims-resident-left-untreated/1231280.aspx

Extract:
The operators of a Queanbeyan nursing home are investigating claims a resident was left untreated with a broken pelvis, pneumonia and a pressure sore for up to two weeks....The family of 61-year-old Judith Weise claims that the Down's syndrome and Alzheimer's disease sufferer was also treated for dehydration.

One from the UK:

http://www.islingtongazette.co.uk/c...=newsislg&itemid=WeED30 Jul 2008 14:45:13:890

Extract:
AN investigation has been launched after the body of an elderly woman was left in her room at an Islington care home for two days....The council has confirmed that Mrs Staines, a dementia sufferer, died on July 14 but that her body was not taken to the mortuary and that the coroner was not informed until July 16.

Funny how it always seems to be 'dementia sufferers' who are the victims of such negligence...is that because the majority of nursing home residents are dementia sufferers or because these people are powerless to demand good care I wonder??

To avoid being one-sided, I am happy for anyone to post good news stories from homes...
 

Brucie

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Jan 31, 2004
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is that because the majority of nursing home residents are dementia sufferers or because these people are powerless to demand good care I wonder??
or perhaps because there is no family presence, for whatever reason?

Families have some responsibility too. Even very good homes need watching for consistency of provision and require tweaking from time to time.

Clearly if there is no remaining family, or if the family is a huge distance away, then care devolves entirely to the facility in question.
 

jc141265

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But theoretically they shouldn't require family to do the tweaking...
I know practically they do...from my own experience...but one would like to think that putting a loved one in a care home, that they would be safe there...
Even if a person has family their family may not always have their best interests at heart, are we saying that these people don't deserve basic human rights and care that reflects their humanity?
I was just saying to a friend last night (before I saw these stories), how can this kind of care go on, with staff seeing what is going on, and no one do anything?? How can a care worker see that Mrs John Doe is in pain, for two weeks (surely she was still needing bathing and feeding) and just accept that doing nothing is ok??
Is it because they get used to seeing it, is it because they figure that if family can't be bothered why should they be? Is it because they think well they are going to die eventually so why bother? Is it because they consider a person with dementia as a non-person and therefore not requiring the same care?? What is this human condition whereby someone feels it is pointless to say 'this is not right'?
What worries me, is that staff don't say anything and the only reason I can think for their not bothering to protest is because it is more the norm than odd...if it were a rare event, if they weren't used to seeing such horrors, surely they would be shocked and say something. But my fear is, that it is such a normal situation, they just shrug their shoulders and say 'What can I do? What difference can I make?' so they accept it.
 
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Brucie

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Jan 31, 2004
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But theoretically they shouldn't require family to do the tweaking...
absolutely, but theory doesn't always deliver the goods.

In practice, looking at my wife and her current condition and ability to communicate.... her body has become mis-shapen and in the past, had she been seated the way she is now, I would have thought it most uncomfortable for her. The truth is I have no idea now one way or the other - if I try to move her, I can't because her posture is so stiff.

She can't communicate pain in a way that is instantly recognisable as that. I can try, by my close knowledge of her entire being, to interpret things, but I can never be sure that what I interpret is correct.

So how does a care worker know for sure?

Things like pressure sores, and the visible things, of course there is no excuse for. These should be picked up - hopefully - in normal bathing etc.

Clearly, if there is bleeding, bruising - some visible sign - then that makes it clear.

Just yesterday I amended Jan's care plan regarding feeding. I augment the plan fairly regularly, as I identify things that may be helpful for Jan. With staff changing throughout the day, having the amendments available at least may provide some continuity.....if they read them.

I think maltreatment of - anyone - seems to be distressingly normal if we read the papers. Stories of parental treatment of children regularly seem to be worse than care home treatment of residents.

It is a fight on all fronts, I think. :(