Early-stage Alzheimer's patients 'don't want to be stigmatized'

By Mary Brophy Marcus, USA TODAY
Being treated with dignity is a universal human need, and perhaps even more so if you have early Alzheimer's disease, a new report indicates.
After a year of listening to the thoughts of more than 300 people diagnosed with early-stage Alzheimer's disease, the Alzheimer's Association today releases "Voices of Alzheimer's Disease," which reveals many patients in the early stages of dementia feel they are prematurely perceived as debilitated — even by close friends and relatives

The report summarizes feedback from recently diagnosed patients, who, along with 700 caregivers and health professionals, attended town-hall-style meetings in four cities or participated online.

Those who have early-stage Alzheimer's don't want to be defined by their memory loss or functional decline, says Peter Reed, senior director of programs at the Alzheimer's Association.

The report says top concerns include:

• Frustration with how the stigma and.....
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another article about this topic
New report summarizes issues voiced by those living in the early stage of Alzheimer’s disease

Clinical Trials: How you can make a difference with Alzheimers and other diseases

(NAPSI)-Many Americans may not realize it, but many of the treatments that save lives today are based on yesterday's clinical trials. Diseases that we are only aware of by name, such as smallpox and polio, have been eliminated because of medical research and testing. Advances in hypertension, diabetes and cancer have been powered by everyday people participating in clinical trials.

What Is A Clinical Trial?

A clinical trial is a process that seeks to answer specific questions with the goal of finding better ways to prevent, screen for, make diagnosis of or treat a disease. This process studies or tests in humans a new procedure (knee replacement), a drug (aspirin), a vaccine (HPV vaccine) or a device (MRI).

Clinical trials are important because they are how scientists can research ways to improve your health and quality of life. They can range from examining the effect of exercise on reducing blood pressure to determining if estrogen can prevent memory loss and Alzheimer's disease in women with a family history of Alzheimer's.

Clinical trials can prove to be crucial...

read more about clinical trials click here

Click here to learn about an Alzheimers clinical trial in Michigan

Alzheimer's and Other Dementia Caregivers Should Be Honored This Labor Day

August 23, 2008
It is estimated that there are over 50 million caregivers, of people with Alzheimer's disease and related dementias, worldwide. Learn what a hard job they have and why they deserve everyone's praise this Labor Day.

According to the United States government Labor Day, celebrates the contributions workers have made to the strength, prosperity, and well-being of America. Alzheimer's and other dementia caregivers certainly meet these criteria.

The first reason to honor these caregivers is for the financial burden they incur when caring for a person with dementia. First the family has consulted an Elder law attorney to get all the finances in order. Most likely the caregiver had to cut back on the hours of paid employment. Despite using all the resources out there, all expenses for the care of a dementia person will not be covered. That means go without, or pay for necessary items out of pocket......

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Thank you all

Convincing parents, with Alzheimers, to accept outside help, care is a tough job

Marsha Seff
UNION-TRIBUNE
August 23, 2008

“My dad, with Alzheimers, is now at a point where he really cannot take care of himself without a caregiver living in the home, and he refuses both to have someone move into the home or move to a nursing home. Any suggestions?”

Obviously, Mike isn't the only one with this problem. Given the choice, most older folks would cling to their independence until the day they pass away quietly in their own beds. Most don't want a stranger in their home. Even fewer would elect to move to a retirement home....

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Alzheimer's, dementia and other caregivers, can enjoy better sleep

As stated in the last post, nighttime can be nightmarish for those who live with someone in the moderate-to-advanced stages of Alzheimer's or other dementias. The sleep patterns of caregivers over age 60 who provide direct, live-in care for people with dementia are significantly worse than those of noncaregivers, says a study in the new Journal of Clinical Sleep Medicine. These caregivers:

Get less total sleep (an average of 6.5 hours per night)
Take longer to fall asleep

What can caregivers do to improve their sleep?

Practice good sleep habits
click here to see what they are

Minimize the sundowning and wandering of the Alzheimer's or dementia person
click here for some tips

Think about night time respite care
read about it here

Get a depression evaluation
Here is some
valuable info

Join a support group
information
Alzheimers Association recommendations

Join an online support group
click here to join

More information on being a well caregiver
click here

Caregivers take longer to fall asleep

GAINESVILLE, Fla., Aug. 18 (UPI) -- U.S. researchers say they were surprised to find caregivers of Alzheimer's and other dementia patients took longer to fall asleep.

Primary investigator Meredith Rowe of the University of Florida said the researchers had expected the caregivers' main sleep problem would be more time awake in the middle of the night when the person with dementia needed supervision. However, both caregivers and non-caregivers had an average of more than 40 minutes of time awake during the night after initially falling asleep....

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Creativity is alive and well with those who have Alzheimer's disease and other dementias

Read the story below about a writer with Alzheimer's disease. Even those who were not creative before the Alzheimer's or dementia struck, can be creative now with the right tools

BBC News Magazine August 18, 2008
An ailing brain with imagination undimmed
Last year Terry Pratchett, the bestselling author of the Discworld fantasies, was diagnosed with Alzheimer's. How does the writer cope with a disease that whittles away at his brain?

When writer Terry Pratchett was told he had Alzheimer's disease, his first thought was "that's a bit of a bugger". That, and "I hope they hurry up and find a cure quick."

In December 2007, at the age of 59, the Discworld author was diagnosed with a rare early-onset form of the disease called Posterior Cortical Atrophy, or PCA.
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Post a comment if you would like to know about how to help a person with Alzheimer's disease or another dementia, be creative

Living With A Person Who Suffers From Alzheimer's Disease or Related Dementias

Best Healthcare Reports
Health Editor

It's not easy to learn the new habits of persons suffering from Alzheimer's disease or another dementia. Their habits and prefences may have changed. Here are some important tips to keep in mind when living with persons who have Alzheimers's disease or a related dementia.

Family and friends often become the main caregivers of people with Alzheimer's disease or another dementia and need to learn to cope with changing behaviours or limited mental abilities. While it can be difficult to live with a dementia sufferer, it's usually best to put our own feelings of loss and frustration aside to focus on how we can provide a good, happy environment for the sufferer. But it's not always easy to learn the new habits of a person we no longer really know as we once did, and there are some tips to keep in mind to help pave the way....

click here to learn what they are

Alzheimerr's disease, dementia and nursing homes

A daughter had to move her father with Alzheimer's to a nursing home
Here are her thoughts as published ih the Shreveport Times on August 15

Dear David: Recently, I had to move my father into a nursing home when his behavior started to scare my two young children. He lived with us for several months and, at first, it was good to have him here, even though he needed a lot of help physically. He suffers from dementia, which became much worse as the months progressed. He started to sleep very erratically, would wake up the household in the middle of the night talking to himself very loudly and in an angry tone. As his sleep pattern became more and more erratic, he became more and more difficult for all of us to live with. His doctor tried several medications, but nothing seemed to help. Ultimately, we had to make the decision to move him to a nursing home because it wasn't fair to continue to subject the children to Dad's very strange behavior. The problem I'm having is that I'm wracked with guilt, even though I know we've done the right thing. I feel terrible that my own children became so afraid of my dad, whom I adore, and I feel awful that Dad is now around strangers instead of family. — Distressed Daughter

Read what David and others had to say

Caregivers of spouses with Alzheimer's disease and related dementias enjoy life less

ScienceDaily (Aug. 13, 2008)

Spouses of husbands and wives with Alzheimer's disease and other dementias pay an emotional toll as they care for their ailing spouse. This has prompted a call for new interventions and strategies to assist caregivers in coping with the demands of this difficult time, according to a study from Case Western Reserve University's Mandel School of Applied Social Sciences.

"Caregivers have a long exposure to stresses and losses from the dementia and fatigue that comes from caring for their spouses, so they experience fewer positive emotions," said Kathryn Betts Adams, assistant professor of social work at the Mandel School. "Some may have feelings of guilt about participating in activities with friends or in the community when their loved ones are no longer able to do so."

Adams added that caregivers also report sadness and loneliness....

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please read this related story
Caregivers Benefit From Cancer Support Programs, Study Shows

You can help with Alzheimer's research funding

Dear Reader:

Congress has proposed the first significant increase in funding for Alzheimer research in five years. The increase would push funding to approximately $662 million and keep pace with medical research inflation.
Unfortunately, Congress may not bring the bill with the proposed increase for Alzheimer research funding to a vote before adjourning for the election in November.

Your lawmakers are home in August and are listening to their constituents. Demand that they vote for the proposed funding increase for Alzheimer research when they return to Washington DC in September!

Take Action:

Email your Senators and Representative. Demand a vote on the Labor/Health & Human Services/ Education Appropriations bill (S 3230)!

Use our Write Congress tool to send your message.

Remember to personalize the email by adding a few words on why Alzheimer research matters to you.

To learn more about our progress towards increasing Alzheimer research funding, see our monthly Federal Update.

New to Alzheimer Advocacy?
Register now to receive Action Alerts via email.

Need a direct link to this action? http://www.alz.kintera.org/action

THANK YOU

Communication key to dementia care

New research presented at the International Conference on Alzheimer's Disease (ICAD)says that:

Good communication skills and regular interaction are vital when caring for people with dementia. This research shows that speaking to people with dementia in an adult manner not only enhances their quality of life but also improves the entire care experience.

Quality care relies on simple principles and even small changes can vastly improve quality of life for people with dementia.

Communication Tips
8Help them to word find if necessary but not make sense.
*Use simple statements that are adult like
*Use cues and friendly reminders
*Do not put them in potentially awkward situations
*Have a communication book with pictures they can point to
*Use and read body language
For more tips click here

What Makes Baby Faces Special, Helps Those With Alzheimers

Aug 06, 2008 – The topic of Charles Osgood’s file recently was "Why do baby faces make us smile?"

Most people, including those with Alzheimer’s disease and other dementias, feel "instinctively" that babies faces are cute.

Researchers at Oxford University have done a study to find out why we react in such a positive way to babies.

Because babies are quite a lot of trouble, Oxford researchers Morton Kringelbach and Alan Stein thought that this response must be instinctual. They used imaging scans to measure brain activity in volunteers being shown images of unfamiliar adult and infant faces.

Prof. Alan Stein of Oxford University says, "In response to baby faces, but not in response to adult faces, these volunteers showed very specific activation of the brain."

Prof. Alan Stein says, "In an area called the orbitofrontal cortex, which is very much an emotional part of the brain where the reward-based stimuli seem to be based."

Is this just a momentary thing? Or does it last a while?

Stein says "These baby faces are selectively tagged by the brain for further activation."
In other words, that cute baby face is setting you up for duty.

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Top Strategies for Late Summer Sparkle with Those Who Have Dementia

PRLog (Press Release) – Aug 04, 2008 – Over 5.2 million people in the US now have Alzheimer's disease or a related dementia. We all benefit from being out in the great outdoors. The sunshine, the smells, the sounds, usually bring back happy memories. People with dementia should have this opportunity too.

Following these tips will ensure you and your loved one or client, with Alzheimer's disease or another dementia will have a pleasurable summer.

Structure and routine.
Try to follow regular predictable routines that include pleasant familiar activities. Remind the person that everything is going according to plan. Designate a certain time to go for a walk or sit in the backyard together.

Pleasant outdoor and indoor activities.
Make time for simple pleasant activities the person knows and enjoys---listening to music, watching a movie or sporting event, sorting coins, playing simple card games, walking the dog, playing catch,or dancing can all make a big difference.

Keep things simple.
Break down complex tasks into many small simple steps that the person can handle (e.g. stirring; folding towels while doing the laundry). Allow time for frequent rests.

Redirect
Sometimes the simplest way to deal with agitated behavior is to get the person to do something else as a substitute. For example a person who is restless and fidgety can be asked to sweep rake or cut grass dust fold clothes or take a walk with the caregiver. Someone who is rummaging can be given a collection of items to sort and arrange. Have a box of items for outside too.

Refocus.
Sometimes it is enough to offer a snack or put on a favorite videotape or some familiar music to interrupt behaviors that are becoming difficult.

Have flexibility.
Your loved one might want to do some activity or behave in a way that at first troubles you or may refuse to do something you have planned like taking a bath. Before trying to interfere with a particular behavior, it is important to ask yourself if it is important to do so. Even if the behavior is bizarre, it may not be a problem especially in the privacy of your own home

Soothe.
When the person is agitated it may help to do simple repetitive activities such as a massage or hair-brushing.

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Exercise verses Alzheimer's and related dementias

By Jeremy Manier | Chicago Tribune reporter
August 5, 2008
Some nuggets of health advice seem so intuitive and appealing that you would think they just have to be valid. A recent example is the idea that physical exercise can hold off Alzheimer's disease or slow the progression of symptoms in people who have been diagnosed.

Some preliminary research suggests that exercise can improve brain function, but many doctors are not ready to say that at-risk patients should begin a workout regimen.

Being more fit never hurts, but there's no hard evidence yet that starting an exercise plan can affect an elderly patient's risk of dementia or improve the condition once it starts, said Dr. David Bennett, director of the Alzheimer's disease center at Rush University Medical Center.

Not a treatment
"It's not something I'm going to put on a prescription pad for my patients," Bennett said. "Healthy patterns of behavior probably need to start earlier in life."

Read the whole article and a comment

Reliable medical news source reveals Alzheimer's disease hope

Medscape Today reports
Tau-Based Alzheimer's Disease Therapy Appears to Arrest Disease Progression, Improve Cognition in Phase 2

Caroline Cassels,
August 1, 2008 (Chicago, Illinois) New research suggests that a treatment that targets neurofibrillary tangles arrests disease progression and improves cognitive function in patients with mild-to-moderate Alzheimer's disease (AD).

According to investigators, the results of the randomized, double-blind, placebo-controlled phase 2b study of methylthioninium chloride (MTC, Rember), a tau-aggregation inhibitor, mark the first time a tau-based therapy has been shown to have a disease-modifying effect on AD.

"The data from this study strongly suggest that this kind of treatment could halt disease progression at an early Braak stage. In other words, when the pathology is just beginning to kill neurons," said principal investigator Claude Wischik, MB ChB, from Aberdeen University, United Kingdom, and chairman of TauRx Therapeutics that developed the drug.

The phase 2 study, presented for the first time here at ICAD 2008: Alzheimer's Association International Conference on Alzheimer's Disease, involved 321 patients with mild-to-moderate AD from 17 centers in Singapore and the United Kingdom.

The primary objective of the 24-week trial was to compare the effects of oral MTC (at 30, 60, and 100 mg, 3 times per day) and placebo on cognitive function, measured using the Alzheimer's disease assessment scale-cognition (ADAS-cog). This was followed by a 60-week blinded active-treatment extension of the trial.

Among the secondary outcomes were the safety and tolerability of the drug, and the effect of MTC on a range of scales, including the Mini-Mental State Examination (MMSE), the Clinical Dementia Rating scale, sum of boxes (CDRsb), the Clinical Global Impression of Change (CGIC), the Alzheimer's Disease Functional Assessment and Change Scale (ADFACS), and the Neuropsychiatric Inventory (NPI).

But most important, said Dr. Wischik, the investigators were interested in examining the drug's disease-modifying potential.

Reason for Hope?
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