THE GIRL, 13, WHO'S HAD DEMENTIA SINCE SHE WAS NINE

A 13-year-old girl is suffering from Alzheimer's-like dementia after developing an extremely rare form of the disorder.

Isobel Jeffery displays the same symptoms as some victims in their 70s, and can no longer feed or dress herself or walk or talk properly. She becomes easily confused and suffers memory loss, nightmares and hallucinations. Isobel was diagnosed with early onset dementia aged nine after she began to slur her words, lose the ability to swallow and became unsteady on her feet.

She now needs 24-hour care and will never develop the basic day-to-day skills to look after herself.

Child dementia is extremely rare and affects about one in 12million - about 500 worldwide. It is sometimes treatable, but although there are 100 different types of dementia, including Alzheimer's, doctors say Isobel's condition has not responded to any medication.

Her mother and full-time carer, Nicola, 39, says her daughter has lost understanding of the world around her as her mind has gradually shut down. But she described her as a 'rare cookie' who retains a sense of humor and goes about her life with enthusiasm.

The mother of two from Exeter said: "When she was nine she suddenly started slurring her words and was less clear in her talking. It sounded like she was drunk."

"Now it is a relentless loss of skills and mobility. We've been told that she will slowly deteriorate. She has undergone extensive tests but the outcome is always the same."

'The prognosis is she will get gradually worse." She added: 'The cruel thing about dementia is that she is semi-aware of the fact that she is losing her skills."

"Despite all this, she is one of the most vibrant people I have ever known, with a wicked sense of humour and enthusiasm about life."

After her diagnosis Isobel gradually lost the ability to concentrate and her conversation became 'fixed' and 'rigid'.

Doctors have said that the condition will eventually rob her of her ability to walk, speak and even communicate with her family at all.

She has been given just ten to 15 years to live - meaning she could be dead before her 30th birthday.

Dementia is a degenerative and progressive disease which can affect all areas of mental and physical functions, not just memory. Diagnosis before the age of 65 is considered as early onset. For Isobel it has meant learning difficulties, impaired memory and sensory processing problems.

Isobel lives with her mother, father Keven, 39, a nuclear safety engineer, and sister, Katie, eight.

Mrs Jeffery said: 'Two years ago we took the painful decision to have an operation to enable her to be tube fed directly into her stomach because she was no longer able to swallow."

"We don't know why it is happening. Izzie effectively has Alzheimer's although she is only 13. But she is a rare cookie and really has made every attempt to live her life to the full."

Terry Roberts, of the Alzheimer's Society, said: 'This is a very sad state of affairs which re-emphasizes how important support is for the young person and the carers."

Mrs Jeffery is taking part in a four-day, 370-mile bike ride from London to Paris to raise awareness of her daughter's condition and funds for research. It begins on September 16.

To sponsor her, visit www.justgiving.com/nicolajeffery2.

(Source: The Daily Mail, September 12, 2009 - http://www.dailymail.co.uk/health/article-1212904/The-girl-13-whos-dementia-nine.html?printingPage=true)The mother of two from Exeter said: 'When she was nine she suddenly started slurring her words and was less clear in her talking. It sounded like she was drunk." "Now it is a relentless loss of skills and mobility.

(Join The Malaysia National Alzheimer's Caregivers Online Network - NACON )

DRUG FOUND TO CREATE NEW CONNECTIONS IN BRAIN, RESTORING AND IMPROVING MEMORY

Scientists at the Blanchette Rockefeller Neurosciences Institute (BRNI) have discovered that a cancer drug – Bryostatin – enhances the formation of new connections in rat brains during memory storage. This drug could potentially increase normal memory capacity in humans as well as repair and restore memory lost from Alzheimer’s disease, stroke and head trauma.

In an article in the December 4 issue of the Proceedings of the National Academy of Sciences (PNAS), BRNI Scientific Director Daniel Alkon, M.D., and Jarin Hongpaisan, Ph.D., describe how the cancer drug Bryostatin stimulates the production of connections between neurons in the same structural way that memory storage does naturally. Bryostatin essentially rewires the brain.

"There have been no effective drugs to promote brain repair,” Dr. Alkon said. “Bryostatin and other BRNI drugs in this class could introduce a whole new era for brain repair. At the same time, we are now closer to understanding what controls the growth of synaptic connections in the adult brain."

The BRNI research shows that a healthy brain normally undergoes some ‘rewiring’ when it stores memories. Bryostatin enhances this rewiring in normal healthy brains and also creates new connections in brains that have been ravaged by Alzheimer’s disease, stroke or head trauma.

Alkon and Hongpaisan used high-powered electron microscopes to directly visualize these synaptic connections between neurons. They also used molecular markers to label these connections to confirm the synaptogenesis induced by memory and Bryostatin.

“Diseases like Alzheimer’s actually destroy synapses in the human brain. There is still no recognized cure,” said Dr. Alkon. “In our animal studies with Bryostatin, damaged brains repaired synaptic connections of cells that were ruined from disease, giving the brain more capacity for memory. If this result is applicable to humans, this could be life-changing for Alzheimer’s patients.”

In previous BRNI studies, Bryostatin was found to markedly increase survival of mice with human Alzheimer's genes, decrease the production of the toxic Alzheimer's protein called A Beta, and increase the production of the healthy proteins from human cells.

Bryostatin also shows the ability to accelerate the production of synapses when paired with learning exercises. According to Dr. Alkon, this could eventually lead to new treatment therapies for children with compromised memory activity.

In 2004, BRNI received patent protection for the use of Bryostatin - originally developed as a cancer drug - to treat Alzheimer's disease. BRNI is preparing now for the first clinical trials of Bryostatin for the treatment of neurological disorders. Clinical trials will test whether Bryostatin’s promising preclinical results generalize to humans.

Source: http://www.alzheimersweekly.com/Research/drug-found-to-create-new-connections-in-brain-restoring-and-improving-memory-a226.html

(From The Malaysia National Alzheimer's Caregivers Online Network - NACON)

TROUBLE WITH DAILY ACTIVITIES COULD POINT TO ALZHEIMER'S RISK

Problems carrying out daily chores or enjoying hobbies could predict which people with "mild cognitive impairment" will progress more quickly to Alzheimer's dementia, U.S. researchers report.

According to the Alzheimer's Association, mild cognitive impairment (MCI) is "a condition in which a person has problems with memory, language, or another mental function severe enough to be noticeable to other people and to show up on tests, but not serious enough to interfere with daily life." This type of mental state is considered a risk factor for dementia.

In fact, some studies have found that about 10 percent to 15 percent of those with MCI will progress to dementia each year, according to background information in the new study.

Reporting in the September issue of the Archives of Neurology, the researchers sought to determine if there were telltale signs within MCI that might spot those people who would progress more rapidly to full-blown dementia. To do so, they collected data on 111 people with mild cognitive impairment, then evaluated these individuals using brain scans and cognition tests.

Over the next two years of follow-up, 28 people did go on to develop dementia.

"On their own, the tests did not predict which patients went on to develop dementia," said lead researcher Sarah Tomaszewski Farias, an Associate Professor of Neurology at the University of California, Davis.

"However, level of daily function was a key predictor," Farias said.

"So, if an older adult is starting to display problems in daily life, such as problems shopping independently, problems managing their own finances, problems performing household chores, and problems maintaining their hobbies, they are more likely to develop a dementia within several years," she said.

Farias cautioned that the study involved people visiting a clinic because they were already having memory and other problems, so the implications could be different among the general population of older adults.

"If you look at individuals in the community, you see a much slower progression to dementia in those with some mild cognitive impairment," she said. "The time to develop dementia once someone has mild cognitive impairment is probably slower in the general population of older adults than we had previously thought."

Still, any kind of early warning is helpful, and Farias believes health-care providers should ask patients and those who know them well - a spouse or adult child - about how they are doing in their daily lives.

"It is important to keep in mind that sometimes individuals themselves lack awareness of some of these problems. So it is important, if at all possible, to get feedback from individuals who are familiar with how the older adult is functioning in their daily life," she added.

"If there is evidence or suspicion that an older adult has some mild cognitive or memory problems, and it is starting to interfere with their ability to do daily activities, there is a higher likelihood this individual is developing a dementia and they should be closely monitored," Farias said.

Greg M. Cole, a Neuroscientist at the Greater Los Angeles VA Healthcare System and Associate Director of the Alzheimer's Center at UCLA David Geffen School of Medicine, said it is crucial to be able to identify people with early Alzheimer's disease, "if we want to test methods of preventing it."

"This study illustrates the difficulties in early diagnosis of Alzheimer's disease in aging people with mild problems with memory and cognition," Cole said.

"In my view, because memory and cognitive performance vary widely in our population no matter what age, the best indications of ongoing decline are going to be seen against past individual performance rather than some cross-sectional 'normalized' standard," he said.

Dr. Ronald C. Petersen, Director of the Alzheimer's Disease Research Center at the Mayo Clinic in Rochester, Minn., agreed that, despite the lack of effective treatments, spotting Alzheimer's disease early remains important.

"If people in the family start to recognize a change in memory/learning patterns, that might be sufficient to identify someone who could develop Alzheimer's disease," Peterson said. "Don't wait until the person is having trouble driving, is having trouble paying their bills or having trouble functioning in the community - that's dementia," he said. "This study tells us that we can identify important symptoms earlier and it may be worthwhile doing so."

Source: HealthDay, September 17, 2009

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INFECTIONS MAY SPEED ALZHEIMER'S MEMORY LOSS

A split-view image showing PET scans of a normal brain (L) and a brain with Alzheimer's disease. Reuters/National Institute on Aging/Handout

Catching a cold or the flu could speed memory loss in people with Alzheimer's disease, researchers reported.

In a study of patients with mild to severe Alzheimer's disease, they found that people who suffered acute or chronic infections, or even bumps and bruises from a fall, were much more likely to have high blood levels of a protein involved in inflammation and also experienced faster memory loss than people who did not have infections and who had low levels of this protein.

It's possible that finding a way to reduce inflammation in the body "could be beneficial for people with Alzheimer's disease," study chief Dr. Clive Holmes, from the University of Southampton, UK, said in a prepared statement. Over about 6 months, Holmes and colleagues measured the cognitive abilities and blood levels the inflammatory protein TNF-alpha of 222 people with Alzheimer's disease. They also interviewed each subject's main caregiver several times during the study. During follow up, roughly half of the study subjects experienced a sudden infection or injury that led to inflammation, and a spike in TNF-alpha levels. These people, the researchers found, experienced memory loss that was at twice the rate of those who did not have infections or injuries. People who had high levels of TNF-alpha in their blood at the beginning of the study, a sign of chronic, ongoing inflammation, had memory loss at four times the rate of those with low levels of the protein at the start of the study. By contrast, subjects with low levels of TNF-alpha throughout the study showed no decline in brain function, the report indicates. "One might guess that people with a more rapid rate of cognitive decline are more susceptible to infections or injury, but we found no evidence to suggest that people with more severe dementia were more likely to have infections or injuries at the beginning of the study," Holmes noted in a prepared statement.

Source: Neurology, September 8, 2009.

(Join The Malaysia's National Alzheimer's Caregivers Online Network - NACON)

NEW ALZHEIMER'S GENE LINK DISCOVERED

Scientists working in seven countries announced they had uncovered variants of three genes which play a role in Alzheimer's, a discovery that should throw open many new avenues for tackling this tragic, mind-killing disease.

The biggest cause of dementia, Alzheimer's has a strong heritability -- nearly one in four cases are believed to have a genetic cause -- but precisely which genes are to blame and how their fiendish mechanism works remain elusive.

So far, three culprit genes have been found in "familial" Alzheimer's, a rare, early-onset form in which the disease shows up before the age of 60. This type accounts for less than three percent of all cases.

Of the far more common "sporadic" type, where there is no readily identifiable family history of the disease, just a single gene, APOE4, has come to light -- and it was spotted way back in 1993.

But hopes are now rising that a few of the many knowledge gaps may now be filled.

In two papers published in the journal Nature Genetics, a team based in Britain and the other in France report that a trawl through the DNA of 36,000 individuals has added three new genes, whose tell-tale variants showed up among people with Alzheimer's.

That finding could be useful in the search for a diagnostic tool, helping people with a heightened susceptibility to Alzheimer's make lifestyle decisions, even if a cure for the disorder remains beyond the far horizon.

Farther afield, it could help tease out a pharmaceutical weapon to interfere with the action of the faulty genes.

In Alzheimer's, clumps of protein called amyloid plaques and tau tangles proliferate in the brain, especially the cortex and hippocampus, destroying brain cells and their connections.

A progressive, degenerative disease, it causes forgetfulness and confusion, disturbs thinking, emotions and behaviour, eventually leading to death.

The role of the three newly-identified genes remains unknown.

Two of them, called CLU and CR1, may be involved in the elimination of amyloid plaques, so faulty variants may allow the toxic compound to build up, the scientists believe.

The other, called PICALM, controls brain chemicals that are important at synapses -- the connection between neurons -- and is involved in the transport of molecules into and inside nerve cells, thus helping to form memories and other brain functions.

"These findings are a leap forward for dementia research," Rebecca Wood, chief executive of the Alzheimer's Research Trust, a British charity that funded research encompassing universities in Britain, Belgium, Germany, Greece, Ireland and the United States.

"At a time when we are yet to find ways of halting this devastating condition, this development is likely to spark off numerous ideas, collaborations and more in the race for a cure."

The other paper was authored by a team from France's National Institutional of Health and Medical Research (Inserm).

The team "has about 10 other genes that may be possible targets" but further work is needed to confirm this, lead researcher Philippe Amouyel, of the Institut Pasteur in Lille, told AFP.

There is no cure at present for Alzheimer's, although some researchers are confident that a first generation of drugs that will slow or block the spread of the disease is not far away.

Present drugs have only a temporary effect. They inhibit an enzyme that reduces acetylcholine, a vital chemical used in communication between brain cells.

A breakthrough is urgently needed.

Alzheimer's primarily surfaces among people beyond their mid-60s, thus as the world's population ages, case numbers will surge, badly straining hospital systems.

According to an estimate published by the journal The Lancet in December 2005, the number of people with dementia will more than triple by 2040, reaching 81 million. China and South Asia will see the biggest increases.

Source: AFP, September 7, 2009

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ELDERLY MUST LEARN TO DETECT ILLNESSES

By 2020, nearly 10 per cent of the population will be 60 years old and above.

Malaysian Healthy Ageing Society President, Associate Professor Nathan Vytialingam said the nation faced a huge challenge in handling the implications of an ageing population, which include demands on the public healthcare system and services for the aged.

"Chronic diseases will pose a heavy health and economic burden on older adults due to diminished quality of life. It would also increase healthcare costs."

The risk of disease and disability came with advancing age, he said, and there was a need to educate the elderly on how to detect, prevent and treat age-related illnesses.

Many of these could be prevented through leading a healthy lifestyle with regular physical activity and a balanced diet.

"They must go for regular medical screenings to catch any illness at the earliest stage so they can be treated," he told the New Straits Times.

As people age, they must be made aware of chronic diseases and conditions such as Alzheimer's disease, arthritis, depression, psychiatric disorders, osteoporosis, Parkinson's disease and incontinence, he said.

"It is important they know how to prevent or delay their onset."

He said that at the same time the aged were educated about age-related illnesses, caregivers must be taught how to look after them.

Source: New Straits Times, September 8, 2009 - www.nst.com.my

(From The Malaysia's National Alzheimer's Caregivers Online Network - NACON)

ALZHEIMER'S DISEASE CAN BE MANAGED

ALZHEIMER'S disease, which has affected 60,000 Malaysians, is on the rise.

There is a serious need for mental tests that will help with early detection of the disease and reduce the number of cases, says Alzheimer's Disease Foundation Malaysia (ADFM)'s Executive Committee Vice-Chairman, Ong Eng Joo.

Ong said the lack of awareness is to blame for the increasing numbers.

"The detection rate in Malaysia is very low. There are tests that can be done to detect Alzheimer's cases such as MMSE (Mini Mental State Exam) test. "

Despite intensive research in recent years, the disease is still not yet fully understood and there is still no known cure.

People with Alzheimer's, or "the long goodbye" as it is also called, suffer a decline of mental functions, which eventually interfere with the patient's normal daily activities.

Over time, Alzheimer's patients lose their ability to perform even the most basic tasks like brushing teeth, putting on clothes and bathing. The ability to walk and talk may be lost as well.

"People are living longer, increasing the rate of Alzheimer’s exponentially. Those most at risk of developing Alzheimer’s are the elderly, and the risk increases with age." said Ong Eng Joo, Executive Committee Vice-Chairman of ADFM.

Ong said people were living longer, thanks to advances in medicine, but this posed other problems.

"A longer life span increases our ageing population. People are living longer, increasing the rate of Alzheimer's exponentially."

"Those most at risk of developing Alzheimer's are the elderly, and the risk increases with age. According to worldwide statistics, one in 20 of those aged 65 and above have Alzheimer's."

"But, among those aged 80 and above, one in five have Alzheimer's."

There is also a small group of people who develop what is called "early onset Alzheimer's" from as young as their late 30s or 40s.

Ong said the increase in Alzheimer's cases also affected the lives of some 250,000 caregivers.

"Sadly, there are only three daycare facilities in the country that provide relief for caregivers," he said.

Puan Sri Wendy Ong (left) says many Malaysians still do not understand Alzheimer's Disease, while Dr Lee Fatt Soon says many people think the disease is a natural part of ageing.

"Ideally, we should have one daycare centre in each state to cater for the increasing ageing population."

"But this can get very expensive. Getting staff is the biggest problem as it's important that the patients don't wander off."

ADFM Patron, Puan Sri Wendy Ong said many Malaysians were still unclear on the reality of Alzheimer's.

"Lack of awareness and understanding has led to continuous suffering for those affected as they often lack the required care and assistance."

Hospital Kuala Lumpur Geriatric Unit Head, Dr Lee Fatt Soon believed a lot of people made the common mistake of attributing Alzheimer's as natural consequence of ageing.

"It is a progressive disease which attacks the brain, causing impaired memory, thinking behaviour and functional activity."

"We need to communicate the message that the disease can be better managed through early diagnosis and intervention, thereby leading to better quality lives for patients,caregivers and their family."

Alzheimer's is the most common cause of dementia. It is not part of normal ageing but involves the progressive loss of brain nerve cells.

At present, 18 million people worldwide have the disease. It is predicted that by 2020, 34 million will have Alzheimer's.

Alzheimer's will be recognized globally tomorrow, with the theme "Diagnosing Dementia: See It Sooner", emphasizing the importance of early diagnosis.

Source: The Sunday Times, September 20, 2009 at www.nst.com.my

(From The Malaysia's National Alzheimer's Caregivers Online Network - NACON)

WORLD ALZHEIMER'S DAY

THIS year's World Alzheimer's Day (WAD) is themed, "Diagnosing Dementia: See It Sooner". It seeks to bring people from all around the world to emphasise the importance of early diagnosis of the disease.

Alzheimer's Disease Foundation Malaysia (ADFM) in collaboration with Novartis Corporation Malaysia has announced a series of initiatives to mark WAD 2009, including the Global Alzheimer's Disease Charter.

THE CHARTER calls for action to address the growing public health and social care emergency posed by Alzheimer's and related dementias.

It upholds six core principles to make Alzheimer's and other dementias a global health priority:

(1) Promoting awareness and understanding of the disease.

(2) Respecting the human rights of patients with the disease.

(3) Recognizing the key role of families and carers.

(4) Providing access to health and social care.

(5) Stressing the importance of optimal treatment after diagnosis.

(6) Taking action to prevent the disease, through improvements in public health.


(From the Malaysia's National Alzheimer's Caregivers Online Network - NACON)

(SAT) 26 Sept '09 Public Event Commemorate World Alzheimer's Day By Alzheimer's Disease Foundation Malaysia (ADFM) in Collaboration with Novartis

Dear Members & The Public,

To commemorate World Alzheimer's Day (on September 21st), ADFM in collaboration with Novartis Corporation Malaysia is organizing a public event in the form of a talk and other activities for patients and caregivers on:

Date : Saturday, 26 September 2009
Time: 9:30 am - 1:00pm
Venue : Rumah Alzheimer's, No. 6 Lorong 11/8E, Section 11, 46200 Petaling Jaya.

Program:
09:30am : Arrival of guests and registration
10:00am : Welcome address by ADFM President BoT, Dato' Jeffrey Ng Chin Heng
10:10am : Talk on "Alzheimer's Disease/Dementia" by Dr Lee Fatt Soon, Head of Geriatrics, Hospital KL
10:40am : Q & A
11:00am : Tea Break
11:20am : Family activities & games for Patients and Caregivers
01:00pm : Lunch and adjourn

Note:
(1) Due limited space, prior registration with ADFM Secretariat is required - Tel: 603-7956 2008 / 7958 3008
(2) All visitors are requested to park their cars along Jalan 11/8 in front of Telekom and walk the few steps, or drop your older loved ones and park outside.

Location Map:

From The Malaysia’s National Alzheimer's Caregivers Online Network

GLOBAL ALZHEIMER'S DISEASE CHARTER:

Dear Members & the Public,

Alzheimer's Disease International has developed a Global Alzheimer's Disease Charter to draw attention to the urgent action needed from governments and stakeholders to make Alzheimer's disease and other dementias a health priority around the world!

The Charter was launched last year on World Alzheimer's Day - 21st September 2008.

With this year World Alzheimer's Day on 21 September of this month, it is timely to remind us to show our concern and support by signing the following charter (if you have not signed up yet ) at: http://www.globalcharter.org/

GLOBAL ALZHEIMER'S DISEASE CHARTER:

We are facing a public health and social care emergency and immediate action is needed!

Alzheimer's disease is the most common cause of dementia and accounts for 60-70% of all cases. Alzheimer's disease and other dementias are progressive, degenerative illnesses that attack the brain. They affect people's abilities, impacting on all aspects of their life and upon others in their lives, particularly those who care for them day by day.

Every year, 4.6 million new cases of dementia are reported worldwide: One new case every seven seconds. By 2050, it is projected that there will be 100 million people with dementia in the world. No country is adequately prepared to deal with a crisis of this magnitude.

Lack of awareness and understanding has resulted in insufficient resources to address this crisis. Worldwide, attention to this rapidly growing problem is so small that most of those affected continue to suffer without help, or hope. This must change! The quality of life of people with Alzheimer's disease and other dementias can be transformed. Too often, they, their families and carers lack the support that they need and deserve.

We, the members of Alzheimer's Disease International (ADI), representing 71 associations around the world, urgently call upon all governments and stakeholders to act now.

The following six principles should be adopted to make Alzheimer's disease and other dementias a global priority:

(1) Promote awareness and understanding of the disease
(2) Respect the human rights of people with the disease
(3) Recognize the key role of families and carers
(4) Provide access to health and social care
(5) Stress the importance of optimal treatment after diagnosis
(6) Take action to prevent the disease, through improvements in public health

Within the limits of the resources available to different countries, an eleven-point action plan consistent with the Kyoto and Paris Declarations should be implemented as follows:

(1) Provide public information about the symptoms, treatment and course of the disease
(2) Reduce stigma by promoting understanding and awareness
(3) Provide training and tools to healthcare professionals (including social workers) and family caregivers, to encourage early assessment, diagnosis, appropriate care, and access to optimal treatment
(4) Provide access to primary and secondary health care services, responsive to the needs of people with dementia
(5) Promote access to a range of options for long-term care that prioritize maintenance of independence, home and community-based care and support for family carers
(6) Make all care environments, including (acute) hospitals and long term care institutions, safe places for people with the disease
(7) Encourage the fullest possible participation of those living with the disease, in the life of their communities and in decisions about their care
(8) Ensure a standard of living adequate for health and well-being, including food, clothing, housing and medical care for people with the disease
(9) Provide a legislative framework to regulate and protect the rights of those people with dementia who lack the capacity to manage their everyday lives
(10) Fund awareness programs to promote greater understanding that the risk of the disease can be reduced
(11) Prioritize research into Alzheimer's disease and other dementias.

Alzheimer's disease and other forms of dementia are not a natural part of ageing. Prevention is possible. Care can improve quality of life for the person with dementia and their families. Medical research will continue to improve upon existing effective treatments. Be positive and adopt the solutions that will help millions of people today and tomorrow.


(From the Malaysia's National Alzheimer's Caregivers Online Network - NACON)

21 September '09 World Alzheimer's Day - DON'T YOU FORGET

21 September is World Alzheimer’s Day. Find out what you can do to make it count.

THIS year’s flurry of educational events held in conjunction with World Alzheimer’s Day will take place in over 50 countries and focus on "Diagnosing Dementia: See It Sooner”.

This month’s Art4Health piece was created by Malaysian Art Director, Walter Teoh in support of World Alzheimer’s Day 2009. It illustrates how the memory loss and inability to mentally process information an Alzheimer’s patient experiences can make him feel like he is slowly losing the bits and pieces that make him.

Why is early detection important? Because Alzheimer’s is incurable, but appropriate care and medical treatment can slow its progression and improve patient quality of life.

The sooner it’s detected, the sooner intervention can take place, and the better the outcome for patients, caregivers, and the community at large.

FAST FACTS

Alzheimer’s Disease is the most common cause of dementia (the loss of control of conscious mental processes) among older people, but it is not part of the normal ageing process.

In Alzheimer’s, nerve cells in the brain progressively die. At the same time, the brain produces less of the chemicals that allow nerves to communicate with each other.

As the parts of the brain typically affected first are those that store and retrieve new information, memory is usually affected first.

Early stage patients may also experience difficulty in finding the right words and mood swings. Don’t dismiss these symptoms as part and parcel of old age!

Later stage patients may suffer deeper lapses of memory and have difficulty understanding what they’re told. They may forget daily living skills, undergo personality changes, or appear indifferent to those around them.

Advanced stage patients may become unable to speak, walk, and eat independently. Some lose their sense of time and place, and may wander off with no idea where they’re headed or recollection of how they got there. Some lose their inhibitions and sense of propriety, and may undress in public or make inappropriate sexual advances.

Take a minute to visit www.globalcharter.org/film and watch A Cup of Tea, a (very) short film produced by Alzheimer’s Disease International.

Some drugs can slow disease progression and alleviate symptoms like depression, paranoia, insomnia, and hallucinations. But loving care, patience, understanding, and a safe, stable environment are what a patient needs most.

WHAT YOU CAN DO

Attend a talk, like any of those listed in Events, to learn more.

Watch A Cup of Tea, a (very) short film produced by Alzheimer’s Disease International at www.globalcharter.org/film.

Contribute to Alzheimer’s care. For example, at the Alzheimer’s Disease Foundation Malaysia (ADFM) two centres, RM30/day pays one person’s way, covering meals, daily activities, staff salaries, and maintenance. To find out how you can help, contact ADFM Secretariat at Tel: 603-7956 2008 / 7958 3008 or Email: adfmsec@streamyx.com.

Sign the Global Alzheimer’s Disease Charter if you feel all governments should promote awareness and understanding of Alzheimer’s; respect the human rights of people with the disease; recognize caregivers; provide patient access to health and social care; stress the importance of optimal treatment after diagnosis; and increase prevention by improving public health.

(Source: Sunday Star, September 6, 2009 at http://thestar.com.my/services/printerfriendly.asp?file=/2009/9/6/health/4641611.asp&sec=health)

From Malaysia's National Alzheimer's Caregivers Online Network

HABILITATION: A BETTER CAREGIVING APPROACH

A quiet revolution is taking place in Alzheimer's care. The approach is called habilitation, and it has been credited with easing caregiver and patient stress, improving communication, and helping to maintain emotional bonds between individuals with Alzheimer's and their family members.

Habilitation focuses on respecting the feelings of people with Alzheimer’s and making the most of their remaining capacities, rather than trying to restore lost abilities (rehabilitation) - often in vain - or impose rigid standards for thoughts and behavior. Although the tenets of habilitation may seem intuitive, they run counter to the ways in which many Alzheimer’s patients are treated in nursing homes and family caregiving settings.

Accepting Their Reality
In the past, Alzheimer's caregivers were encouraged to practice "reality orientation" with their patients or loved ones. This meant constantly reminding the Alzheimer’s patient of the date and correcting the demented person's faulty beliefs and inaccurate perceptions in order to pull them "back to reality."

For example, if a person with Alzheimer's insisted that she had talked with her deceased husband on the phone that morning, a caregiver would remind her that he had died many years earlier. Oftentimes an argument would ensue, with the caregiver insisting that the person accept the reality of her husband's death. These attempts at reality orientation are not only frustrating and fruitless, but they often trigger agitation and angry outbursts from the patient.

Habilitation takes the opposite approach. The caregiver interacts with the Alzheimer’s patient on his or her own terms. The concept involves entering the person's world, offering patience and acceptance of their reality. In the situation described above, a caregiver practicing habilitation would say something soothing and reassuring, such as, "You and Harry love each other very much, don't you?" or "Tell me about Harry."

The practice of habilitation acknowledges that while a person with Alzheimer’s may not have the ability to reason or remember, he or she still feels emotion. As a result, caregivers do not attempt to reason with or correct the Alzheimer’s patient. Instead, they try to connect with the individual on an emotional level. Communication involves identifying the emotion behind the person's words and finding a way to address and validate those feelings.

Streamlining Their Space
A major part of habilitation is accommodating your loved one's physical reality as well, which means simplifying the living environment and keeping it as free of distractions as possible. This can help the person to continue to perform self-care tasks and simple household chores that promote independence and feelings of competence. Keep clutter to a minimum, reduce noise, and adjust lighting to minimize shadows, which can confuse or frighten a person who has Alzheimer’s. Dimmer switches on lights can be used to control light intensity. This can be helpful in reducing late afternoon and early evening agitation known as sundowning by increasing light intensity at these times of day.

Remember to break chores into simple steps and to provide only a small amount of information at a time. A caregiver following the tenets of habilitation tries to remain positive, calm, and encouraging and to refrain from criticizing and pointing out mistakes.

Enriching Their World
Most individuals with Alzheimer's disease get pleasure from doing things that they have always enjoyed, so it's important to pursue leisure activities that they find pleasing. Create opportunities for success by considering what they liked doing in the past and determine if there are activities that the person can still accomplish without becoming frustrated or agitated. Depending on the stage of Alzheimer’s disease the person is in, these might include crafts and hobbies, making or looking at scrapbooks and photo albums, stringing beads, baking cookies, going for walks, listening to music, or any other enriching activity that can keep the person occupied and engaged.

Social contact and physical activity are also important. Taking walks together in the neighborhood or mall, window-shopping, gardening, and planned activities at a senior center are just a few of the possibilities.

(Source: Johns Hopkins Health Alerts, August 31, 2009)

Medical Disclaimer: The information on this page is not intended to substitute for the advice of a physician.