Happy New Year for dementia caregivers

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Huffington Post

For the 11 million Americans caring for a husband, wife, family member, or friend with Alzheimer's disease or a related disorder, this New Year's Eve will be more hopeful than usual because Congress has finally voted to establish the National Alzheimer's Project Act (NAPA). From all of us who worry about the people who have this disease, and their family and friends, all of whom are coping heroically every day, a grateful toast to Congress and our passionate plea to President Obama to sign the National Alzheimer's Project Act (NAPA; S. 3036) swiftly into law.
NAPA would require HHS to create a strategic plan for the federal government's role in fighting Alzheimer's disease, form an advisory council, and coordinate research, care, institutional services, and home- and community-based programs.

This is good news and long overdue. America will be one of the last developed nations to make dementia a national public health priority and develop a strategic plan, lagging behind Australia, South Korea, Norway, France, England, Scotland, India, Malta, Cyprus, and Wales, even though Alzheimer's Disease International identifies, "develop[ing] national plans to deal with the disease" as the top priority in combatting the disease worldwide.

Now we must work together to create the best possible plan, drawing on all available research about what works and is available today to help families managing this degenerative disease, as well as what holds promise for the future.

We still have no cure for Alzheimer's, and the vast majority of research funding focuses on the search for drugs to prevent, delay, or reverse the course of the disease. This work is indisputably important; we are all hoping for a cure and rooting for our colleagues in the pharmaceutical and biomedical research field to succeed.

But drug research should not be allowed to overshadow excellent treatment options that are available right now -- options that too many never hear about.

We are glad to see that the bill mandates coordinating "care and treatment of citizens with Alzheimer's." This may sound obvious, but sadly, it is not. Many families have difficulty obtaining a diagnostic evaluation and most families are left on their own to manage daily care challenges as the disease progresses. America's strategic plan must include expanded availability of proven non-pharmacologic treatments and expanded funding to support researchers and providers of that care.

As the name suggests, rather than prescribing drugs, non-pharmacologic treatments (NPTs) employ counseling, skills training, activity engagement and occupational therapy-based strategies to provide families with the knowledge, skills, and support they need to protect their own health and cope with the intense demands of caregiving, while helping people with dementia maintain the best possible quality of life and stay independent and safe for as long as possible.

Several NPTs have been proven in randomized trial and peer-reviewed studies to improve patients' and families' quality of life and reduce the cost of care. Unfortunately, despite their proven effectiveness, NPTs have consistently received a fraction of the research funding and clinical reimbursement of drug therapies, which have so far done much less to help Alzheimer's patients. (The Rosalynn Carter Institute for Caregiving states that these programs are actually "more effective" than any known AD drugs.)

The evidence-based services provided by Thomas Jefferson University's Jefferson Elder Care and New York University's Caregiver Intervention are two examples of NPTs that answer World Alzheimer's International's call for policies and plans with "an explicit focus on supporting family caregivers." Families interested in finding out more about promising programs that can be helpful now can consult the excellent resource databases of the Rosalynn Carter Institute for Caregiving and the US Substance Abuse and Mental Health Services Administration's National Registry of Evidence-based Programs and Practices.

Waste: Is that the key reason for Alzheimer's

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Washington Post
Amy Marcus

Biological waste material normally is broken down by the part of the cell known as the lysosome. If something goes wrong in the process, toxins, made up largely of various proteins, start to build up and cause cells to deteriorate and die. When this happens in the brain, the accumulation of cellular waste products includes amyloid beta-protein, which has been linked with Alzheimer's and other types of dementia.

Researchers suggest that problems in the lysosome represent an early event in the dementia process that, if treated or reversed, could stop the disease from taking hold.

Ralph A. Nixon, professor of psychiatry and cell biology at New York University's Langone Medical Center and the Nathan Kline Institute, says experiments with mice with Alzheimer's disease have helped to support this theory. Dr. Nixon says he and his colleagues were able to prevent cognitive decline in the animals by improving the functioning of the enzymes in the lysosome so that the waste proteins were degraded and processed faster. Ideally, Dr. Nixon says, drugs would repair the defective mechanism intended to eliminate toxic proteins before damage is done to the brain.

Traditional drug development in Alzheimer's disease is taking too narrow an approach by focusing intensively on the buildup of amyloid beta-protein in the brain, Dr. Nixon says. That's because amyloid, although important, is just one of the many toxic proteins that swell the neurons when the lysosomal system breaks down. "The sheer bulk of waste proteins that are accumulating within the neurons in Alzheimer's disease brains is enormous,'' Dr. Nixon says.

Dozens of rare genetic conditions affecting children lead to the buildup of cellular toxins, which without treatment can cause neurological problems and sometimes death. Among the best known of these are Tay-Sachs disease and Gaucher disease. Moreover, a better understanding of how the lysosome functions could lead to treatments for other maladies, such as Huntington's disease and Niemann-Pick Type C.

Researchers are trying different approaches to target the lysosome as a possible treatment for Alzheimer's and other diseases. In some cases, they are trying to increase the activities of certain enzymes in the lysosome that help degrade the waste products. In other instances, they are trying to get the lysosomal system to work faster or more efficiently at recycling the waste products before they have a chance to build up and cause problems in the cell.

David C. Rubinsztein and a team of researchers at the Cambridge Institute for Medical Research in Cambridge, England, are taking a similar approach to target Huntington's disease, a fatal hereditary disorder that leads to a loss of neurons in the brain. Dr. Rubinsztein, a professor of molecular neurogenetics, says that one way to slow down or delay the onset of Huntington's disease may be to enhance the removal of the mutant huntington protein that is toxic to the cells.

Researchers screened a group of compounds already in use for various conditions and found that two hypertension drugs, clonidine and rilmenidine, speed up the removal of the mutant huntington protein from mice. In a study testing rilmenidine published earlier this year in the journal Human Molecular Genetics, mice with Huntington's disease were given the drug starting at five weeks and then tested from 12 weeks of age. The mice that got the drug did better than the mice that didn't get the drug, showing improvements in limb strength and tremors.

Early next year, a safety trial involving people who have early symptoms of Huntington's disease will be launched. Ultimately, if the drug appears to have an effect, Dr. Rubinsztein says they would like to give it to people before symptoms appear in the hopes that it could delay onset of the disease.

At the Mount Sinai School of Medicine in New York, researchers led by Yiannis A. Ioannou have been studying cyclodextrin, a compound that has extended the lives of mice with a lysosomal storage disorder called Niemann-Pick Type C (NPC). Although the exact mechanism for this effect isn't fully understood, Dr. Ioannou argues that the substance may work by stimulating the lysosomes in the mice neurons to dump out all of the stored waste products at once. This could be helpful for other neurodegenerative disorders that also have lysosomal involvement, he says.

Cyclodextrin is already being tested in mice with Alzheimer's disease by researchers including Dr. Nixon and is being given on an experimental, individual basis to a small number of children in the U.S. and Brazil who have NPC disease. Still, one reason why doctors haven't yet set up a clinical trial in NPC patients is because they aren't sure how the drug is working, since cyclodextrin is believed not to be able to cross the blood-brain barrier that separates circulating blood from neuronal cells.

In a paper published earlier this month in Plos One, Dr. Ioannou and his colleagues demonstrated that cyclodextrin pokes holes in cell membranes, triggering lysosomes to empty their contents in an effort to repair the damage. Now the Ioannou lab is studying whether this signal can also be transmitted across the blood-brain barrier to the lysosomes in brain cells to tell them to empty their stored waste products. Understanding how this works may make it easier to develop drugs that may help not only patients with NPC disease but a number of other neurodegenerative disorders, Dr. Ioannou says.

Opinion: Is it better to know your Alzheimer's risk

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New York Times

A few prominanr doctors weigh in on the subject

The decision to offer a test for Alzheimer’s disease should be based on its accuracy and reliability, not on concerns about causing psychological harm by giving a grim diagnosis.

In my experience as a physician, patients are resilient in the face of adversity. When confronted with bad news, they make positive changes in their lives, strengthen their relationships with others and make preparations for the future. They do not need our protection, but rather our support.

At some point I may be told I have the disease that will be my undoing. When that day comes I hope that my doctor will respect me enough to tell me the truth so my family and I can face the future with courage and dignity.

Mahesh Swaminathan
New York, Dec. 20, 2010

The writer is an infectious-disease specialist at Mount Sinai School of Medicine.

•

To the Editor:

I understand that there is no cure for Alzheimer’s disease and that little if anything can be done to postpone it or to treat it once it is manifest. But that is a clinical, medical rationale for withholding the diagnosis.

I am all too aware of what having that information means since my mother died of Alzheimer-related causes. Nevertheless, I most definitely do want to know if the same fate is in store for me so that I can begin to plan the rest of my life while I am still “in charge.”

Most important, I would invest my savings in a supportive, long-term living arrangement, one that I would choose, on my own terms. And I would decide myself what to do with all my “stuff” — my books, collections, clothing and furniture.

And then I would try to live every hour of every day with eyes and ears wide open, savoring the sights and sounds of this life as best I can, for as long as I possibly can.

Lois Bloom
Sandestin, Fla., Dec. 19, 2010

•

To the Editor:

Thinking of elderly patients whom I’ve known for years, I am nearly certain that informing patients of the diagnosis of Alzheimer’s disease as early as possible, or telling them of an increased risk of the disease, will be harmful on the whole.

We don’t exactly know what Alzheimer’s disease is. There are lots of different kinds of dementia, and the concept of “normal” human aging is very poorly understood.

Further, the harms can be serious; some patients may even consider assisted suicide. Several studies have been done about patients who are worried that they have Alzheimer’s. There is very real suffering involved in the anticipation, and the suffering can begin years before there is any demonstrable abnormality or disability. The diagnosis is sometimes and inexplicably shameful.

If I am to get Alzheimer’s at age 70, at what age would I like to know this? Never. I would like to notice at age 75 that my wife and kids are becoming at once oddly solicitous and a bit patronizing.

Thomas E. Finucane
Baltimore, Dec. 18, 2010

The writer is a doctor specializing in geriatrics and a professor at Johns Hopkins University School of Medicine.

•

To the Editor:

Anyone who has seen Alzheimer’s disease in the vacant eyes of his or her loved ones fears nothing more than seeing it in the mirror. As the caregiver for the past 17 years for both my husband (early onset Alzheimer’s) and my mother (late onset), I had a genetic screening three years ago that indicated a gene variant that puts me at increased risk.

So when doctors ask why we should test until we can effectively treat, I would respond that we, as a baby boom generation of potential victims, own that decision — not our doctors.

We should test and count ourselves among the “worried well.” Because putting our own lives on the line can take the Alzheimer’s debate out of the closet of private suffering and into the town hall of political action. We should test because hiding from the future is no longer smart living.

Knowing our risk, we would be more inclined to enlist for clinical trials. Early diagnostic testing is one way to act against Alzheimer’s, rather than waiting to be acted upon.

As a generation, we must refuse to forget who we are. This means daring to know our future.

Meryl Comer
President, Geoffrey Beene
Foundation Alzheimer’s Initiative
Washington, Dec. 19, 2010

Top Ways to Successfully Calm an Agitated Person with Dementia

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Here are more interesting dementia brain boosting activities



ementia is a brain disorder that affects a person's short term memory initially. However as this condition progresses other parts of the brain are affected. This can affect a person's communication skills and
ability to do tasks he has done before,

He can also experience hallucinations and delusions. Because of these things, a person with dementia may become agitated. So it is best to know this person well, whether he is a family member, client, or a patient at a long term care facility. By knowing him, you will realize what things set him off and what things calm him down. Careful observation and asking those who are with this individual with dementia for most of the day, help you to know what strategies will work when trying to calm this person.

Your goal is to calm or soothe the person with dementia who is agitated. You do not want to exhibit behavior that may further agitate a dementia person. The best way to soothe an agitated person with dementia is not to have him get agitated in the first place. This requires that you anticipate his needs and wants. It also requires that you approach him in a certain way. You should use slow, deliberate movements and approach this individual from the side. Also you should make sure not to use gestures that may be misinterpreted as being threatening. In addition you need to know what the beginning of agitation looks like in this particular person with dementia. He may pace, ask repetitive questions, call out, grimace, become silent or a variety of other things.

If this person with dementia has trouble communicating, he may be experiencing pain, hunger or fear, He may be bored, tired or having an adverse affect from a medication he is taking.

You should always note the time, duration, frequency, severity and special features of a dementia person's agitation.

These strategies work to maintain calmness in a person with dementia, Always call the dementia person by name and introduce yourself.You may need to remind him who you are. Never ask......read all of Top Ways to Successfully Calm an Agitated Person with Dementia

Memory problems with dementia explored

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allvoices

Findings recently published in the journal Science reveal new research from the University of Cambridge has shown that memory problems like those seen in dementia may happen because the brain forms incomplete memories that are more easily confused.

Scientists found that the ability of the brain to maintain complete, detailed memories is disrupted.

The scientists are hopeful that their research could lead to new treatments that should reduce the confusion between memories,

"This study suggests that a major component of memory problems may actually be confusion between memories, rather than loss of memories per se,” said Dr Lisa Saksida.

"This is consistent with reports of memory distortions in dementia - for example, patients may not switch off the cooker, or may fail to take their medication, not because they have forgotten that they should do these things, but because they think they have already done so," she added.

As part of the research, animals were shown an object and then, after an hour, were given a memory test in which they were either shown the same object again, or a new object.

Normal animals spent more time exploring the new object, indicating that they remembered the old object. Amnesic animals, performed poorly on the memory task, because they spent the same amount of time exploring the old and the new object.

Interestingly, some amnesic animals looked at the new object less than the normal animals did, showing false memory for the new object.

Saksida continued, "One thing that we found very surprising about our results was the extent of the memory recovery, achieved simply by reducing the incoming information prior to the memory test.

"Not only does this result confound our expectations, but it also gives us a....read all of Incomplete Memories Formed with Dementia

Recent New Discoveries in Alzheimer's Disease Research

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allvoices

A group at the Delaware Biotechnology Institute is now working on a diagnostic test that would be as simple as checking a blood sugar level. to see whether or not a person has Alzheimer's disease. The scientists are working on new technological procedures to discover useful diagnostic tests for Alzheimer's disease. They are also working on methods to evaluate the usability of potential drug treatments.

Because of more diagnostic accuracy, there will be improved patient care and better research toward the discovery of new drugs. As a result, the research laboratory at the University of Deleware is working on the development of next-generation tools for protein profiling.

In 2006, the discovery of a.....Read more about New Discoveries in Alzheimer's Disease Research

No-Fail Strategies For A Happy Chanukah With Someone Who Has Dementia

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ezine

Chanukah is a perfect opportunity to spend some quality time with a loved one, friend or client with Alzheimer's disease or another dementia. Here are some ideas that will put a smile on everybody's face and make all involved feel good.

Carry on family traditions

One such tradition most family do, is candle lighting. Even those with advanced dementia may spontaneously recite portions of the blessings for the candles.

Also retell the story of why Chanukah is celebrated. Maybe you and persons with dementia can reenact the story. If you are not sure of the story, visit your local library or visit Judaism 101 on the web.

Perhaps third you can play dreidel. This activity is a lot of fun. If you are even slightly clever, you can help folks with dementia make an adapted dreidel that is easy to spin. You can even put extra gimmels on it so winning is easier. For directions visit Alzheimer's ideas on the internet.

This is a game the whole family can play. Make sure to involve children. Most folks with Alzheimer's disease or a related dementia, love children. This game is the perfect opportunity to bring these two groups together.

There is a good book out there that...Read all of No-Fail Strategies For A Happy Chanukah With Someone Who Has Dementia

Pestisides linked to Alzheimer's

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The Independent

Long-term exposure to pesticides may increase the risk of Alzheimer's disease and other forms of dementia, according to a study released Thursday.


Workers "directly exposed" to bug and weed killers while toiling in the prestigious vineyards of Bordeaux, France were five times more likely to score less well on a battery of neurological tests than those with minimal or no exposure, the study found.

As revealing, this high-exposure group was twice as likely to register a significantly sharp drop in a key test - frequently used to diagnose dementia - repeated four years after the initial examination.

The drop "is particularly striking in view of the short duration of follow up and the relatively young age of the participants," mostly in their late 40s or 50s, the authors said.

The findings, published in the peer-reviewed journal Occupational and Environmental Medicine, add to a growing body of evidence suggesting that chronic use of pesticides in agriculture boosts the risk of neurological disorders.

France has the highest use of insecticides and herbicides in Europe, and the fourth highest worldwide after the United States, Japan and Brazil.

More than 800,000 people in France are exposed in the agriculture sector, as were another 800,000 who are now retired.

Worldwide the number of labourers who work regularly with pesticides is counted in the tens, if not the hundreds, of millions.

In the Bordeaux study, led by Isabelle Baldi of The French Institute for Public Health, Epidemiology and Development, 614 workers were enrolled in 1997 and 1998 and re-evaluated four or five years later.

On both occasions they completed a detailed questionnaire on their work history, along with nine tests designed to measure memory and recall, language retrieval, verbal skills and reaction times.

The subjects were divided into four groups depending on their level of exposure to pesticides over the previous 20 years or longer, ranging from "directly exposed" to "not exposed".

"The mild impairment we observed raises the question of the potentially higher risks of injury in this [exposed] population, and also of the possible evolution toward neurodegenerative diseases such as Alzheimer's or other dementias," the researchers concluded.

The same cohort is undergoing a third evaluation, 12 years after the baseline examination. Results will be published in 2012 or 2013.

"This time lag should enable us to better understand cognitive impairment and its evolution, and observe the first cases of Alzheimer's disease among a population close to 65 years of age," the researchers said in a companion briefing paper.

Top Ways to Stay Healthy

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Staying healthy delays dementia so from

allvoices........

The thing to do for optimum health is something your grandparents probably did, but we, in our fast paced society, tend to overlook because we say that we are just too busy to do it.

The first thing you should do, at least one hour everyday, is exercise.

Daily exercise is key to preventing heart disease and stroke by making your heart muscle stronger. Exercising also lowers your blood pressure. In addition, daily exercise raises your high density lipoprotein levels (HDL). This is your good cholesterol. Your bad cholesterol, low density lipoprotein or LDL, is lowered. This in turn improves the blood flow to your heart thus increasing your heart's working capacity.

Exercising also strengthens and boosts your immune system. Some recent studies have suggested that exercising improves the functioning of your immune system. Exercise is a strong natural immune cell stimulator. This is really important for older men because their immune system progressively declines as they age. This can lead to a poor response to vaccinations and an increased risk of developing infectious diseases.

Luckily regular, moderate workouts, like jogging, walking or cycling, can, at least in part... Read all of Top ways to Stay Healthy

Tips for interacting with those who have dementia and others

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Here are more interesting dementia brain boosting activities



Exercpt from the book Adorable Photographs of Our Baby

Successful groups have great beginnings, meaningful middles and excellent endings




Each group should have a beginning where you:

1. Introduce yourself.

2. Say how glad you are to be there.

3. Thank everyone for coming.

4. Tell the group members your favorite something (flower, color, food, shape, smell, etc.). Try to relate it to the upcoming group.

5. Then ask group members to introduce themselves and tell their favorite something. Give a choice of two, if necessary, or say: This is Mary, and I think she likes apples. Right Mary?



Meaningful Middles..Foe more refer to the book Adorable Photographs of Our Baby or sign up for Current Activities in Geriatric Care