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 Re: the connection between UTI's and AD decline
« Result #1 on Oct 23, 2009, 5:46pm »

I didn't read through all of Norbert's posts above but I thought it useful to add:

A UTI may show up in change in color in the uring (darker) or cloudiness in the urine. Don't need tests in that case to know that a doctor visit is in order!
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norbert1
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 Re: the connection between UTI's and AD decline
« Result #2 on Sept 22, 2009, 8:25am »

http://www.nursingcenter.com/prodev/ce_article.asp?tid=812348
Double trouble: When delirium complicates dementia
Nursing2008
September 2008
Volume 38 Number 9
Pages 48 – 54
Denise L. Lyons GCNS, BC, MSN
Shannon M. Grimley CGP, PharmD
Linda Sydnor GCNS, BC, MSN
2 C.E. credits available for this article.

AN OLDER ADULT with dementia faces an increased risk of delirium if she experiences the stress of illness or hospitalization. Superimposed on dementia, delirium can lead to various serious and long-lasting complications, including a decline in her cognitive and physical function, increased length of stay, greater need for nursing care, delayed rehabilitation, and nursing home placement. It's also associated with higher readmission and mortality.1,2

Studies on the prevalence of delirium in people age 65 or older with dementia vary from 22% to 89%,3 but delirium superimposed on dementia may be underreported because it's often unrecognized or pigeonholed as worsening dementia. One literature review revealed that up to 25% of older adults are hospitalized with delirium and up to 56% develop delirium while hospitalized.4

Early recognition of delirium in a patient with dementia and treatment of the underlying cause can help prevent a poor outcome for your patient. In this article, we'll explain how to care for a patient with dementia who develops delirium and discuss what you can do to reduce risks. To illustrate, let's consider a hypothetical case study.

Behavior changes
Eugenia Baker, 88, is admitted to a medical unit from home with a diagnosis of acute change in mental status. Her medical history includes dementia, breast cancer, and ambulatory dysfunction. She lives with her daughter Carol and son-in-law Phil.
At admission, Carol tells you that Mrs. Baker is typically oriented to person and place. Although confused at times, she's generally cooperative. Her appetite over the past week has been poor. About 2 days ago, she became increasingly confused and agitated. Carol describes occasional episodes of hitting and biting and says her mother started seeing things that weren't there.

Once settled in her room, Mrs. Baker is alert but disoriented, agitated, and occasionally combative. When she agrees to let you assess her, she tells you she has pain in her abdomen and her rectum. You ask about Mrs. Baker's bowel routine. Carol isn't sure when her mother last had a bowel movement.

Mrs. Baker's admitting orders include a chest X-ray, ECG, complete blood cell count, basic metabolic panel, and vitamin B12, folate, thyroid-stimulating hormone levels, and urinalysis. When you inform the physician of her bowel history and abdominal pain, he also orders a plain X-ray of the abdomen. Because Mrs. Baker makes repeated attempts to climb out of bed, the nurses place her in a reclining chair next to the nurses' station so they can watch her closely.

Which is which?
Mrs. Baker's acute change in mental status may indicate delirium superimposed on dementia. Health care professionals have difficulty distinguishing the two,5 but the differences are very distinct. (See How delirium and dementia differ for more details.)

* Dementia is chronic. It develops gradually and usually isn't reversible. Early in the course of dementia, short-term memory deficits are common. Over months to years, the patient experiences a chronic, steady decline in cognition, use of language, and functional abilities.

* Delirium is an acute change in mental status, typically due to a reversible medical condition. Hallmarks include acute onset, a fluctuating course, change in cognition, and decreased attention. Treating the underlying cause usually reverses delirium.

Suspect delirium whenever a patient with dementia has an acute change in cognitive status, behavior, or physical functioning. As in Mrs. Baker's case, a family member might tell you she's noticed a big change in a short time.

Prevention is the best medicine
Even in a patient with dementia, delirium may be preventable or quickly reversed. Early recognition of an acute change in her mental status is critical, so frequently assess for red flags to improve the quality of care and reduce complications. Besides assessing mental status, manage your patient's environment and immediately respond to suspected physiologic causes of delirium—most commonly, medications, infection, respiratory tract disorders, and fluid or electrolyte imbalances. (See Common causes of D-E-L-I-R-I-U-M.)
If delirium develops, consider it a medical emergency and immediately investigate the cause.

Zeroing in on causes
Dementia impairs a patient's ability to communicate, so use various strategies and information sources to gain insight into her acute mental changes. These include observation of the patient's behavior, physical assessment, diagnostic study results, patient history from family members, and the medical record. Zero in on the following factors:6

* vital signs
* SpO2 level
* lung sounds
* pain level
* blood glucose level
* urinalysis
* bladder scan to assess for urine retention
* record of bowel movements
* digital rectal exam for fecal impaction
* fluid intake and output
* presence of medical devices, such as a venous access device or indwelling urinary catheter
* current or recent use of medications with psychoactive effects
* new medications or recent dosage changes to current

medications. (See Medications that can trigger trouble.)
Results of Mrs. Baker's urinalysis show white blood cells and nitrites, suggesting a urinary tract infection (UTI). The health care provider orders a urine culture and an I.V. antibiotic to be started after urine is obtained for culture.
The abdominal X-ray indicates a large amount of stool in Mrs. Baker's colon, so he also orders a digital rectal examination. Initial management of the fecal impaction includes disimpaction and oral polyethylene glycol solution (GoLytely). Additional interventions include stool softeners as appropriate, increasing mobility, scheduled toileting, and avoiding constipating drugs.7

Two diagnostic tools for delirium
Diagnosis of delirium is primarily clinical and must be based on careful bedside observation of key features. Two tools can help:

* Confusion Assessment Method (CAM). This standardized tool has a sensitivity rating of 94% to 100% and a specificity of 89% to 95%.8 It's available in long and short forms, as well as a version for nonverbal mechanically ventilated patients. Key features of the short form are acute onset or fluctuating course, inattention, disorganized thinking, and altered level of consciousness. Diagnosis of delirium by CAM requires the first two features plus at least one of the last two. These four features are considered to be best for distinguishing delirium from other types of cognitive impairment.

* NEECHAM Confusion Scale. Based on a structured database derived from routine nursing assessments and interactions with patients, this tool evaluates nine items divided into three subscales: level of responsiveness—information processing, level of behavior, and vital functions. It has the advantage of detecting early stages of delirium and is sensitive to its fluctuations.9
No matter which tool you may use, the earlier delirium is detected and the underlying problem treated, the better the patient's prognosis.

Mrs. Baker's history, clinical condition, and diagnostic test results suggest delirium superimposed on dementia probably caused by her UTI and fecal impaction, two common risk factors for delirium in older adults. Initiating treatment for these underlying causes are important first steps to reversing her delirium.

Pharmacologic management . . . .

Back to baseline
After 4 days of pharmacologic and nonpharmacologic measures to manage delirium and treat her infection and constipation, Mrs. Baker is alert, responsive, and cooperative. She's no longer hallucinating, her appetite is good, and her bowel movements are normal. She denies rectal pain, and her urinalysis is negative. By recognizing her delirium, investigating the causes, and responding appropriately, you've kept her safe and helped her return to baseline mental status at discharge.

Who's at risk?
Predictable risk factors for developing delirium include the following:
* age greater than 70
* history of dementia
* sleep deprivation
* hearing or visual impairment
* dehydration
* severe illness or fractures
* hospitalization
* recent surgery
* immobility
* previous episodes of delirium
* polypharmacy
* alcoholism
* multiple comorbidities.

Common causes of D-E-L-I-R-I-U-M

Drugs
* prescribed, over-the-counter, and recreational
* alcohol withdrawal or intoxication
* polypharmacy (more than four medications)
* effects of anticholinergic drugs, psychoactive drugs (anxiolytics, sedatives, hypnotics, antipsychotics, antidepressants), opioids, steroids
* drug toxicity, drug withdrawal
Elimination
* urinary retention
* fecal impaction or diarrhea
Liver and other organs
* liver failure, hepatitis, cirrhosis
* heart failure, myocardial infarction, hypotension, dysrhythmia
* kidney dialysis, renal insufficiency
* gastrointestinal bleeding, inflammation, infarction, infection
* stroke, cerebral edema, subdural hematoma, head injury, hydrocephalus, encephalopathy, meningitis
* bone marrow disease (anemia)
Infection
* urinary tract or respiratory infection
* sepsis
Respiratory
* hypoxia, pneumonia, pulmonary embolism, chronic obstructive pulmonary disease, asthma
* abnormal arterial blood gases, carbon dioxide, retention, hyperventilation
Injury
* trauma, pain
* stress
Unfamiliar environment
* restraint use, underlying dementia
* hospitalization or change in residence
Metabolic
* fluid/electrolyte disturbance
* dehydration/volume depletion
* abnormal blood glucose level
* elevated blood urea nitrogen or creatinine level
* vitamin B12/folate deficiency
* hypothyroidism, hyperthyroidism
* fever, hypothermia.
Adapted with permission from Christiana Care Health System Delirium Care Management Guideline.

Medications that can trigger trouble
Many drugs can cause or exacerbate delirium. Keep in mind that the following list of examples isn't inclusive and that any new medication added to the patient's regimen can also cause trouble.
* Alzheimer's medications
* Opioid analgesics
* Nonopioid analgesics
* All anesthetics
* Antianxiety/hypnotic agents, sedatives
* Antiseizure drugs
* Antidepressants
* Antihistamines
* Antihypertensives
* Antimicrobials
* Anti-Parkinson's medications
* Antispasmodics (urinary)
* Cardiac medications
* Glucocorticoids
* Muscle relaxants
Adapted with permission from Christiana Care Health System Delirium Care Management Guideline.
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norbert1
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 Re: the connection between UTI's and AD decline
« Result #3 on Sept 22, 2009, 8:23am »

http://www.selfhelpmagazine.com/article/dementia-delirium
Dementia Versus Delirium
By Emily Carton, LISW

Many times in my geriatric practice a child or neighbor will notice that an older person is very forgetful, confused, and disoriented. There is often an assumption that it is just a sign of a dementia such as Alzheimer's and that there is little that can be done. This is not necessarily so.

If one is attuned to the differences between a dementia, which is long term and slow progressing, and a delirium, which has a quick onset and can be caused by other medical problems, often the symptoms can be reversed or prevented from creating further medical and mental damage.

More than once in my practice I have been called upon when an older person suddenly is confused, feeling ill, and has a sudden personality change. For several of my fortunate clients, it turned out that a urinary tract infection was the cause of these symptoms or a medication had been causing severe side effects.

The key factor is acting quickly and finding the source of the sudden change of mental status. Even if the older person is unaware of the change, is belligerent about seeing a doctor, trust your intuition if you feel that something is not right. Sudden changes can indicate a medical emergency.

Dementia: What is it??
Dementia is an acquired loss of intellectual functioning. It occurs over a long period of time. There are many causes of dementia including Alzheimer's disease, strokes, long-term alcohol abuse, and a reaction to medication, Vitamin B12 deficiency, thyroid disease and depression.
Symptoms and duration of dementia can be months to years. Usually speech remains normal. Generally attention is normal, although the person usually shows signs of difficulty in finding the right words. Recent memory is impaired. The older person's motor abilities remain normal until late in the disease. The individual's mood may be apathetic and there can be a loss of impulse control.

Delirium: How is It Different from Dementia?
Delirium is often caused by a sudden change in mental functioning and/or acute confusion. Emphasis needs to be placed on the word sudden. This condition can be extremely serious and require immediate medical attention to prevent any permanent damage.

Some of the hallmark signs of delirium are: a quick onset of symptoms, disorganized thinking, disorientation to time and place, reduced level of attention, drowsiness, increased or decreased psychomotor activity: either apathy which can sometimes be mistaken for depression, or increased agitation. Disturbances in sleep cycle are also a sign.

Delirium can be caused by virtually any medical condition. A urinary tract infection, reaction to drugs, low blood pressure, dehydration, even sensory deprivation for hospitalized patient or with hearing or other impairments that keep them isolated, and alcohol withdrawal are just a few of the many possibilities that can cause this disorder.

Delirium is a true medical emergency. (My note, The delirium caused by UTI only is not a medical emergency requiring hospitalization. However, consult the doctor for treatment.) Immediate evaluation and treatment needs to be obtained. The specific cause of the delirium needs to be found, so the person can be treated.

Approximately 25 percent of people over the age of 70 who are admitted to a medical hospital have delirium. Those suffering with dementia have a higher risk of developing delirium as well.
Differentiating between dementia, delirium and even depression, which can cause some of the same symptoms can be confusing. It is important not to take any of the symptoms for granted. Seek medical advice as soon as you notice a sudden change in a person's functioning. It can make an enormous difference in the outcome for the future.

About the Author:
Emily Carton, LISW is a licensed social worker who works with Elder Options, a private care social service firm in the DC Metropolitan Area. She is also an intern in Bibliotherapy at St. Elizabeth's Hospital in Washington D.C.
Originally published 5/13/98
Revised 9/02/08 by Marlene M. Maheu, Ph.D.
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norbert1
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 Re: the connection between UTI's and AD decline
« Result #4 on Sept 21, 2009, 11:00pm »

MK, I am not sure what happened. Somehow the web addresses got shortened when I copied here. Here is the first article. I am still trying to access the second (not currently available)

http://www.medicalnewstoday.com/articles/121816.php
Inflammatory Response To Infection And Injury May Worsen Dementia
18 Sep 2008
Inflammation in the brain resulting from infection or injury may accelerate the progress of dementia, research funded by the Wellcome Trust suggests. The findings, published this week in the journal Biological Psychiatry, may have implications for the treatment and care of those living with dementia.

Systemic inflammation - inflammation in the body as a whole - is already known to have direct effects on brain function. Episodes of delirium, in which elderly and demented patients become extremely disoriented and confused, are frequently caused by infections, injury or surgery in these patients. For example, urinary tract infections, which are typically bacterial, appear to be particularly potent inducers of psychiatric symptoms.
Until now, there had been little research into the impact of systemic inflammation on the progress of dementia and neurodegenerative diseases. However, with over 700,000 people currently living in the UK with dementia - a figure set to rise with our ageing population - scientists are keen to understand more about the mechanisms behind such diseases.

Now, in a study to mimic the effect of bacterial infection in people with dementia, Dr Colm Cunningham and colleagues at Trinity College Dublin, in collaboration with Professor Hugh Perry at the University of Southampton have shown that the inflammatory response to infection in mice with prior neurodegenerative disease leads to exaggerated symptoms of the infection, causes changes in memory and learning and leads to accelerated progression of dementia.

"Our study clearly shows the damaging effect of systemic infection or inflammation in animal models of dementia," says Dr Cunningham, a Wellcome Trust Research Career Development Fellow.

In previous studies, Dr Cunningham and colleagues showed that infection-induced inflammation can exacerbate nerve cell damage in animal models of dementia. Now, the team has shown that just one episode of systemic inflammation could be sufficient to trigger a more rapid decline in neurological function.

"Doctors and carers need to pay increased attention to protect people with dementia from potential causes of systemic inflammation," says Dr Cunningham. "These include preventing infection, protecting them against falls and carefully weighing up the risk-benefit ratio of non-essential surgery."

Dr Cunningham believes the research may provide clues for helping slow down the progression of neurodegenerative diseases in humans. Although long-term use of non-steroidal anti-inflammatory drugs to treat conditions such as rheumatoid arthritis offers modest protection against the development of Alzheimer's disease, actually treating Alzheimer's patients with these drugs has not had a significant impact on disease progression.

The researchers found that systemic inflammation leads to the production of a protein known as IL-1â by microglia, the brain's resident immune cells, in the hippocampus region of the brain. This region is involved in memory and learning. The protein is known to exacerbate nerve cell damage in stroke. Inflammatory mediators such as IL-1â are routinely produced in the blood in response to inflammatory stimuli and prior studies by colleagues in Southampton have shown a correlation between elevated blood IL-1â levels, recent infection and subsequent cognitive decline.

"The recognition that relatively banal systemic inflammatory events can interact with and exacerbate neurodegenerative processes in the brain opens up potential avenues of treatment for patients with dementia," he says.

Rebecca Wood, Chief Executive of the Alzheimer's Research Trust, commented:

"This is really interesting research leading to a significant step forward in our understanding of dementia. Inflammation has been implicated in dementia for some time, which is why falls are of such concern, but this also shows that the dementia is increased by another common problem of ageing - urinary tract and other infections. It also demonstrates how important it is to lower our dementia risk through maintaining good overall health.

"In the UK, 25 million of us know a close friend or family member with dementia, but research into the condition is severely underfunded. We need far more research like this if we are to reduce dementia's impact on our society."
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 AuthorTopic: Understanding the Dementia Experience (Read 47 times)
MaryKathryn
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 Re: Understanding the Dementia Experience
« Result #5 on Sept 20, 2009, 2:46pm »


Sept 18, 2009, 9:04am, norbert1 wrote:
This is an excellent read, recommended by many caregivers

Understanding the Dementia Experience
by Jennifer Ghent-Fuller (28 pages)
http://www.alzheimercambridge.on.ca/Unde....0Experience.pdf




Hi Norbert, this is really one of the best reads on AD and I am going to read it for my own benefit more than a few times so that it will really sink into my brain and heart . . . I am also going to share it with our adult kids and to two of my most supportive friends who really care lots about my DH and me.

Many thanks for this fine article . . . I shall also give the team leader at Cherished Place who will conduct the new Alzheimer Support Group meetings a copy.

Wishing you the best always,

MK




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MaryKathryn
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 Re: the connection between UTI's and AD decline
« Result #6 on Sept 20, 2009, 2:35pm »


Thanks Norbert for the informative information of this post.

However, I tried clicking on to the high-lighted websites but a

message comes on that the "website cannot be found."


Never the less you have given us a whole lot of information on

this thread already. Many thanks,


Always grateful to you for any/all information you share with us,

MK





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norbert1
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 the connection between UTI's and AD decline
« Result #7 on Sept 18, 2009, 9:33am »

Added to misc dementia topics pt 2

What's the connection between UTI's and AD decline?

Q - I see all over the message board when a patient has a downward turn or "episode" of any kind, many many people refer to UTI's as being a possible underlying cause. What is the connection? And why don't we see this kind of connection being made with the common cold or the flu which seems to be a more frequent occurrence.

A - The elderly in general and especially those with dementia (because of lowered level of cognitive reserve) are susceptible to delirium. In dementia, UTIs cause a mild form of delirium that produces a decline in function and increase in confusion.

de•lir•i•um. A temporary state of mental confusion and fluctuating consciousness resulting from high fever, intoxication, shock, or other causes. It is characterized by anxiety, disorientation, hallucinations, delusions, and incoherent speech.

Google - dementia UTI delirium

Inflammatory Response To Infection And Injury May Worsen Dementia
http://www.medicalnewstoday.com/articles/121816.php
Systemic inflammation - inflammation in the body as a whole - is already known to have direct effects on brain function. Episodes of delirium, in which elderly and demented patients become extremely disoriented and confused, are frequently caused by infections, injury or surgery in these patients. For example, urinary tract infections, which are typically bacterial, appear to be particularly potent inducers of psychiatric symptoms.


Double trouble: When delirium complicates dementia
http://www.nursingcenter.com/prodev/ce_article.asp?tid=812348

Dementia Versus Delirium
http://www.selfhelpmagazine.com/article/dementia-delirium
“Delirium can be caused by virtually any medical condition. A urinary tract infection, reaction to drugs, low blood pressure, dehydration, even sensory deprivation for hospitalized patient.”

A comment on one line in this article. -- “Delirium is a true medical emergency.” -- The level of delirium caused by a UTI is not as severe as when caused by a more major illness and would not rise to the level of a “medical emergency”, but would produce a change of behavior. . . . However, a bladder infection can move up to the kidneys, where it can get into the blood stream creating sepsis. That IS a life threatening medical emergency.

Look at it another way, anything that produces stress on the body of a person with dementia will cause an increase in confusion and possible behavior issues. UTI, pain, dehydration or exhaustion will produce such results.

The complicating issue in dementia is that we can tell when they have a fever (from flu) or a cold, but they cannot or do not tell the caregiver that they have a UTI. And in dementia, they can have a silent UTI which does not exhibit the traditional symptoms.

Treating UTIs

Silent UTIs usually don't have any symptoms; no pain, burning, frequency or odor, but they are there. The only symptoms for many of our loved ones are abrupt changes in behavior, cognition or funcition.

One caregiver reported, in later stages, "my mother got these silent UTIs about five or so times a year. Her only symptom was that abrupt change in behavior or cognition. Once treated with the appropriate antibiotic, she was back to her usual level of function."

The facility is the one that should test the urine. A dipstick will be done first to check for bacteria. You can also test at home. The AZO test strip has two windows and is most accurate if the urine is held for 12 hours. Even if not held for 12 hours, the first window will still work properly to test for infection. If a UTI is present, then a lab culture will be done to check for the most effective antibiotic. The laboratory culture takes about three days to come back.

In the meantime, the MD usually treats the patient empirically with a broad spectrum antibiotic. If that antibiotic turns out not to be effective by culture, the antibiotic will be changed.
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norbert1
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 Understanding the Dementia Experience
« Result #8 on Sept 18, 2009, 9:04am »

This is an excellent read, recommended by many caregivers

Understanding the Dementia Experience
by Jennifer Ghent-Fuller (28 pages)
http://www.alzheimercambridge.on.ca/Unde....0Experience.pdf
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alice
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 Making Your Home Safer For a Loved One With AD
« Result #9 on Sept 2, 2009, 9:40pm »

http://abcnews.go.com/Health/AlzheimersNews/story?id=7517781&page=1
Several pages to view with helpful advise and also videos pertaining to the disease.

A lot of valuable sites at the bottom of the page that will help you become a better care giver and give you more understanding of the disease and how it effects your loved one, et..
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[image] I am no longer able to hold your hand my beloved but I cherish the remembrance of your hand in mine...and the wonderful person that touched so many lives with joy. : )


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 AuthorTopic: FAQ39 - New to Alzheimers? Caregiving Basics (Read 222 times)
alice
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 Re: FAQ39 - New to Alzheimer's? Caregiving Basics
« Result #10 on Aug 12, 2009, 9:39am »

Bringing this important forum back up for our new members.
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[image] I am no longer able to hold your hand my beloved but I cherish the remembrance of your hand in mine...and the wonderful person that touched so many lives with joy. : )


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 Re: 2009 Australia Tour
« Result #11 on Aug 11, 2009, 10:08pm »

Hey Neo,

Larry and I are trying to get tix for London, Ontario 10-1-09.
Wanna meet up there?

I can ALMOST guarentee, no blizzard this time. LOL
Am looking forward to seeing Mr ALPHA himself AND eating at the Hungarian Restaurant.

Oz is a No Can Do for us, but hope it works out for you!


You probably have seen this > youtube from Kansas City, MO Aug 8, 2009 PRANK with Taylor Swift.
Anyone that is a KISS fan will really enjoy this, too.


http://www.youtube.com/watch?v=6cR58HQDMWM


Hugs! Ruth


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 Re: Help For Your LO Getting In And Out of a Vehic
« Result #12 on Aug 5, 2009, 9:13am »

I got Mom a swivel seat (imagine a padded lazy susan) and she said it was too uncomfortable to use in the car. FWIW.
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 Re: Help For Your LO Getting In And Out of a Vehic
« Result #13 on Aug 2, 2009, 11:04pm »

check these sites out.
http://www.bruno.com/bruno-turning-autom....-+auto+products
http://www.metacafe.com/watch/1342993/turny_outward_swivelling_car_seat_lift/

Zene
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 Help For Your LO Getting In And Out of a Vehicle
« Result #14 on Aug 2, 2009, 8:49am »

A video of using a Step-Quad Cane/ Swivel Seat/Handy Bar/Car Caddie for those with handicaps. Hit video underneath the pictures at top of page.

http://www.dynamic-living.com/product/swivel-seat-for-the-car/#name_videoBox

....................................................................................................
At the site below please view the swivel seat as well as the door frame strap. Similar to the one above but other aids that might be beneficial for the care giver and their LO as well.

http://www.activeforever.com/p-267-car-c.....aspx?cs=A14004

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Neo
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 Re: Veterans Aid and Attendance and other VA benef
« Result #15 on Jul 23, 2009, 5:44pm »

To update, the check for the original benefit, including back-pay, arrived the second week of June. The stipend checks appear to be arriving on schedule, if July is any indicator. My three years of self-flagellation appeared to have paid off. I bought mom some new slippers and some tops. Still looking at cremation plans but should have something in the next month. Everything in due time :)

If anyone needs help with the process, feel free to ask. I think I dealt with ever last nuance.

Neo
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 Re: Veterans Aid and Attendance and other VA benef
« Result #16 on Jul 23, 2009, 3:20am »

I agree with Neo





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alice
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 Memory Walk For AD
« Result #17 on Jul 5, 2009, 11:44am »

--------------------------------------------------------------------------------
http://www.alz.org/memorywalk/overview.asp
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MaryKathryn
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 Re: 2009 Australia Tour
« Result #18 on Jul 2, 2009, 9:54am »


Hi Neo . . . Looking forward to the 2009 Autralia Tour sounds like just the ticket to buoy your spirit!

With a little luck and spunk you will be able to get there and have a great time. ;D Just what you need to get a new slant on life. :D

Best wishes always,

MK


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"The whole idea of compassion is based on a keen awareness of the other.... The whole purpose of life is to live by love."

~ Thomas Merton







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BoysMom3
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 Re: See thingy read, see Jane read, see Sally read,
« Result #19 on Jul 1, 2009, 12:45am »


Yes, it's sad.

We have a son with ADD, language-based learning disabilities, and he is slightly dyslexic.

It's so much like Alzheimer's; NOTHING we would ever choose to have...
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~Merry

Only child. Daddy is 87 and doing his best to stay involved in Life. In April 2006 we made the most difficult decision ever; it was time to place Mom in a nursing home. Daddy and I just could not give Mom the care she needed and deserved. We visited several times a week. We lost Mom on 8-18-09.

DH and I have 3 sons (20, 23 & 25), 1 DIL (26), and a precious year-old grandaughter, Bayleigh.


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 Re: See thingy read, see Jane read, see Sally read,
« Result #20 on Jun 30, 2009, 9:32pm »

I agree with Bobute








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Neo
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 2009 Australia Tour
« Result #21 on Jun 29, 2009, 8:49pm »

Looks like Keith will be back downunder for a week-long tour in mid-December, 2009.

The tour starts in Melbourne at Rod Laver Arena on Saturday 12 December, before travelling north to Wollongong's WIN Entertainment Centre on Monday 14 December. Next on the itinerary is Sydney's Entertainment Centre on Wednesday 16 December before finishing up in Keith's home state, performing at the Brisbane Entertainment Centre on Friday 18 December. Tickets for the Sydney show go sale through Ticketmaster, and all other shows through Ticketek at 9am on Tuesday 30 June.

Now to figure a strategy to get there :D

Neo
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Purple Pat
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 Re: Veterans Aid and Attendance and other VA benef
« Result #22 on Jun 5, 2009, 10:44pm »

The check should come soon...yours was a bit more complicated then dads it appears...dad started receiving benefits almost one year to the day of my application! Good luck..it was well worth it for dad.
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 Re: Veterans Aid and Attendance and other VA benef
« Result #23 on Jun 5, 2009, 8:31pm »

Well, about 18 months have passed and I'll outline the significant parts.

1. In October 2008, the VA finally recognized the validity of our claim and approved compensation and benefits, but, wait, now they have ruled my mom incompetent so she can't receive benefits; someone must be appointed to receive them for her. Wow, rocket science. So, more forms are needed for me to apply to become "fiduciary". Tic-toc.

2. In December 2008, I get a phone call from a nice lady (shocking change from prior phone contacts) who is a field examiner for the VA. She arranges to meet me at the nursing home and interviews myself and my mom and collects some further documents and requests a few more. Documents, documents.... She also spent about 2 hours going through my mom's medical records there.

3. February, 2009 - I receive a "EVR" form from the VA's financial center in Minnesota to fill out. I do so, and return it, thinking benefits will start soon. Wrong...

4. May, 2009 - I receive the EVR form back stating it's incomplete due to the length of time between filing the claim and it being approved. Well, duh, didn't they know that? Anyway, they required an itemized listing of every medical claim from October 2006 to current, as well as income and assets broken down into certain periods. This took me about 6 hours to complete. Hundreds of records. I'm starting to think suicide might be a less painful action than dealing with the government.

5. Late May 2009 - I get a call from a lady at the financial center to finalize a few income items. A week later I receive an updated determination of benefits and retroactive compensation. OK, cool, now where's the effing check. Mom's already had one close call with death and I'm liking to buy her a decent cremation and get some more clothes and pay myself back for all the money I borrowed to take care of her while waiting on her benefits. Sounds familiar, I bet, to anyone who has dealt with the VA.

Hopefully, the next update will be a nice one :)

Over and out

Neo
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alice
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 Caregiver's Guide to Understanding Dementia Behavi
« Result #24 on Jun 1, 2009, 9:04pm »

Caregiver's Guide to Understanding Dementia Behaviors

http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=391&expandnodeid=1853

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 Wanted: People involved in campaigning
« Result #25 on May 18, 2009, 3:59am »

WANTED!
People with dementia involved in trying to make a change


The Bradford Dementia Group at Bradford University are looking for 25 people across the UK who are interested in bringing about change or who speak out or campaign on issues which matter to them.

We are looking for a variety of people: it may be that you are involved in community events, or that you write letters to newspapers, sign petitions or speak out in public. Maybe you keep a ‘blog’, have volunteered your skills to get better services or are involved in campaigns on a local or national level.

Whatever your level of involvement, we are interested in finding out why you get involved and how your activities affect you, your family and your life in general. The project will take place from August 2009.

To volunteer you need to:

- Have a dementia diagnosis
- Be interested in changing things, speaking out or campaigning
- Be prepared to talk to a researcher
- Be prepared to keep a diary for up to one month; you can keep a written, photo or audio diary - whichever suits you best

We are also looking for 5 people with dementia who are interested in ‘piloting’ the materials we are going to use to make sure we have got them right. We would like to try them out and get feedback on them. The pilot will last 2 weeks and will take place in June 2009.

If you are interested in finding out more please email us on socialchange*bradford.ac.uk (replace the * with an @ in the email address, modification made on this site to stop spam)
or ring EJ on 01274 236 494 or Ruth on 01274 236 468
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ridzene
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 Re: Signs of pain
« Result #26 on May 17, 2009, 10:03am »

on the top for Linda
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 Re: HBO
« Result #27 on May 15, 2009, 8:08am »

I saw them all on my computer very well done......
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 Re: HBO
« Result #28 on May 11, 2009, 8:29pm »

I did not Lynn - but our daughter is taping them for us as my computer doesn't show them very well.....so I will watch after Tuesday night. From what I have read on the sites, tho' alot of people have thought that they were very well done.

Mikeswife/Dougsmom
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 Re: HBO
« Result #29 on May 11, 2009, 5:20pm »

Did any of you see this? You can get it on the HBO site & watch it.......
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 HBO
« Result #30 on Apr 27, 2009, 6:33pm »

On May 10th there a 4 part series on HBO about Alzheimer's.....
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gnendl5
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 Re: Clinical Trial for Alzheimer's
« Result #31 on Apr 23, 2009, 3:35pm »

Thanks for the info Becky and welocme to the group. I saw this in our local papers. Unfortunately my husband is too old to partake. I have attempted over the past 6 1/2 years to get him into different study groups and some little thing always kept him out. I hae tried tho.


hugs
greta
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my husband has had AD for 6 years, early stages. I was widowed twice before but this is the toughest. .


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 Clinical Trial for Alzheimer's
« Result #32 on Apr 23, 2009, 1:49pm »

I wanted to pass along information about the ICARA (Bapi) study.
Its goal is to explore if an investigational drug, called bapineuzumab, can help slow the progression of Alzheimer's Disease. There is no charge to participate, and a medical team - including a physician - will monitor participants throughout the study. See www.icarastudy.com for more info.

It's important to consider participating in clinical studies, such as ones like this that test potential new treatments, as they are the best chance we have for fighting this disease.
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 Re: FAQ48 - Books about Alzheimers
« Result #33 on Mar 26, 2009, 8:15am »

I copied this from a thread I started here:
http://alzheimers.proboards32.com/index.....lay&thread=9096

Book: CONTENTED DEMENTIA from UK
« Thread Started on Jan 28, 2009, 11:49pm »

--------------------------------------------------------------------------------
Hey dear friends,

CONTENTED DEMENTIA by OLIVER JAMES.
Published 2008, United Kingdom.
Recommended by the ALZ Assoc, United Kingdom.

286 pages (Wish it were longer!)

The Brits are ahead of us on this one.
Available thru the US internet.
Cost: about $26 including shipping.
I bought the book and find it a goldmine of info.
(It is not available in any US library collection.)

This book is the best tool I have found yet.
I have lots of "homework".
Outlines plans to help caregivers get into the Dementia world.

It also validates what I knew was right for my Mom, and it gives me a plan to close up the gaps and problems I am dealing with now and will continue to have.

Not easy decisions we make for LOs as things continue to change and progress. Whether caring for LOs at home or whether they are now living in a facility, this book will help.

Written by a Child Psychologist, it is based mostly on Penelope Garner's theories/methods in caring for her mother.

Penny's 3 Commandments:

1. Don't ask questions
2. Learn from them as they are experts in their disability (get in their world)
3. Always agree with everything they say, never interrupting them.

Starting with that, Penny has Themes you use as Tools to deal with situations and problems.

Brits are having a mini revolution, slowed down only by limited funds, limited resources. The Royal College of Nursing found the SPECAL (Specialized Early Care for Alzheimer's)clients take fewer drugs and suffer less distress. It benefits people in all stages of dementia.

Best "dementia" investment I made besides the large clock with date, weekday & time.

NOTE:
My 2 brothers and I say: RUN! BUY THIS BOOK!!!


This is a NEW Book and only limited copies are available in US.
No, US Library currently has this book.

I asked my local library to purchase it and the answer was a general, NO.
They avoid purchasing "medical" type books outside the US since they may contain info on drugs or procedures that are NOT accepted, or NOT available by the US medical community or US government.

Happy reading!
Ruth
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alice
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 FOR OUR NEWCOMERS..BENZODIAZEPINE MEDS
« Result #34 on Jan 14, 2009, 11:25am »

Please make a copy of this and of Norbert's thread so you can be your best advocate for your loved one and know what meds to protect them from..may God bless.
~.~.~.~.~.~.


Side effects of Bezodiazepines meds..some are Xanax, Valium, Activan, Klonopin

From Web MD: most commonly reported were drowsiness, fatigue, muscle weakness, and ataxia. The following have also been reported:

Central Nervous System: confusion, depression, dysarthria, headache, slurred speech, tremor, vertigo

Gastrointestinal System: constipation, nausea, gastrointestinal disturbances Special

Senses: blurred vision, diplopia, dizziness

Cardiovascular System: hypotension

Psychiatric and Paradoxical Reactions: stimulation, restlessness, acute hyperexcited states, anxiety, agitation, aggressiveness, irritability, rage, hallucinations, psychoses, delusions, increased muscle spasticity, insomnia, sleep disturbances, and nightmares. Inappropriate behavior and other adverse behavioral effects have been reported when using benzodiazepines. Should these occur, use of the drug should be discontinued. They are more likely to occur in children and in the elderly.

Urogenital System: incontinence, changes in libido, urinary retention

Norbert's thread:
http://alzheimers.proboards32.com/index.....lay&thread=7158
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Neo
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 Re: Forum - HomeAtLast *Update*
« Result #35 on Dec 11, 2008, 10:26am »

Be aware that the password for access to this forum has been changed. PM Alice to acquire the new password

Neo
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 FAQ39 - New to Alzheimers? Caregiving Basics
« Result #36 on Sept 11, 2008, 11:02pm »

An excellent Article that lays out various issues of caregiving for a person with Alzheimer’s is the following article:

As Memory Fades: The Caregivers Challenge Begins

Google the title and click on the one located at - centeronaging.uiowa

http://www.centeronaging.uiowa.edu/archi....ory%20fades.pdf

FIRST A WARNING ---
There are a few things that caregivers are never warned about at the beginning of the disease, and they are a total surprise when they happen:

over 50% have problems with depression
20% have problems with anxiety
Some have problems with psychosis – suspicion, paranoia, delusions and hallucinations. It usually takes a good dementia doctor to treat these properly
Most have agitation – especially in the nursing home
A few have problems of aggression – pushing, hitting, etc
A very few – have problems with violence. This can be compounded by untreated psychosis.
The person who is pleasantly confused throughout the course of the disease is rather unusual.

I MUST FURTHER WARN YOU that the document I am recommending has a section on violence - do not be scared by this. This is put there as a precaution. A VERY FEW people with Alzheimers have a period where they can get violent if they do not have appropriate medical supervision and treatment. This rarely happens, but because the risk is so great, it is discussed in this brochure. (When the person made this brochure, she compiled a number of shorter writeups, and she decided to include this one.) Do not believe that this is likely with your Family Member.

--------------------------
Issues covered in this article:
The seven stages of dementia
Fatigue
Coping with change
Overwhelming stimuli
Loss of meaningful activities
Creating too much demand
Illness
Coping with problem behavior
Safety
Special problems of dementia
• Bathing
• Wearing the same clothing
• Hiding things
• Fear of abandonment
• Aphasia (problem of language and speach)
• Made up stories
• Repeated questions
Coping with agitation, aggression and violence
Taking care of yourself
Legal/Financial affairs

--------------------------

One thing mentioned in this article needs to be emphased - legal and financial issues require early planning.

Caring for a person with dementia can cause many financial difficulties - If not now, then down the road. A very smart move is to visit an “Elderlaw” attorney. He can help with financial planning. (If you don’t have this type of lawyer in your area, an alternative is one who specialized in probate/estate planning.) The most important aspect is explaining and making arrangements in a manner that will produce the best outcome when Medicaid is needed. With the constant changes in this area, it is best to get this information from someone who specializes in this area; not from the family attorney. This planning is best done well in advance; not just before Medicaid is needed. He can also explain the record keeping that is needed for the eventual Medicaid review.

Shortly after diagnosis, it is CRITICAL to visit a lawyer and have the following documents prepared (why not have these documents prepared by an elderlaw attorney and get an explanation of the Medicaid issues.)

Essential documents for dementia care -
- POA for health
- POA for finances. It must be a “Durable” POA for finances (still in effect after disability)
- Living Will

-------------

Other recommendations for the beginning caregiver - Educate yourself. This can reduce the level of anxiety - instead of just waiting to se what happens next.

Your local Alzheimers association can be a valuable source of information and help, with -
- informational brochures
- referal to dementia doctors and lawyers who know how to deal with legal issues of dementia
- Training classes. Most chapters have a session called dementia 101.
- In home assessments for safety and caregiving skills
- support groups.
- Telephone help lines, both at the local and national organization.

go to
www.alz.org
type in your zip code to find out the location of the chapter for your area.

-----------------

A Series of articles on Alzheimers Caregiving (recommended by Alice)

TIPS FOR CARING FOR A PERSON WITH ALZHEIMER'S DISEASE
http://www.helpguide.org/elder/alzheimer...._caregivers.htm

------------- another article ------------------

TEN STEPS TO GETTING STARTED AS A CAREGIVER
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=392

By Family Caregiver Alliance

Whether you have moved into the role of caregiver suddenly or gradually over time, you may feel alone, unprepared, and overwhelmed by what is expected of you. These feelings, as well as other emotions—fear, sadness, anxiety, guilt, frustration, and even anger—are normal, and may come and go throughout your time of providing care.

Although it may not seem possible, you will also experience the unanticipated gifts of caregiving—forgiveness, compassion, courage—that can turn hardship into hope and healing.

Each caregiving family faces unique circumstances, but some general strategies can help you navigate the path ahead. As a traveler in new terrain, it is wise to educate yourself as best you can about the landscape and develop a plan accordingly, with the flexibility to accommodate changes along the way. Below are 10 steps to help you set your course.

Step 1. Lay the foundation. Establishing a baseline of information lays the groundwork for making current and future care decisions. Talk with your loved one, family and friends: What was Mom “normally” like? How has she changed? How long has she been forgetting to take her medicine? When did she stop paying her bills? Answers to questions such as these help create a picture of what is going on and for how long. This basic information not only gives you a realistic view of the situation, but also provides an important foundation for professionals who may be called in to make a more formal assessment.

Step 2. Get a medical assessment and diagnosis. It’s very important for your loved one to get a comprehensive medical exam from a qualified health care team that reviews both physical and mental health. Many medical conditions such as depression and medication interactions can cause dementia-like symptoms. Often these conditions can be reversed if they are caught early enough. Additionally, new drug treatments for diseases such as Alzheimer’s and Parkinson’s diseases may be most effective in the early stages of the disease. A confirmed diagnosis is essential in accurately determining treatment options, identifying risks and planning for the future. Take your loved one to a memory disorder clinic, if one exists in your community, to get an accurate diagnosis.

Step 3. Educate yourself, your loved one, and your family. Information is empowering. Talk to doctors, health and social service professionals, and people going through similar experiences. Read books and brochures. Do research at the library and on the Internet. Learn how the disease progresses, the level of care that will be needed, and what resources may be available to help. Keep a notebook and a file folder of information you collect that you can refer back to when needed. Knowledge will increase your confidence and may reduce the anxiety and fear that many of us feel in the face of the unknown. (See the FCA Fact Sheet on Community Care Options for more information about finding help in your community.)

Step 4. Determine your loved one’s needs. Care assessment tools include a variety of questionnaires and tests designed to determine the level of assistance someone needs and establishes their personal preferences for care (e.g., bathing in the morning rather than the afternoon). Each situation is different. While one person in the beginning stages of Alzheimer’s may need assistance with grocery shopping and bill paying, another in later stages may have problems with dressing, eating and hygiene.

Assessments usually consider at least the following categories:

Personal care: bathing, eating, dressing, toileting, grooming

Household care: cooking, cleaning, laundry, shopping, finances

Health care: medication management, physician's appointments, physical therapy

Emotional care: companionship, meaningful activities, conversation

Supervision: oversight for safety at home and to prevent wandering
Some hospitals, Area Agencies on Aging (AAAs), city or county agencies, Caregiver Resource Centers, or other government or private organizations offer consultation and assessments specifically designed for older people (called geriatric or needs assessments) for little, if any, cost. Another option is hiring, for a fee, a geriatric care manager or licensed clinical social worker. (See Resources below for help in locating someone near you.) These professionals can be helpful in guiding you to the best care in your area, advise you on community resources, assist in arranging for services, and provide you and your loved one with continuity and familiarity throughout the illness.

Step 5. Outline a care plan. Once your loved one has received a diagnosis and completed a needs assessment, it will be easier for you, possibly with help from a professional, to formulate a care plan—a strategy to provide the best care for your loved one and yourself. It’s a good idea to take some time to think about both short- and long-term needs.

This plan will always be a “work in progress,” as your loved one’s needs will change over time. To start developing a plan, first list the things you are capable of, have time for, and are willing to do. Then list those things that you would like or need help with, now or in the future. Next, list all your “informal supports”—that is, siblings, other family, friends, neighbors—and think about how each person might be able to provide assistance. List any advantages and disadvantages that might be involved in asking these people to help. Write down ideas for overcoming the disadvantages. Repeat the list for “formal” support (e.g., community services, paid home care workers, day programs).

It is important to set a time frame for any action or activities planned. Also, it is wise to have a back-up plan should something happen to you, both for the short-term and the long-term.

Step 6. Look at finances. Most people prefer to keep their financial affairs private. In order to best prepare and provide for a loved one’s care, however, you will need to gain a full understanding of his or her financial assets and liabilities. This transition can be uncomfortable and difficult. Consider having an attorney or financial planner assist you through the process (see the FCA Fact Sheet, Legal Issues in Planning for Incapacity). Assistance from a trained professional may reduce family tension and, if desired, provide you with a professional financial assessment and advice. Try to include your loved one as much as possible in this process.

Next, develop a list of financial assets and liabilities: checking and savings accounts, Social Security income, certificates of deposit, stocks and bonds, real estate deeds, insurance policies and annuities, retirement or pension benefits, credit card debts, home mortgages and loans, and so forth. It’s best to keep all these records in one or two places, such as a safety deposit box and a home file cabinet, and regularly update them. Keep a record of when to expect money coming in and when bills are due. You may need to establish a system to pay bills—perhaps you’ll need to open a new checking account or add your name to an existing one.

Step 7. Review legal documents. Like finances, legal matters can also be a delicate, but necessary, subject to discuss. Clear and legally binding documents ensure that your loved one’s wishes and decisions will be carried out. These documents can authorize you or another person to make legal, financial and health care decisions on behalf of someone else. Again, having an attorney bring up the issue and oversee any necessary paperwork can take the pressure off of you, as well as provide assurance that you are legally prepared for what lies ahead. (For more information about types of legal documents, see FCA Fact Sheets Legal Issues in Planning for Incapacity, Durable Powers of Attorney and Revocable Living Trusts,and Advance Health Care Directives.)

Other legal documents that you will want to find and place in an accessible location include Social Security numbers, birth, marriage and death certificates, divorce decrees and property settlements, military records, income tax returns, and wills (including the attorney's name and executor), trust agreements, and burial arrangements.

At some point, you may need to determine eligibility for such public programs as Medicaid. It’s helpful to speak with an elderlaw specialist. Information about low-cost elder legal services may be available through the Area Agency on Aging in your community.

Step 8. Safety-proof your home. Caregivers often learn, through trial and error, the best ways to help an impaired relative maintain routines for eating, hygiene, and other activities at home. You may need special training in the use of assistive equipment and managing difficult behavior. It is also important to follow a safety checklist:

Be aware of potential dangers from:

Fire hazards such as stoves, other appliances, cigarettes, lighters and matches

Sharp objects such as knives, razors, and sewing needles

Poisons, medicines, hazardous household products

Loose rugs, furniture, and cluttered pathways

Inadequate lighting

Water heater temperature—adjust setting to avoid burns from hot water

Cars—do not allow an impaired person to drive

Items outside that may cause falls, such as hoses, tools, and gates

Be sure to provide:

Emergency exits, locks to secure the house, and, if necessary, door alarms or an identification bracelet and a current photo in case your loved one wanders

Bathroom grab bars, non-skid rugs, paper cups rather than glass

Supervision of food and alcohol consumption to ensure proper nutrition and to monitor intake of too much or too little food

Emergency phone numbers and information

Medication monitoring

Step 9. Connect with others. Joining a support group will connect you with other caregivers facing similar circumstances. Support group members provide one another with social and emotional support, as well as practical information and advice about local resources. Support groups also provide a safe and confidential place for caregivers to vent frustrations, share ideas and learn new caregiving strategies. If you can’t get away from the house, online support groups offer opportunities to connect with other caregivers nationwide. (See Resources below to find a support group.) Another way to meet others going through a similar experience is by attending special workshops or meetings sponsored by organizations such as the local chapter of the Alzheimer’s Association or Multiple Sclerosis Society.

Step 10. Take care of yourself. Although this step appears last on this list, it is the most important step. Caregiving is stressful, particularly for those caring for someone with dementia. Caregivers are more likely than their non-caregiving peers to be at risk for depression, heart disease, high blood pressure, and other chronic illnesses, even death. Caregivers of persons with dementia are at even higher risk for poor health. The following simple, basic preventative healthcare and self-care measures can improve your health and your ability to continue providing the best care for your loved one.

Practice daily exercise. Incorporating even a small amount of regular exercise into your daily routine can do wonders—it can improve your night’s sleep, reduce stress and negative emotions, relax muscular tension, and increase your mental alertness and energy levels. The latest research shows health benefits from walking just 20 minutes a day, three times a week. Talk to your doctor about an exercise routine that is best for you.

Eat nutritious meals and snacks. Caregivers often fall into poor eating habits—eating too much or too little, snacking on junk food, skipping meals and so on. Much of eating is habit, so make it a point each week to add a new healthy eating habit. For example, if breakfast is simply a cup of coffee, try adding just one healthy food—a piece of fresh fruit, a glass of juice, whole-grain toast. Small changes add up, and can be realistically incorporated into a daily schedule.

Get adequate sleep. Many caregivers suffer from chronic lack of sleep, resulting in exhaustion, fatigue, and low energy levels. Depleted physical energy in turn affects our emotional outlook, increasing negative feelings such as irritability, sadness, anger, pessimism, and stress. Ideally, most people need six to eight hours of sleep in a 24-hour period. If you are not getting enough sleep at night, try to take catnaps during the day. If possible, make arrangements to get at least one full night’s rest each week or several hours of sleep during the day. If the person you care for is awake at night, make arrangements for substitute care or talk to his or her physician about sleep medication.

Get regular medical check-ups. Even if you have always enjoyed good health, being a caregiver increases your risk for developing a number of health problems. Regular medical (and dental) check-ups are important health maintenance steps. Inform your doctor of your caregiving role and how you are coping. Depression is a common and treatable disease. If you are experiencing symptoms such as a lingering sadness, apathy, and hopelessness tell your doctor. (See the FCA Fact Sheet,Caregiving and Depression.)

Take time for yourself. Recreation is not a luxury; it is a necessary time to “re-create”—to renew yourself. At least once a week for a few hours at a time, you need time just for yourself—to read a book, go out to lunch with a friend, or go for a walk. (See the FCA Fact Sheet, Taking Care of YOU: Self-Care for Family Caregivers for more helpful tips.)

Resources

Eldercare Locator
Administration on Aging
800-677-1116
The Eldercare Locator helps older adults and their caregivers find local services including health insurance counseling, free and low-cost legal services and contact information for Area Agencies on Aging (AAAs).



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 FAQ47 - Antipsychotic Black-Box warning
« Result #37 on Sept 2, 2008, 9:10pm »

Understanding the "Black Box" warning for antipsychotic medications.

Question - I read information from makers of Seroquel with all kinds of scarey stuff...I am used to disclaimers but this specifically states "Seroquel is not approved for dementia patients....what's what with this the inquiring mind wonders. H/C

Response - The explanation of the warnings for antipsychotics is long and complex.

It began a few years ago when they were running a study on Zyprexa in Canada. They observed that there was a slightly higher stroke rate in patients (dementia patients?) who were taking the med. So the Canadian drug agency issued a warning and Zyprexa added a warning to its package insert. It turns out that the makers of risperdal had seen the same effect and had had a similar warning for quite some time.

Some doctors reacted to the initial information by switching back to “conventional” antipsychotics like Haldol and Thorazine, but a later study showed that the harsher conventional antipsychotics had a greater risk that the newer “atypical” antipsychotics” (Seroquel, Risperdal and Zyprexa). And eventually, the warning was applied to all antipsychotics.

The US FDA did a review of various trial data that had been submitted over the years and determined that there is a slightly increased risk of death from cerebral-vascular events (strokes) in dementia patients who took various antipsychotics. The FDA eventually ordered a “Black box warning” on all antipsychotics. Included in the warning is the statement “Seroquel (or this antipsychotic) is not approved for dementia patients.”

Because the tests that are submitted to FDA are considered to be private property of the drug companies that submitted them, the FDA will not disclose the results that influenced the warning decision. A later public meta-analysis study looked at data from all published studies and determined that there is an increased risk to dementia patients. Meta analysis of different studies done with different criteria is a very inaccurate way to study something, but it does indicate that there is a basis for the concern. The study indicated a 1 to 2 percent increased risk of death from cerebral-vascular event (stroke).

Overall, this warning statement by the FDA is cynical, self serving and designed to confuse consumers, and is not helpful.

This warning was issued shortly after the Vioxx debacle, when it was eventually discovered that Vioxx created an increased risk for heart patients. The FDA received a lot of criticism for approving the drug in the first place. So when the antipsychotic issue came along less than a year later, they had to be seen taking strong action.

The fact is, that only 4 medicines are approved for dementia patients (specifically, approved for treating the actual dementia). Other medicines (diabetes, heart, blood pressure) are not specifically approved for dementia patients. And there is nothing illegal about using a med for more than the original purpose it was approved for. Most meds are given for off label purposes, or for age groups that the meds were never tested on, or for patients with a co-existing illness.

Ok, the antipsychotic issue is a little more complex than the usual “off-label” issue. Antipsychotics are approved for people with severe psychosis - specificly people with schizophrenia. Well it turns out that people with dementia often have psychosis. The psychosis is caused by a similar imbalance of neurotransmitters and the meds work for psychosis of dementia also, although much lower doses are required.

When most people read “Seroquel is not approved for dementia patients” what they think is that Seroquel is NOT SUPPOSED to be given dementia patients. That is not what it says. The statement is actually a CYA statement that states that this is an off label use. But those who do not understand how the drug approval process works, think that the statement means something much worse. You may remember EV’s stepson who found that statement and was determined that the med was inappropriate, dangerous, and prohibited. The second-guessing by someone who was not involved in the treatment decisions with the doctor created a great deal of trouble.

I do not want to minimize the risks that come with antipsychotics. There has always been some risk from Antipsychotics. Seroquel seems to be the one with the lowest side effect profile, but is well known for weight gain. Because of this, there is an associated risk of diabetes development. There is now an increased understanding that vascular factors seems to play a part in Alzheimers, so this risk is consistant with things being discover about the disease. And you have to remember that this is an at-risk group of people, who already have a terminal illness and usually, other chronic illnesses. So yes, there is a SMALL risk of having MAJOR complication with this med. It is the choice of the devil.

How have dementia doctors responded to all this? The problem is that there are no other meds that can be used for psychosis and agitation and aggression in dementia patients, so the meds are still widely used. There is little choice if treatment is needed. So doctors pay more attention to heart and stroke risk factors, and treat if necessary. And they use the meds at the lowest possible doses.

Most caregivers realize that this is a quality of life issue, vs quantity of life. If the person is tormented by psychosis (hallucinations or delusions) or they post a risk to themselves, caregivers or other residents, then treatment is needed. It is a matter of quality of life and ability to receive appropriate care.

Norbert

Article about the black box warning
http://pn.psychiatryonline.org/cgi/content/full/40/9/1

FDA announcement of the black box warning
http://www.fda.gov/cder/drug/advisory/antipsychotics.htm

Official seroquel information sheet
http://www.astrazeneca-us.com/pi/seroquel.pdf

http://www.newsinferno.com/archives/1457#more-1457
February 27th, 2007 A new report published in the current issue of the Canadian Medical Association Journal (CMAJ) claims that, among elderly patients, “the risk of death associated with conventional antipsychotic medications is comparable to and possibly greater than the risk of death associated with atypical antipsychotic medications.

http://www.thestar.com/article/221474
Dr. David Conn, co-chair of the Canadian Coalition for Seniors' Mental Health, said the organization released guidelines more than a year ago that focus on treating depression and behaviour in long-term care facilities.
"In our guidelines we say you should only use atypical antipsychotics if there's a risk of harm or if there's great suffering or disability caused by the symptoms," he said.

------------------------
Warning extended to older “typical” antipsychotics

FDA Warns About Some Psychiatric Drugs
By MATTHEW PERRONE, AP
Posted: 2008-06-18 11:22:40

WASHINGTON (June 17) -- The Food and Drug Administration warned doctors Monday that prescribing a certain group of psychiatric drugs to seniors suffering from dementia can increase their risk of death.

Antipsychotic drugs are approved to treat schizophrenia and bipolar disease, but doctors frequently prescribe them to treat elderly patients with dementia.

FDA's announcement was an update to a 2005 action, when regulators added warnings about increased heart attacks and pneumonia to drugs called atypical antipsychotics. The medicines include blockbusters like Eli Lilly & Co.'s Zyprexa and Johnson & Johnson's Risperdal.

FDA said Monday those same risks apply to 11 older drugs known as typical antipsychotics, including Pfizer's Navane and Endo Pharmaceutical's Moban. (..also Haldol and Thorazine..) The drugs were developed in the 1950s and have largely been replaced by the newer medications, which are believed to have fewer side effects, such as tremors.

Under FDA's orders, both drug types will now carry boxed warnings ? the most serious a drug can carry ? describing their risks to dementia patients.

Analysts did not expect the announcement to negatively impact drug company earnings because the original antipsychotics are available as low-cost generics.

Federal officials have repeatedly urged doctors not to medicate seniors unnecessarily. Despite such warnings, health professionals continue to prescribe psychiatric drugs "off-label," or for uses that have not been approved by FDA. About 20 percent of seniors in nursing homes who receive antipsychotics have not been diagnosed with psychiatric problems, according to data released by Medicare earlier this year.

While FDA regulates the approval and marketing of drugs, doctors are free to use their judgment when prescribing drugs.

The agency based its decision on two studies of a combined 65,000 seniors which showed those taking antipsychotics were more likely to die than those not on the drugs. Agency officials said it's not clear why antipsychotics hasten death. Scientists also could not determine from the data whether one group carries greater dangers than the other.

"We've struggled with this decision but we ultimately decided the data are strong enough to expand this label to drugs in both classes," said Thomas Laughren, director of FDA's psychiatric drug division.

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Snowy_Lynne
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 Convention
« Result #38 on Aug 28, 2008, 5:47pm »

The convention should be a good one tonight so tune in............
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 Re: July 7, 2008 daughter Sunday Rose
« Result #39 on Aug 17, 2008, 7:08pm »

Good to hear from you, NEO!!! ;D

How lucky she got a glimpse of a pregnant Nicole. Sweet!
Not many got that pre-view! ;) LOL

Have a blast at KU's last summer season gig and add some cheers from Larry and I!!! ;D ;D
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Neo
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 Re: July 7, 2008 daughter Sunday Rose
« Result #40 on Aug 17, 2008, 1:09pm »

Hey, thanks for posting that. My wife is up on all that stuff but my attentions have been elsewhere. My wife saw Nicole in Lexington at the tour ender in April and said she looked very pregnant and radiant :)

We're going to Konocti next weekend for Keith's last solo gig of this season but I doubt Nicole and Rose will be there. So happy that they both received the child that they so much wanted.

Neo
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 Re: A Video On The New Promising Drug Rember
« Result #41 on Aug 1, 2008, 5:24pm »

I was getting Namenda for Sam from the UK before it was in the States. They seem to get things first. Funny thing was I ordered it from the UK and it was shipped from New Jersey!!

greta
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my husband has had AD for 6 years, early stages. I was widowed twice before but this is the toughest. .


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 Re: A Video On The New Promising Drug Rember
« Result #42 on Aug 1, 2008, 5:23pm »

I was getting Namenda for Sam from the UK before it was in the States. They seem to get things first. Funny thing was I ordered it from the UK and it was shipped from New Jersey!!

greta
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my husband has had AD for 6 years, early stages. I was widowed twice before but this is the toughest. .


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Snowy_Lynne
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 Re: A Video On The New Promising Drug Rember
« Result #43 on Aug 1, 2008, 4:59pm »

not in the states.......
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Lynne


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alice
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 Re: A Video On The New Promising Drug Rember
« Result #44 on Aug 1, 2008, 4:51pm »

Lynne is this someone you know of here in the states? I know it has helped many in the UK.
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[image] I am no longer able to hold your hand my beloved but I cherish the remembrance of your hand in mine...and the wonderful person that touched so many lives with joy. : )


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Snowy_Lynne
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 Re: A Video On The New Promising Drug Rember
« Result #45 on Aug 1, 2008, 1:13pm »

There is already one man on Rember.............good results too.
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Lynne


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alice
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 A Video On The New Promising Drug Rember
« Result #46 on Aug 1, 2008, 11:23am »

http://www.telegraph.co.uk/news/uknews/2....-of-drugs.ht ml
My prayers that through more research this will be a break through for so many who will know Alzheimers in the future
and it will become available sooner then 5 years for those who now have AD..
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[image] I am no longer able to hold your hand my beloved but I cherish the remembrance of your hand in mine...and the wonderful person that touched so many lives with joy. : )


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 Re: FAQ31 - Live alone assessment
« Result #47 on Jul 29, 2008, 11:22pm »

Simple QUESTION:

How long would you leave them alone?

Never found that on any assestment.
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 July 7, 2008 daughter Sunday Rose
« Result #48 on Jul 29, 2008, 8:22pm »

Keith Urban and Nicole Kidman are the proud parents of a baby girl named Sunday Rose.
This is their first child together.
Sunday Rose was born in Nashville, Tennessee.




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Snowy_Lynne
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 Razadyne
« Result #49 on Jul 19, 2008, 9:34pm »

Razadyne will go generic at the end of the year according to the FDA.....
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Lynne


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Snowy_Lynne
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 Camp for kids of AD/FTD parents or grandparetns
« Result #50 on Jul 19, 2008, 5:57pm »

www.freewebs.com/younghope/2007/
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Lynne


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